Friends, Romans, countrymen, lend me your ears, and also $50, because I accidentally bought myself too many “treat yourself” Christmas gifts for myself instead of buying for other people, and now I need to get my mom a gift—don’t read this, Mom! But don’t worry! If you’re shopping for your mom, or your cousin, or the lady who does your hair, or your dog walker, or your let’s be real, you’re looking for stuff to add to your wish list, I’ve got you covered!

This year’s edition is split into three categories depending on price, and I’m also including two different types of products—(1) items I’ve purchased and absolutely loved, and (2) items I haven’t purchased but absolutely want to buy based on reviews.

Since I have absolutely conquered and covered almost every single dysautonomia related product from my past years of gift guides, this gift guide is not solely centered on dysautonomia gifts, but you will certainly find many chronic illness friendly and appropriate gifts, along with a few things that could even work for your weirdo family member who has never experienced illness a day in their life.

Alas,

Are you ready to take this journey with me?

Stocking stuffers!

I have a confession to make—I went against my personal convictions with this section. I have a deeply held belief that a “stocking stuffer” should never cost any more than $10, but, y’know, the economy, everything is so expensive. My stocking stuffer category here includes items from $1-$15, and I’m sorry for being that person, but all of these items are of the spirit of stocking stuffer picks, so, I’m at least delivering on that promise.

Sunflower Legos

Growing up I was not a legolomaniac (that’s what we call them, right?) like my older brother was, but I appreciated a good lego set at school and in a doctor’s office waiting room. (Which thinking about it now, wow, gross.) The magic of Lego is that they keep making cooler, and cooler, and cooler sets that keeps drawing me in and thinking “oh, maybe I should try this?” even though I know I would get so frustrated after a while—I have not the patience.

Still, I absolutely love these flower sets they’ve been putting out the last few years—I love that they don’t look completely impossible, and at the end you have something super aesthetically appealing to display, a flower that won’t die and smell rotten in a few days.

• Sunflowers, $14.99, via Lego

• you can also find these at Target, Walmart, Amazon, etc

Penguin Hand Warmers

I, and I think most people with dysautonomia, have absolutely terrible blood circulation, so my hands and toes are prone to being freezing all the time, especially in winter. I’ve used some of those single use heat packs but the waste of it all really bums me out, so a few years ago I got a rechargable hand warmer which was great and would make an excellent stocking stuffer. I found these penguin hand warmers and c’mon this would be so good as a gift in The Year of Pesto the Penguin—who wouldn’t want to keep their fins warm this way? Plus, this would help me get closer to my lifetime dream of shaking hands with a penguin.

• Gaiatop Hand Warmers Rechargeable, 2 Pack, $14.99, via Amazon

Leather Air Tag Keychain

I have to put Air Tags on everything because I’m constantly losing things—thank you, brain fog. These leather keychains have holders for the Air Tags and are absolutely adorable—a huge step up from the standard silicone ones on the market.

• Leather Keychain Holder Case Compatible with Apple AirTag, $8.99, via Amazon

• Throw in some AirTags while you’re at it — $24 for one, or $72 for four!

• You can also find these for super cheap on Ali Express

Straw Toppers

I absolutely love tumblers, but the fact that the straw is just out there and exposed to the elements all the time is kind of gross. Enter, exciting, cute, fun straw toppers. I have found such cute options from tiny little cowboy hats to sea creatures to happy clouds. Great option for the person with a Stanley Cup (which is, most people.)

• Cowboy Hat Straw Cover Cap, $7.99, via Amazon

• Polar Animals Straw Cover Cap, $7.99, via Amazon

Kanoodle Game

I’ve seen this game advertised all over TikTok and it reminds me of the math games and puzzles my Third Grade teacher used to give us for enrichment activities. It looks fun but also a little frustrating which makes it a perfect game to do while bingewatching garbage TV.

• Educational Insights Kanoodle Brain-Teasing Puzzles 14pc, $8.49, via Target

• you can also find these at most major retailers where toys are sold

Socks (HEAR ME OUT GUYS)

I think the punchline of every 90s sitcom was that the worst gift to get on Christmas was socks, but no way man, give me all the socks every Christmas, provided they’re fuzzy or high quality Bombas ones.

Bombas socks are wonderful but have outrageous price tags—if you have that kind of money to spend, God bless you and please send a pair my way—but these fuzzy gripper socks on Amazon have great reviews and a great price tag to match.

• Womens Slipper Fuzzy Grips Socks, $14.99, via Amazon

• Bombas socks

Tombow Brush Markers

I’ve done a lot of coloring and arts and crafts projects this year and have invested into some high quality markers. I love the Tombo brush for the colors selections they have, the color filling, and the marker shapes themselves. If you’re shopping for an artist, grab a pack of these, they’re so good.

While you’re at it, if you can, throw some of these cozy coloring books by Coco Wyo in there with it!

• Tombow 56185 Dual Brush Pen Art Markers, $13.29, via Amazon

• you can also find these at all major craft stores

Geometric Coloring Book

One of my favorite things that came out this year is this brand new geometric coloring book by my middle school pal, Jackie. She is a Raleigh based artist who intertwines bright color, geometric patterns, and heart wrenching/mind bending questions. This coloring book lets you be in charge of adding in the color while pondering the questions she poses for you.

This is a phenomenal gift for everyone you know, especially because of its budget price! And while you’re at it, check out all of the artwork and prints she sells—she has everything from window color catchers, stickers, to one of a kind art.

• J. Sanders Studio Coloring Book: Abstract Geometric Drawings & Thought-Provoking Questions, $11.69, via JaclynSanders.com

Acrylic Hair Clips

This is my absolute favorite new accessory. It all started with a Golden Retriever hair clip I saw online and of course, had to have. Then, I realized there are vendors all across the internet selling these quirky hair clips and I’ve been collecting them ever since—dogs, cats, pineapples, celestial designs, ocean animals, etc. My favorite place to find them is on Ali Express (best prices, but long shipping), but Jenny Lemons has a phenomenal selection, just at a much higher price point.

• Kawaii Golden Retriever Hair Claws, $10.52, via Etsy

• Jenny Lemons

Electronic Device Screen Cleaner

I have no idea if it’s just me but my tech screens are always disgusting. I don’t even know how they get that way—I’m not touching my screen, I’m not rubbing my face and hands against my laptop monitor, why does it look like this?

I used to work for Apple, and we used a specific brand of cleaner and I took that as The Apple Endorsement™ of The Cleaner To Use and no other cleaner will measure up. I forgot the name of the cleaner and have never been able to find a bottle that looks the same as what’s in my memory. I’ve been scouring forums trying to find out what Apple has been using recently and learned that they use the brand WHOOSH! which comes with a microfiber cloth. It takes more cleaner spray that I thought it would to really work, but once you get it on there, it looks great. Fantastic stocking stuffer for anyone with a computer or phone, so, almost everyone?

• Screen Shine Go XL, $14.99, via Whoosh!

• you can also find this on Amazon

EOS Lotion

I first came to know EOS as that company who made those weird, round lip balm balls in 2012/2013 that everyone was obsessed with even though how were we supposed to carry those around? Keep them in our pockets and have this strange lump in our pants that made us look weird? Anyways, that’s neither here nor there.

I understand that their lotion became a pick me product on TikTok and I understand why—it smells great and actually works well—so many lotions just kind of lather over your skin and leave you feeling oily—this one is thicker like a cream but absorbs into your skin so you’re not left feeling like you can’t touch anything for five minutes afterwards. There are several great scent options, I really like the Fresh + Cozy.

• EOS Body Lotion, $10.99, via EOS

• you can also find this at most big box retailers and pharmacies

Nautical Digital Prints and Downloads

My friend Rebecca makes the coolest printables that spell out obscene-but-fun phrases in the nautical alphabet. They’re offered as digital downloads that you can then print and frame yourself. You can also buy them as prints on her main website, where you can also get shirts, hats, and totes!

Rebecca also offers other great printables, like an ADHD planner and astrology coloring book activities. She takes commissions, so reach out to her! 10/10 for quality products, and 100/100 for being a great human being.

• Scorpio Panda Etsy shop run by my wonderful friend Rebeccca, get your printables here!

• Scorpio Panda’s main website, get your printed products here

• Follow Rebecca on TikTok!

SPEND A LITTLE

We covered the stocking stuffers, and we had a damn good time, didn’t we! This next category covers what I consider to be standard gift spending ranges, you know, for the people we’re really looking to invest in. Friends, siblings, that type of thing.

Owala Free Sip Water Bottle

Every year I endorse a water bottle. For the last few years, it’s been a tumbler. This year, we grow. We adapt. We change. Because our cats won’t stop chewing on every damn straw they come into contact with.

My cat, Mr. Pineapple, sees straws and some sort of feral instinct tells him he has to chew it (or else.) So while I remain a lover of tumblers (and Tumblr), it has required me to explore other drinkware solutions. Enter, Free Sip.

There’s no shortage of insulated whatever out there, but Owala actually has insulated drink containers mixed with no leak protection. These water bottles come with an inside straw that you can remove or keep in, based on whatever your deal is. It has the ability to carry it with a little handle, or, pop it back down when not in use. It comes in sizes from 24 to 40 oz.

Congratulations, Owala FreeSip, on being DYSAUTONOTHANKYOU’s 2024 Water Bottle.

• 40 oz FreeSip, $37.99, via Owala

• you can also find Owala products at Target, Dick’s Sporting Goods, Amazon, Walmart, and Urban Outfitters

BYOMA Skincare Products

I know very little about skincare products, and yet I am #BRAVE enough to recommend skincare products to you. Hear me out. Over the summer I was utterly enraptured by BYOMA’s store display and because I believe in the power of good marketing, good graphic design, good art, I was immediately like, “oh hey, this must be worth something.”

So I spent time online trying to make sure that the reviews matched up, they did, confirming that where good products go, good design follows.

I’m still trying to get in the habit of a skin care routine, but these products smell so nice, look so pretty, and just having a cleanser and a toner and SPF makes me feel cared for.

• So Hydrating gift set, $18.99, via BYOMA

• Moisturizing Gel-Cream SPF 30, $18.99, via BYOMA (because we need our sunscreen!!!)

• Hydrating body lotion, $13.99, via BYOMA

• BYOMA Mini Heroes Intro Gift Set + Bag, $25, via Target

• you can also find BYOMA products at Target, Walmart, Ulta, and Urban Outfitters

Vitassium Extra Strength Capsules

Vitassium launched these capsules at the 2024 Dysautonomia International Conference and had free samples everywhere, like the angels they are. There is no greater blessing than to have free electrolyte supplements everywhere you turn when you’re exhausting yourself, facilitating a conference on why everything you do in life exhausts yourself.

I’m a huge Vitassium fan, equal parts for the products themselves but also for the team behind them—they care so much about creating something to actually help dysautonomia patients.

• Vitassium Extra Strength Capsules, $29.99, via Vitassium

• you can also find these on Amazon

Liquid IV

I like bragging that I knew LiquidIV before it was cool. Now, everyone’s drinking it like it’s going out of style (Nara Smith is one of their influencers?) but like, I knew about it before she did.

The benefit of LiquidIV now being the biggest thing ever is that they’re developing more flavors than ever, which brings us to the delight of the Popsicle Firecracker flavor. I could never find a flavor I loved—incidentally, I only found myself loving LiquidIV when they were giving out samples at the Dysautonomia International conferences. It just hits different when you’re running on empty and they have that cooler that makes it taste ice cold. But this flavor is my dream.

• Popsicle Firecracker Hydration Multiplier, $24.99, via LiquidIV

• you can also find LiquidIV at Target, Walmart, CVS, Costco, and Amazon

Birdie

When I told my parents I was moving to Chicago, my dad informed me that I needed some kind of safety alert device. He tried to fashion up some kind of wearable for me with high visibility safety material and flashing lights (DM me if you want to see pics) along with pepper spray, but I pretty harshly rejected his original proposals. I ended up going with Birdie, which has worked well—too well. Sometimes if I drop it on the floor it goes off when I don’t want it to, and hey—it does get people’s attention! But the fact that I know I have an attention grabber helps me feel a little more secure.

Birdie also just released the Birdie+, which has a feature that will send a text to emergency contacts and EMS services if you press a certain button! Check that one out for sure.

• Birdie, $29.71, via Birdie

• Birdie+, $33.96, via Birdie

Jumpsuits

Everyone waxes poetic about your 30s being the decade of self-discovery or whatever.

So far in my 30s, as part of my self-discovery, I’m learning that my sense of fashion is just the desire to dress like I did when I was four, which means a lot of jumpsuits and rompers. I want all knit cotton, all the time.

So basically, I collect cotton jumpsuits now, whether they’re nice and long, or short versions for the summer, or pajamas, they’re great.

• ANRABESS Women’s Casual Loose Sleeveless Jumpsuits, $28.99, via Amazon

• ANRABESS Women’s Summer Casual Sleeveless Romper, $29.99, via Amazon

Ice Beanie

In the past I’ve recommended Headache Hat but that was bought out by TheraICE, so I’ve been exploring some other products just to widen my horizons.

I like the idea of the Ice Beanie because it’s not as hard against your head as the Headache Hat is, so it looks like a great alternative to try. And listen, for this photo of Mark Cuban alone, I endorse Ice Beanie forever and ever.

• Ice Beanie 2.0, $39.99, via Ice Beanie

Heating Pad

Now that we’ve frozen your head, let’s warm up the rest of your body. I remember when my mom and I first realized how useful heating pads are on my stomach pain when I was a little girl—it was a revelation. The single use, portable heating pads are incredible for when you’re out and about—definitely pick up some of those! (Pro tip: if you’re looking for one for your stomach, get the lower back sized ones—more coverage.)

However, if you’re lucky enough to be at home and next to an outlet, you’re going to save so much money with a reusable heating pad—plus you’ll be able to get a much larger one. There’s so many options—you can get ones that you can wear like vests, ones that are like miniature blankets, the options are endless. You can even pay for them with your FSA/HSA money.

I found so many cool options that I want to share.

• Good Housekeeping’s 9 Best Heating Pads of 2024

• ThermaCare Heating Pads (you can also find these at basically every pharmacy, grocery store)

• RENPHO Heating Pad for Back Pain Relief, $44, via Amazon

• Manta Fire/Ice Bundle, $58, via Manta

• Good Housekeeping’s 8 Best Electric Blankets of 2024, in case you wanna go really big—also if you have a pet, they will probably love this

pro-tip: Sunbeam continually shows up as a great brand when it comes to heating pad products, so if you see Sunbeam, you’re probably picking a good choice!

SPEND A LOT

Oooh, big money big money! Everything here is $60+, and if you’re in that price range, I assume it’s for the closest people in your life, or maybe a handsome strange you’re trying to impress!

Custom Hand Cut Collage

My amazing friend Amber makes hand cut collages and they will rock your world. I have several pieces of her art hanging in my apartment along with stickers of hers on water bottles and journals—I know I’m biased because she’s my friend, but before I even really knew her I was blown away by her art and her talent. Her art ranges from commentary on religion and identity to relationships, divinity, the supernatural and ethereal.

Take a look through Amber’s Instagram and see if there’s something on there that you already love, she might have a print you can buy!, or, if you’d like to get a custom collage, she can absolutely work with you. She’s done the most amazing collages in memoriam of family members who have passed and they are so thoughtful and beautiful—it would be the most fitting tribute.

• Amber’s Instagram (and you can email her at ramos.amberlee@gmail.com!)

Bose Soundlink Speakers

I have the older generation of this and absolutely love it. I use it as a speaker for my bedroom in my parents’ house since I didn’t have a good sound system here (at my apartment in Chicago I usually just stream music via my television). The Soundlink has good battery life—I need to charge it every other day or so—and I love the way it looks. I haven’t had any issues pairing the Bluetooth with my phone or computer which is a huge plus, because Bluetooth is so temperamental sometimes.

• Bose SoundLink Flex Portable Speaker (2nd Gen), $119, via Bose.com

• Grab a carrying case for it on Amazon!

Electric Multicooker

Are we still in the InstaPot Era? Yes? No? I’m hoping for “no” because they terrify me. My past roommate Amy had one and she was so brave—she knew how to take all of the pieces apart and clean them and she wasn’t afraid of everything exploding from pressure and I’m so glad she wasn’t afraid, because she made really good taco soup and let me have some.

I put this Electric Multicooker on my wishlist because (1) it looks way easier to use than an InstantPot, (2) I really like Drew Barrymore’s kitchen line at Walmart. I have her toaster and Airfryer (another great gift for people, by the way), and when I use them I like to pretend to be Drew Barrymore ala Kate Hudson’s impression on Saturday Night Live.

I love a slow cooker, especially when we’re throwing pulled pork or pulled chicken in there, so I think this is a great gift for anyone who has to cook (so, everyone?) and doesn’t already have some kind of product in their life.

• Beautiful 10 in 1 6 Qt Electric Multi-Cooker, by Drew Barrymore, $59, via Walmart

WooZoo Pedestal Fan

I don’t have air conditioning in my apartment and I don’t have temperature regulation in my body so fans are very important to me. I was looking for a couple of new ones this summer and came across the WooZoo Pedestal fan which is now one of my all time favorite purchases. It’s so powerful, it’s not outrageously loud, it has tons of ways to oscillate, and comes with a remote.

WooZoo also has a great selection of desk fans which are also excellent quality and would make stellar gifts to your temperature regulation challenged loved one.

• IRIS USA WooZoo Pedestal Standing Fan, $129, via Amazon

• you can also find WooZoo products at Best Buy, Costco, and the WooZoo website IRIS USA

Air Purifier

While we’re on the topic of air and breeze, did you know that the air we breathe is important to your health? Yeah! It’s true! Wild stuff.

Unless you’re living in the middle of the country, surrounded by hundreds old trees and fresh gardens, you could probably benefit from an air purifier, especially if you’re living with any kind of chronic condition. Especially if you have a pet. I love Mr. Pineapple, but damn that little guy sheds.

My ultimate fantasy is to get one of those Dyson air purifiers because I’m such a Dyson fan girl (ask my friends about my “I want to be a Dyson Caliber Woman” speech), but guess what! You don’t need a Dyson air purifier to have clean air.

This Clorox air purifier has phenomenal reviews, and I feel qualified recommending it as (1) I am also a Clorox fan girl and (2) I have a friend of a friend who works at Clorox and she’s pretty damn smart—they have pretty high standards there.

• Clorox Large Room True HEPA Air Purifier, $149.99, via Clorox

• you can also find air filters for other sizes at Clorox’s website, and find these products at Amazon

Weighted Blanket

Somehow, in all of my years of gift guiding, I have neglected to mention the glory and beauty that is the weighted blanket. I’m sure we’re all familiar with the benefits—it helps reduce anxiety by regulating the nervous system, reducing cortisol, increasing serotonin—while keeping you cozy and warm.

• I don’t feel strongly one way or another about weighted blankets, I think they’re all excellent, so I recommend checking out Real Simple’s buy guide on the best weighted blankets!

Quince Gauze Blanket

If you’re looking for a less heavy blanket to give, my mom got me one of these gauze blankets by Quince. These feel very similar to swaddles for newborns, so you can roll yourself up like a burrito and really take care of your inner child when you get one, you know, like a healthy normal person, not weird at all.

• Organic Airy Gauze Blanket, on sale right now for $79!, via Quince

Anything by Min and Mon

This is one of those products whose quality I can’t speak to personally, but I’ve been following this brand for years and I’m in love with them. They are a family owned company from Colombia and have been putting out the coolest leather handbags, wallets, and accessories. They are an investment, but if you’re looking to seriously WOW someone, take a look at their Gift Guide! What I love so much about them is their use of color and character—everything has so much individuality and so much to say.

They also have much more budget friendly gifts, like these amazing tiger socks, cute enamel pins, and keychains.

• Min & Mon

• Portland Leather also has slightly less expensive leather goods, check those out!

Bidet attachment for your toilet

We’re all adult enough to talk about wiping our butts casually, right? We don’t need to giggle like school children? (I’m probably still going to giggle like a school child.)

Not to be uncouth, but regardless of whether or not you have gastrointetinal problems or not, a bidet attachment is just a good idea. You’ll feel cleaner. Use less toilet paper. Feel a little luxurious!

They are common use in other countries, so get a little international!

After research, I’ll be asking for the Tushy this year, and I think buying someone a luxurious toilet seat is the best way to say, “I love you, and your butt.”

• TUSHY Classic 3.0, on sale for $89, via TUSHY

• you can also find these on Amazon, Walmart, and even CVS

Portable External Hard Drive

As previously mentioned, many lifetimes ago, I used to work for Apple, and the most painful thing we experienced at the store was when customers came in because their computers lost all of their data.

Every time I sold a computer, I begged customers to buy a backup hard drive and actually backup their data weekly, even if they didn’t buy it from me. I stand by it—if you’re using your computer for anything that matters to you, for the love of all that is holy, please, back up your stuff.

My computer? Full of a lot of unimportant stuff, and a lot of photos I would be devastated to lost. Which is why I have these cute, tiny, baby hard drives to do back ups.

Great price, works great, and hey you might save a life.

• SanDisk 1TB Extreme Portable SSD, $92, via Amazon

• you can also get this product at Best Buy and other tech vendors

Factor Meals

I’ve had a really difficult year with my mental health. During one particular bout, my eating habits were the word they’d been in years. My bestie Erin was so concerned and sent me a voucher for Factor Meals so that I could order pre-made meals sent to my house—all I would have to do was heat them up.

It was such an act of love.

I’m a hugely picky eater but I was able to find meals that worked for me, I even tried some things I normally don’t eat and ended up liking, and felt so cared for.

So it’s a great gift to either give to someone, or to give to yourself. Highly recommend.

• Factor Meals

Subscription to…

And you don’t need an explanation from me on why these other subscriptions are great, I’m just gonna throw these out there for ya. NOTE: all of these are my personal referral links, so I would receive a kickback if you were to use them, but I do like and use all of these services.

• Instacart

• DoorDash

• Laundry services

• Housekeeping services

Whew! Now that’s over!

As a reminder, the most important thing when buying a gift for someone is that you took the time out of your day to think about them. Price tags don’t matter. If you can’t afford to get anything, write a card—that stuff matters. I keep every card people give me and go through them. Putting pen to paper to wish someone well is meaningful, and loving.

This year’s gift guide is dedicated to my loyal POTS Pals, the most wonderful angels, particularly to my guide’s greatest supporter, Dr. Amanda!

Thank you, reader, for being a part of 2024 with me. It’s been a really hard year, and I’m relieved and grateful to bring it to a close.

Please keep yourself warm if you’re somewhere cold, and cool if you’re somewhere warm,

Please enjoy your time with loved (and liked!) ones,

Please know that I am so glad to have you in my life in whatever capacity we know each other,

And please enjoy some rest, and some cookies, this holiday season, whatever holidays you do, and don’t, celebrate.

You are a joy.

All of my love,

I arrive at each of these doctors’ offices/locations in pretty poor shape with my standard POTS flare symptoms—bad tachycardia, dehydration, vomiting, dizziness, and with hot/cold flashes. I’m shivering, have brain fog, and I’m so utterly fatigued that it’s hard for me to move.

I’m going to analyze how each of the doctors on these shows would respond to me, my symptoms, and if they would end up being able to diagnose me. I’ll give them 4 ratings:

• Experience: What was my time at their facility like? How was their bedside manner? Did something outrageous happen?

• Expertise: How much did the doctors know?

• Extra Mile: Did these doctors go so far above and beyond for me that it was completely unrealistic?

• Diagnosis: Did they or did they not figure out that it was POTS?

I arrive at the ER and three surgical interns have been assigned to my case even though there is no need for a surgeon. They are all furious that there is no need for surgery. Two of them are insistent that I’m just having a panic attack and want to call Psych, which they think is a fake specialty anyway, but the other has a fun idea that if they run enough tests on me, they can find a reason to do surgery on me. They are monsters who only see cadavers, not patients, and only want to slice and dice. More is said about how this is only a Psych case and doesn’t matter. (Every single intern on this show is evil.)

While they’re running tests on me, Meredith Grey gives a voiceover about the futility of life, and we see no fewer than six people have sex and at least one person commit adultery, but everyone is super hot so it’s totally OK that it’s happening.

A resident finds out that the interns are literally torturing me and rescues me from their horrors. They take on my case and find it puzzling and actually want to help me. They start running the correct tests, and figure out that I have POTS, but they deliver the diagnosis in a slightly inaccurate way that provides mild misinformation to the general public, similar to the way they did with their episode on Ehlers-Danlos Syndrome in which they implied that it’s so rare that a Chief of General Surgery would only have encountered one case in a 30-year-career. (Hint: some forms of EDS are incredibly rare, but EDS as a whole is not rare at all.) 

My visit wraps up with a montage of a super high level doctors who, in the real world, wouldn’t even blink an eye at me, telling me how to treat this condition while the perfect song plays in the background.

Dr. Grey does another voiceover, maybe this time it’s something super poetic where she pulls together something about life (again), the function of the autonomic nervous system, the hot people who had affairs earlier in the episode, literal physical pots, POTS the illness, all that good stuff. If anyone could do this speech, it would be a Shonda Rhimes character.

• Experience: 3/5, the original interns who work on me are incompetent and evil, but once you get past them and have some attendings and residents, the treatment is pretty good! Don’t you know this is a world class program, one of the top in the world? (Drink every time they say program.)

• Expertise: 4/5, it’d be a 5 if they didn’t over dramatize how rare some common things are.

• Extra Mile: 5/5, the music on this show is so good and while it’s a function of the show and now something that plays for the patient, I still consider it an Extra Mile Factor.

• Diagnosis: POTS! They did it. They figured it out.

I go to the free clinic at Princeton-Plainsboro Teaching Hospital and for some reason my case is escalated quickly to Dr. Gregory House’s expert team of medical detectives. He and his lackeys begin running every single test in the book (I will never financially recover) and they begin throwing out very complex diagnostic hypotheses and mention lupus about five times, to which Dr. House answers, “it’s NOT lupus” in increasingly aggressive degrees of anger.  

House goes off to flirt with Dr. Cuddy and bully Dr. Wilson while the trio o’ lackey docs are left to their own devices, probably suggesting something like showing up at my house and doing investigative work to determine whether or not I have the bubonic plague by digging through my trash. House walks around popping pills and being mean to people, and we eat that ish up.

After the most ridiculously unnecessary tests, House finally comes up with a brilliant monlogue on how and why I have dysautonomia with some very stunning visuals that play showing the inner workings of my body. We actually witness how my blood vessels don’t contract when I stand up, and what blood pooling looks like. It’s extremely cool.

House is nice to me for a very brief moment and it’s sincere, and I thank him, and then he’s mean again and walks off.

I am then left bankrupt.

• Experience: 0.5/5, my body feels ravaged after all of these tests have been run. Did I mention that I am bankrupt?

• Expertise: 3/5, House is incredibly smart, probably the smartest, but why was every test in the world run when all I needed was a tilt table test to figure out my POTS diagnosis? Remember how I’m bankrupt now?

• Extra Mile: 0/5, they went too far on the extra mile to the point that I am bankrupt, I showed up at the Free Clinic asking for help and now I have to sell all of my organs to buy food, because I’m bankrupt.

• Diagnosis: POTS. Yeah. They figured it out. After almost killing me and bankrupting me.

I am inexplicably seen by a gynecologist for my clearly cardiology/neurology problem. Rag tag, rough around the edges, but lovable Nurse Morgan Tookers makes incredibly invasive comments but ends up helping me find out that I have a meds interaction that’s causing some very serious side effects that are way worse than the benefits of the medications.

He and I end up laughing and then he shows me his dope stomach tattoo. 

Because I’m at a gynecologist and I’m dizzy and throwing up for no clear reason, I’m given a pregnancy test and when it comes back negative, Dr. Danny Castellano gives me “Old School” treatment which consists of asking me over and over again if I’m sure.

Danny goes to the back and gripes about his intolerable patient who won’t admit she’s pregnant and won’t subject herself to another pregnancy test. Dr. Mindy Lahiri reviews my chart and says in her tell-tale voice, “Danny, I think this woman has POTS!” Mindy of course has this hypothesis because POTS affects women by a ridiculous margin, and she is all about her women clients at their gynecological practice and her fertility clinic.

Dr. Lahiri comes to evaluate me and do a Poor Man’s Tilt Table and confirms it. She helps me set up an appointment with a cardiologist, and arranges for me to be her new patient and come in for my GYN check up.

Later, Danny and Mindy make out, but I don’t get to see it. Dang it.

• Experience: 4/5, for Nurse Morgan, the sexual chemistry, and the bright colors, but also Dr. Castellano was sort of a jerk despite being so hot

• Expertise: 5/5, for Mindy, and then Danny comes around and is like “wow, Mindy is really something” while he watches her do the Poor Man’s Tilt with me

• Extra Mile: 5/5, they helped me set up appointments!

• Diagnosis: POTS. Damn! They did everything here, despite it being a gynecologist’s office. It’s almost like any doctor can identify POTS if they listen to the patient, know what to look for, and use simple tools.

Much like Grey’s Anatomy, my visit to Sacred Heart will be filled with voiceovers. I arrive at the ER and am immediately treated to the highest standard of care by the phenomenal nursing staff (shout out to my girl Carla!) but am quickly introduced by the silly and charming Dr. JD Dorian who is convinced that I just have a hangover, maybe one or ten too many appletinis (JD’s drink of choice). JD grows concerned that maybe I have an alcohol problem, and the episode grows more serious.

I know you’ll say, “but Shannon, that’s the general premise of the episode Grey’s did on EDS” and yes, you’d be right, but the basis of this concept is built on the idea that JD would turn to Dr. Cox for guidance and Dr. Cox would get all huffy and puffy, say “newbie” a thousand times and give him a lecture-rant that ends with advice on being a good doctor. 

Dr. Cox would end up diagnosing me with POTS and tell me everything’s going to be OK with a twinkle in his eye and walk off in a huff because he can’t show too much compassion, and then JD would reassure me that there’s hope ahead for me and say “we’re going to get you some help” in a very gentle voice and give me some pamphlets on patient support groups (like Dysautonomia International, obviously.)

Again, like Grey’s, fantastic music would play throughout my visit, but unlike any of the other shows, I’d see very silly hijinks such as JD and Turk dance around and act like boyfriends.

• Experience: 4/5, I’d get to watch the hilarious antics of JD and Turk during my visit and it would help me endure feeling like garbage

• Expertise: 4/5, they figured it out, didn’t they?

• Extra mile: 3/5, I love this show, but most of the extra mile is done with JD sucking up to Dr. Cox, and you know what, maybe that’s OK in the end.

• Diagnosis: POTS!

I arrive at Cook County General Hospital and wow is this hospital in a nebulous, non-specific but very central part of downtown Chicago!

I’m at a serious disadvantage in the world of ER. The show begins in 1994, a single year after postural orthostatic tachycardia syndrome was first published in 1993 (shout out to Dr. Philip Low.) The chances of any of the doctors on ER knowing about POTS is a million times lower than it is in any of the above fantasy hospitals, but still a trillion times higher than any average, real life doctors at the time.

The good news is, at Cook County General Hospital, they’re aware of dysautonomia and have tilt table tests they’re able to run.

For the purpose of this thought experiment, I’m running two scenarios.

Scenario One – 1995/1996

I arrive in one of the earlier seasons, when Mark Greene is an attending, around 1995/1996. The doctors quickly evaluate me as a drunk or a drug addict, given that most of the ER patients they take in are either drunk, drug addicts, or both. I swear to them up, down, right, left that I’m not on drugs, and even more-so that I don’t want drugs, I just want help.

Dr. Greene hits the hospital library and reads up on different cases. He doesn’t end up finding anything, but he puts me on IV fluids and I feel so much better. They’re worried that I have some sort of disease so they set up an action plan and run tests on me, all coming back inconclusive. (“CBC chem 20!”)

Dr. Greene tells me to ask for him when my test results come in but I walk away without a diagnosis as there’s little to no medical research at the time. He’s an ER doctor, he’s already done more than he was expected to anyway, but that’s the spirit of the show–going above and beyond.

Scenario Two – 2008/2009

I arrive at the ER and am being treated by a much older, more haggard looking Dr. John Carter than we once knew at the beginning of the show. I’m presenting with those same symptoms, and he runs the same routine, of checking me for drugs.

All of my screens come back negative, and he’s puzzled. He asks me about exercise and de-conditioning. He recently read some research papers. He puts me in a room and goes to a computer–y’all, computers are a thing now!!!, they hardly were at the beginning of this show. He’s able to do some research and come back and order a tilt table test.

My test confirms POTS. He recommends that I go to a cardiologist but can’t give me a ton of advice beyond that, this is still new to him too. He gives me some IV fluids and when I’m done, wishes me luck, and tells me to ask for him next time I’m in the ER.

• Experience: 4/5, the doctors were kind and did their best.

• Expertise: 4/5, the doctors have outstanding knowledge for the time

• Extra Mile: 5/5, the research! Running tilt tables! All as ER doctors! My only complaint is that they set unrealistic expectations for what you’ll get at an Emergency Room–these doctors are doing anything for you even though they’re supposed to “treat you and street you.”

• Diagnosis: POTS, but in 2008/2009. The early 90s had so little information out there. This show was pretty wild, but not so wild to be able to diagnose an illness that was pretty much just given a name.

So, all of them figured it out, except for 1996 ER.

Is that cheating?

No, because the entire ethos of medical shows is that they figure out the illness, the story is how they figure it out. (And the friends we make along the way.)

So now I went over my favorite medical shows—which ones should I do next?

I wish you medium things, like finding money in your old winter coat pocket, getting a row of seats to yourself on a plane, someone cleaning your house for you.

I wish you great things, like you get the job, you get into the school, the fundraiser is successful, the house is yours.

I wish you extraordinary things, like the medicine is working, they came back to you, the war is over.

I wish you every thing that is good, because you are good to me, and we’ll get through this together.

Happy Holidays. Merry Christmas. Joyeaux Noel.

You know what my favorite thing is this holiday season? Procrastinating things to the absolute last minute. And that’s how, dear reader, we find ourselves here, MERE MINUTES ‘til Christmas, with me rolling out yet another Favorite Things/Gift Guide even though every single responsible person has purchased their gifts already.

But maybe you’re like me, and you save your shopping for the 72 hours before Christmas or the Non-Denominational Winter Holiday of your choice. Whatever you do, I hope it’s a joy, I hope you think of me, mostly because I’m a narcissist and gift giving is my love language. Provided that it’s last minute.

The gift I have to give to you is a list of products I like, because I am broke out of my mind. Broke, because I bought a lot of stuff this year, and have some opinions on what’s good and bad. Broke, because I’m irresponsible. Broke, because I adopted a cat this year, and in the first two weeks of having her, I had to spend an outrageous amount of money at the vet for them to tell me, “yeah it’s probably nothing but we can’t rule everything out for sure unless we run more expensive tests” and she’s a 14-year-old cat and IDK if I can make that type of commitment to a cat who is as old as all of my high school regrets.

Provided that it’s seconds ’til Christmas, everything on this list is something you can acquire between now and Christmas. These are things Amazon can rush to you. These are things you can walk into Target and get right now. These are craft kits that Michaels and JoAnns has millions of. These are things you can grab at Athleta and Old Navy. These are always in stock at Apple or Best Buy. These are electronic gift cards, these are books at Barnes & Noble.

The world is a supreme nightmare right now and so much is terrible and there’s nothing I can do to fix it, so I will help you with your down to the wire “oh my god I forgot he’s bringing his girlfriend to Christmas Eve dinner” shopping, provided the girl he’s bringing has great taste and/or has some sort of predilection for autonomic dysfunction.  

I love you and I hope you’re going to do something nice for yourself this December. I hope you get drunk off eggnog, I hope you burn a hole in your mouth because you ate that much peppermint candy, I hope you fall into a raclette cheese coma.

It’s the holidays.

It’s whatever.

My favorite things.

And yes, most of this stuff is from Target, get over it!!! I’m a millennial woman!!!

40oz Tumbler by Owala

I am legally obligated (yes! The federal government passed a whole damn law!) to kick these posts off with my Water Bottle of the Year. 

I know I swore forever and ever that I was a Stanley Cup girl and I would care about no other water bottles/thermoses/tumblers and put no others before thee, that this was my one true love, that I was done for life, that this was it for me–

And then I kept spilling it everywhere and I spilled water in my bed for the 500th time and the influencer girls on instagram whose sole job it is to make me want to shop at Target (as if I needed to be influenced!) got me to buy an Owala 40 oz Tumbler and y’all that’s this year’s bottle.

It’s all the thing Stanley cups do, plus

• Doesn’t spill

• Has a more colorful design

• Less expensive

• You can actually acquire these without fighting to the death

• DOESN’T SPILL

• Makes me look less like a Utah influencer mom wannabe

I have also heard absolutely phenomenal things about the 24 oz FreeSip, but I don’t believe in a water bottle without a handle anymore. 

You can get the Tumbler and the tinier FreeSip at Target, Amazon, Best Buy (?!), REI, apparently you can buy them on DoorDash and they’ll just bring it to you. It’s 2023. It’s The Future.

• Owala

• Amazon

• Best Buy

• REI

• Target

Headache Hat

I am in a decades-long journey to figure out if the headaches I get are migraines. No one can figure it out, least of all, me. It would be wise to see a neurologist, but who has the time when it requires (1) getting out of bed, (2) getting dressed, (3) leaving the house, especially in the cold of Chicago? No thank you.

So instead of doing anything proactive about my problems, I’m doing something reactive about my problems, and that’s getting the headache hat.

I won’t lie, it hurt like hell when I first put it against my head, and that’s because you’re just putting hard ice rocks around your head very tightly. I put on a hoodie and wrapped the Headache Hat around the hoodie so it was cushioned–that worked much better for me until the ice cubes melted a little and got all slushy. 

Pro-tip: pair your Headache Hat gift with a subscription to Migraine Buddy App – your recipient will actually be able to function.

Oh, and don’t worry if someone else gets a headache hat for your recipient you have in mind! Both my brother and dad got Headache Hats for my mom this year, and she loves having multiple!

• Headache Hat

• Amazon

• Migraine Buddy App

Friendship Bracelet Making Supplies

So you know how Taylor Swift sang “make the friendship bracelets take the moment and taste it you’ve got no reason to be afraid” and triggered a 500% increase in jewelry-making kit sales because that’s the magic of Taylor Swift?

I fell victim to the bracelet making craze because of course I did how could you not in this climate and I learned that my brain actually shuts down intrusive thoughts while I make them, so thanks for the reduced cost therapy, Michaels Crafts, and do you take FSA as payment?

I have purchased several different kits and supplies since the craze started and since I don’t think this is going anywhere, I have my favorite ones shared here. It ultimately all comes down to what colors and styles of beads you’re looking for, and if you become a bead elitist, you might end up wanting to seek out the fancy bead stores in your area (yes! Such a thing exists! Stores dedicated to beads and beads only!). But the kits I found have been tremendous fun and enormously satisfying.

• Glass seed beads

• Rainbow round beads

• Gradient pearl beads

• Different letter color beads (white, gold, rainbow, etc)

• Extra bead containers

Arts & Crafts Kits

While we’re in the realm of crafting, craft kits are a drastically underutilized gift to give. My friend Amber started hosting craft nights at her house this year and Lyndsi brought over a paint by numbers that we all contributed to that was so soothing to work on. I also picked up a quick gem art kit on clearance that I did on a weekend when I refused to leave the house because it was too hot to exist and I felt like I was eight-years-old, in the best way.

• Skating Scene Paint-by-Numbers Kit by Artist’s Loft at Michaels

• Gem Art Poster Unicorn/Rainbow by Mondo Llama at Target

Salutation Stash Tight by Athleta

I work from home, and, I’m lazy, so the majority of my weekly wardrobe consists of yoga pants. 

• feel a little bit compressy (although it’s not to the level that actual POTS patients need for compression though, sorry guys) but not too tight that it limits restriction of leg movement (think: Dennis and Charlie in It’s Always Sunny in Philadelphia)

• have POCKETS

• are smooth and silky

• have good stitching, no loose threads

• use fabric that doesn’t start pilling after 5 minutes of wearing

If you’re looking for a less expensive dupe, I’d go with Old Navy’s PowerSoft Leggings which are pretty great, but offer less compression.

• Salutation Stash Tight by Athleta

Airpods, Earpods, whatever 

I am not one of those “audiophiles,” for the primary reason that it’s a disgusting thing to call yourself. But secondarily, I am not smart enough to learn audio engineering and the science behind what makes good sound sound good.

I cannot give you expert advice on what the best headphones are, on what makes them good, on why you should buy one over the other.

I can tell you that Apple AirPods are very popular and I do like having a wireless option because I no longer strangle myself while trying to manage my headphones, coat, and backpack. But remembering to charge my headphones is a challenge, so there’s nothing wrong with some classic wired headphones. 

So I carry both of them with me in a very tiny carrying case I got years ago, and they sound good enough to me! If the Shannon Linford “good enough” standard works for you, the following is what I carry in my backpack, and here is the best price I could find!

• Apple AirPods (2nd Generation) with Charging Case (same price at BestBuy, Walmart)

• Apple Wired EarPods with Lightning Connector

Anything Written by Kate Bowler

I was introduced to Kate Bowler’s writing a couple of years ago by Shira, and I’ve been in love ever since. 

Kate was diagnosed with stage IV cancer at the age of 35 and was told time and time again that she was incurable, but she and her family did everything they could to seek treatment.

What I love about her is that she vehemently rejects the platitudes of “Everything Happens for a Reason” and prosperity gospel and “Best Life Now!” and instead believes that we can find some joy in our really boring and sometimes really shitty lives. 

She gets me.

She has four books out now on this very topic that I think would be great gifts for anyone going on a similar journey, or anyone who subscribes to the belief that life doesn’t have to be perfect to be good, and has another one coming out in January, Have a Beautiful Terrible Day, that you can pre-order.

• Everything Happens for a Reason (And Other Lies I’ve Loved)

• No Cure for Being Human (And Other Truths I Need to Hear)

• Good Enough: 40ish Devotionals for a Life of Imperfection

• The Lives We Actually Have: 100 Blessings For Our Imperfect Days

You can find all of these books on Amazon (linked above), and in many local bookstores in your area.

Kate also has free resources on her website about different topics, one of which being illness, that you can check out here.

Walk into Target and buy literally anything

OK HOLD ON DON’T CLOSE THE WINDOW.

I know I’ve been pushing a lot of Target gifts already. And I know this piece of advice already sounds so non-specific that I’m basically cheating when I offer it to you, but Target just throws so many stocking stuffers and gift ideas to the front of the store that they are handing you gift ideas, and I know, because I have bought holiday gifts every time I stop by to pick up a prescription. (Note: setting my default CVS to be inside of a Target was the best idea for shopping but the worst idea for my wallet.)

But here are just some of the things you’ll find within 15 feet of the entrance to the store that would be amazing little stocking stuffers:

2024 Office Supplies by Opalhouse (each of these is only $5!)

• 2pk Paper Desk Notepads

• 96pg Ruled Set of Three Journals

• 2024 Undated Planner

• Fresh Ideas Notepad

Cute Tech Accessories by heyday

• Apple AirTag Silicone Keychain

• Apple AirPod Gen 1/2 Case with Clip

• 2-Port Wall Charger with 6′ Lightning to USB-C Cable

Random cute stuff

• 16oz Stoneware Monogram Mug

• 3.5″ Unscented Bubble Sculpture Candle 12oz

• Glitter Claw Hair Clip

Membership subscriptions that are actually worth it

Maybe you don’t like buying tangible things, and that’s OK. Maybe you’re one of those minimalists who believes in gifting experiences rather than things. I think that subscriptions count as experiences, and these are experiences that I enjoy.

• Instacart (the experience of never having to go grocery shopping again)

• Spotify (the experience of listening to music, and now, audiobooks!)

• Netflix, Hulu, Max, YouTube Premium, Dropout, (the experience of watching mindless entertainment)

• DoorDash (the experience of not cooking, because cooking sucks)

Note: some of the above links use my share code, so if you use them, I might end up receiving a kickback. 

AND THROW SOME CANDY IN THERE

I’m not going to bore you with a flowery description that you’re not even going to read on this one. Ghiradelli Mint Chocolate Mint Cookie Squares are their best product, it’s only available at Christmas, and I love them so much.

Equally good if you’re looking for a truffle experience: Lindt Lindor Peppermint Cookie Truffles.

And just a side note, there is a wonderful gentleman named Bryan who reviews Lindt chocolate (Ghiradelli falls under the Lindt umbrella!) and he is an absolute joy and someone you should consult for all chocolate reviews.

BUT MY FAVORITE THING OF ALL?

A donation to Dysautonomia International.

Because:

• they’ve funded millions millions of dollars of research grants on POTS and other forms of dysautonomia (what I have!)

• they host education events for patients, caregivers, and physicians across the world

• they advocate for dysautonomia patients

• they teach dysautonomia patients how to advocate for themselves on the micro and macro level

• they host lobby days and lobby for dysautonomia research

• they help lead lobbying efforts for dysautonomia patients in US Congress

• they host support groups in all 50 US states, in several countries, and for specialized groups (like teens, caregivers, spousal groups, etc!)

• they’re raising money to research Long COVID

• they host weekly discussions on tips people have learned to help with coping!

• they have a physician finder database

• they have a huge video library full of information about dysautonomia

• they’ve introduced me to some of my favorite people on the planet

IDK MAN, DO YOU WANT MORE?

PLEASE GIVE HERE. I WILL LOVE YOU SO MUCH.

Alright y’all. It’s been a year. We’ve probably got what, 4 minutes left ’til Christmas now at this point?

Thanks for being here. I hope you found something helpful. If not, check my tag ‘gift guides‘ to find past posts on the topic.

If nothing is helpful then idk, just slip your gift recipient a crisp $50.

But really, that Dysautonomia International donation is the best way to go.

Merry Christmas. Happy Holidays. Happy New Year.

Be safe.
Stay warm.
Be COVID conscious.
Pray for those in need.
Be there for those in need.
Be thankful for what we have.
Be well.
I love you.

I have memories. I have flashbacks. I have a few photos.

So this happened. There is no rhyme or reason to this, just the need to share it, because this is my beginning. It’s disjointed. It’s just memories. That’s it.

This is part of what happened in 2003.

And to have made it 20 years,

is so big.

TW: disordered eating, chronic pain

#

Getting my first small flare ups and figuring out walking helps sometimes. My saint of a Fourth Grade teacher writing a hall pass for my best friend and me to run errands around the school and let me walk for as long as I wanted. The implicit trust my teacher has in me to listen to my body, when I am only 10-years-old. The way she can look into my eyes and understand me. The way this kindness and trust is so rare, so I hold to it tightly.

Starting to flare a half hour before my Virginia History standardized learning exam. The vice principal coming into the classroom, leaning down over me, imploring me to push through the pain because the test is too important to miss. My angel teacher kneeling down next to me, telling me I’m going to do great, that there’s nothing to worry about. Crying because I couldn’t care less about the test, I can do this in my sleep and still score higher than most of my classmates, but my body is acting up for no reason at all. I am in so much pain I can’t breathe. Can’t breathe or don’t want to breathe. I ask for my mom to take me home.

The first Big Flare. I’m in searing pain but still begging Mom not to take me to the hospital, because I need my bed and my bathroom and my blankets. The sound of her on the phone with the nurse on call at the pediatrician’s office. Mom not wanting to admit that it’s better for me to stay home. (I win, at least for tonight.)

The condensation on the 32 oz plastic reusable Baja Fresh cup filled with ice and Gatorade on the foldable tv table in front of the day bed. Mom saying “drink” every few minutes, but what she’s really saying is, “drink this or we’re going to the hospital and you’re getting an IV.”

The smell of the antiseptic at the doctor’s office. Trying to decide if I should sit in the Well Child Waiting Room or the Main Waiting Room because I’m very sick, just not contagious.

The way my sandals stick to the floors when I walk down the hallways. The shame before I step on the scale. The pride when the number is lower than last time. The dread when I hop up on the exam table because I don’t know what’s in store for me.

Walking across the courtyard to the phlebotomist. Asking for the smallest needle they have. Thinking how odd it is that every doctors’ office is always in something called a suite, like it’s some kind of hotel I see on The Travel Channel. Is this new or just new to me?

Mom asking if I stole her portable radio again (yes) and if I could give it back to her (no). Listening to Top 40, non-stop. Memorizing every song. Probably being too young to listen to and know the lyrics to these songs. Singing anyway because it distracts me. Taking a liking to Jason Mraz above all else.

Sleeping on the floor of my bathroom. Watching the sky change color in the skylight.

The taste of crushed up medicine in yogurt because I still don’t know how to take pills. Trying all of the chewables on the market, most of them chalky, some of them weirdly creamy, all of them gross.

Dad’s announcement that he’s in possession of Baby’s First Prescription when he comes home with my first daily sublingual medication. Everyone in the family has some sort of daily medicine. This is my rite of passage.

Hearing Mike frantically run upstairs because I’m screaming so loud that he thinks, This is it! My little sister is dying. I’m not dying, I’m wishing I was, because I didn’t know bodies can hurt this much without breaking to the point of ending.

Mom holding me like a baby, rocking me to sleep in the blue recliner, even though I’m only a foot shorter than her.

The pain hangover leaving my limbs shaky, head dizzy, knees weak.

Wishing I can tell people, but if I say “stomach problems” they’ll think it’s gross to hear about or not a big deal and I’m complaining about nothing.

Wanting to tell people, but they’re never going to understand the severity of my pain, the depth of my trauma, the hours and days I’m losing, the number of invasive doctors I’m consulting, the tubes of blood being taken from me, the disgusting medications I’m trying, the food I’m giving up.

So desperately longing to eat a slice of pizza at school, at sleepovers, at home, at church parties, at everywhere, but knowing the consequences that await me if I do, so deciding to eat nothing instead.

Eating nothing.

Eating something and then immediately getting sick, so my body eats nothing.

Over, and over.

New clothes because the old ones are too big now. More new clothes because the old new ones are now too big.

The doctor saying to me, point blank, “No more losing weight.”

Consciously responding in my head, “No.”

The awe of watching my organs expand and contract on the ultrasound, and finally comprehending why doctors and nurses and Mom are always compelling me to breathe.

Remembering to breathe.

Mom picking up my best friends, taking us to see a movie, to have dinner. Having fun. My stomach behaving. Feeling hopeful that we can do this, that it won’t all be awful forever.

Getting ready for the new school year. Planning my new outfit. Organizing my school supplies. Making plans. I am going to be great.

Coming home my first day of Fifth Grade asking why dad is home early and it’s because he lost his job. 

Trying to remember to breathe.

Literally nothing left in the world making any sense at all anymore, but at least I get to quit piano lessons.

Mom and Dad showing us brave faces and telling us we are going to make every decision together as a family, everyone gets a vote, including the dogs.

Learning to swallow my first pill, 25 mg of Paxil. 

#

I am currently in the middle of a very intense therapy journey exploring long held issues with food, control, and an untreated eating disorder I had as a child. All of this therapy work has inspired dozens of pages worth of writing, and this piece is the result of hours of reflection. This doesn’t relate so much to dysautonomia as much as it relates to the general human experience, and to the vulnerability of children around harmful adults. I primarily discuss disordered eating and negative body image, so if these topics and themes are triggering for you, SKIP THIS, and watch something lighthearted and unrelated, like this Tig Notaro video.

Names have been changed.

+

Rachel was the most Well To Do of all of my friends in Oakton, which, if you’re unfamiliar, is one of the most Well To Do cities/towns/census-designated-places in the country. Oakton is where congressmen and lobbyists and “state department” employees and actual state department employees settle down to raise their kids. And, being people that fit in with the upper echelons of society, the Marches built their $2.1 million house in Oakton, so that Mr. March could have a quick commute to the airport for his gig as a private pilot.

It should’ve been easy to detect that the family was bad news from a thousand miles away. Mrs. March was one of those volunteer-at-the-school-a-little-too-much moms—the first 50 times, God bless you!, but the next 300 times we’re on to you, Evelyn. There must be only so many times you can buy your kids’ teachers Panera before you have to self-report to some kind oversight committee.

She was image obsessed in a way I was still figuring out as a child—I was learning what designer labels and handbags were, although Mrs. March leaned more towards the everyday Talbot’s and Anne Taylor. We never once saw her without a full face of makeup, hair done, and a manicure. I’ll always remember her advice, “girls, it’s better to get a light colored manicure, because when it chips, it won’t be as drastic and easy to see.” And damn, if that isn’t really good advice.

While Mr. March was a tall man, probably 6 feet, Mrs. March was the same height as me at 11 years old, standing 5 feet tall. One night at their house, she gathered us around the kitchen island and regaled us with stories about how she was at her heaviest her freshman year of college—a horrifying 110 lbs! I felt twisted and confused inside, because I was currently 85 lbs and working fastidiously to reach 80 lbs, where I wanted to stay forever. Maybe if I just did everything like the Marches, I could stay at 80. Maybe if I asked Mom to buy me those frozen yogurt bars Mrs. March gave us sometimes, the Lean Cuisines they ate for lunch when she didn’t cook, and if I stopped drinking soda at birthday parties, if I gave up the very few remaining foods I was eating at the time, then maybe I could do it.

And maybe, I’d keep getting the positive attention.

Rachel and I had known each other a few years, and Mrs. March, being a Frequent Flyer at our school, had known me nearly as long. She never paid me much mind, until I showed up for the first day of 5th Grade almost 20% smaller than how I had left 4th.

We weren’t calling what I was going through anorexia, we weren’t calling it an eating disorder, we didn’t know what to call it, but I had stopped eating nearly all meals after developing my stomach problems. It was the beginning of IBS, of POTS, it was the beginning of a life long relationship of hating my body and disordered eating.

And instead of expressing concern, adults kept praising me.

Parents seek out the kids that they want to befriend their children. I had always been The Good Kid (it was a consequence of being Mormon), and I had always been The Smart Kid (it came with the sarcasm). But now that I was The Skinny Kid, moms seeking to drop those pesky 20 lbs were fascinated by me like I was a tabloid piece. The bus stop moms and and my friends’ moms lauded me for the weight loss, but they never asked why, or more importantly, how.

It was those types of parents, the Mrs. March type parents, who packed strict and regimented school lunches for their kids, who lobbied for before school intramural sports, whose grooming rituals for their children scared the hell out of me, and who gave late night diet advice at sleepovers–these parents were becoming a staple in my life. Their “you look amazing!” compliments became more important to me than food, their “I wish I had your will power!” praises were now the air I breathed.

I was a people pleaser and perfectionist from the moment I was born, and I had finally unlocked the key to success, all it took was depriving myself of food.

But I couldn’t keep it up forever. We moved to Maryland, and I finally began to eat again (to the relief of my family), but my depression got worse and worse. We learned quickly that my form of depression was treatment resistant and I had to change meds frequently, seeking the right combination to calm the chaos in my brain.

One afternoon, while I talked to Rachel over instant messenger, I longed to still feel like I was a part of it all again. I missed my Virginia friends and my Virginia friends’ parents attention so much, and asked what they talked about when I wasn’t there.

“uve gained weight” she wrote. I remember the bright red lettering, the sans-serif font. Rachel’s favorite color was red. Everything turned red.

How do you respond to that? How do you respond to that when you’re 12 years old, and your best friend tells you that your friends talk about how fat you are, when you’re recovering from an eating disorder? I reminded her that earlier that year I was almost hospitalized for my depression, and my psychiatrist was changing my anti-depressants almost monthly.

“Those things mess with your weight,” I told her. 

She responded by quoting Legally Blonde.

“Exercise gives you endorphins. Endorphins make you happy.”

There is no possible way to respond to something like that.

Because even though it was Rachel writing it to me, I knew it was Mrs. March saying it.

And it took me years to learn this lesson, but right then, I finally realized—

As long as my eating was disordered,
As long as my body was disregulated,
And my mind depressed—

I would never be safe with adults.

I have missed you so much since we last came together to celebrate Christmas and Capitalism and chat about the products that I think are (1) the best and (2) would probably end up making pretty good gifts.

As I mentioned last year, I’m slightly pivoting my dysautonomia gift guide approach to now be Shannon’s Favorite Things, ala another famous lady from Chicago who will remain nameless for legal purposes (can’t have any lawsuits around here). Here you’ll find products that were great joys in my life this year, even if they were a little dull or a little utilitarian. Not all of these items will make traditionally good gifts, but I promise you, all of these products or services are GREAT, and might just be what you need in your life!

I know this year’s guide is late this year and I apologize, but I wanted to make sure I was pulling together all of the best items. Also I suffer from ADHD. I apologize.

If, after you perused this phenomenal list you still can’t find something for your loved one (or yourself!), leave a comment or hit me up on my socials, and I’ll personally help you because that’s what the holiday season is all about.

Merry happy and happy giving, friends. I’m so glad you’re here.

My Favorite Things

The Quencher H2.0 Flowstate Tumbler (40 oz) by Stanley

My favorite things/gift guides aren’t gift guides without a brand new water bottle, OK?

I think the Stanley mugs went viral because of Mommy Bloggers and Influencers in Utah, so when I finally indulged in getting this water bottle and professed my love for it, one of my friends said “now THIS is the most Mormon thing about you.” (Never mind the fact that I spent my childhood in the church.)

But guys, they’re onto something.

It fits in cup holders. It’s 40 OUNCES OF WATER! (Suck it, Hydroflasks!!!) It has a handle!! It comes in cool colors!!!

Stanley, you’re doing great, and even though I already have two of you, I want 10 more.

• Stanley, $40

• Dick’s Sporting Goods, $40

• REI, $40

Vitassium DrinkMix Pink Lemonade

I think I have tried all of the different electrolyte supplements out there. I get really excited with every new one I try, thinking it’s going to change my life and my symptoms and make me a new person, and then I taste it and I’m like— oh, hell no.

I got some free samples of some Vitassium products and over a flare weekend (although at this point, what weekends aren’t flare weekends) tried out the Pink Lemonade and that’s it. I’m sold.

Every electrolyte supplement I’ve tried up until this point has had a really artificial taste and/or has left a really bad aftertaste in my mouth. What I like about the Pink Lemonade Vitassium is that it’s not overly sweet (encouraging me to drink more, more, more) and there’s zero aftertaste.

This is my new rescue drink, and I absolutely love it.

• Vitassium, starting at $20 for 12 count serving box

iPad

Last year I bought myself an iPad (9th generation) for Christmas and it is my absolute love. It hasn’t replaced my computer, because I will never detach myself from the traditional computer, but I use my iPad for:

• reading e-books

• watching videos while traveling

• pretending to be an artist, scribbling and making weird “art” with my Apple Pencil in different design programs

• streaming shows in my kitchen with the recipe directly next to it—and also looking up necessary cooking info (are you SURE I should be cooking a chicken that long???)

• playing games (puzzles, color by number, logic games)

• taking extensive and very important notes during the book club I’m in (I am the very dedicated secretary)

I fully believe that the second you are diagnosed with a chronic illness you should be handed the tablet of your choice.

• Apple, starting at $329

• Target, starting at $279

• Best Buy, starting at $329

JVN Hair Care Products

I feel it’s important to regularly profess and proclaim my love for Jonathan Van Ness. I will follow him and his perfectly coiffed hair to the ends of the earth, and then maybe farther, because he is a perfect angel who makes me feel like I can achieve anything.

I am very much a lazy girl who desires to have beautiful hair, so I was ecstatic when he introduced his air dry cream. Erin got it for me as a gift, and I’m still using the same tube I got last May.

• smells good

• good packaging

• if I invest just a bit of time, my hair ends up looking great

Bonus, they have a hair quiz online that helps you figure out exactly the right products for your hair, so you don’t have to pay some guessing game, invest a ton of money, and then live in a land of regret. No, JVN has your back.

• JVN Hair, shampoos starting at $21

Custom Pet Portrait Ring

Almost two years ago, I saw an amazing promotion on Etsy for custom pet portrait rings. I jumped on the opportunity to get rings made of all of my dogs—my childhood dogs Rudy and Peaches, and my dogs at the time, Duke and Casey.

• CaitlynMinimalist, Custom Pet Rings starting at $21 (on sale now!)

Casaluna Heavyweight Linen Blend Duvet Cover & Pillow Sham Set

Previously in my life, I only ever picked out duvet covers based on what they looked like. Because who cares how the duvet feels, right? You have sheets that protect you from it.

• Target, $109

Casaluna Ultra Loft Down Alternative Mattress Topper

While we’re on the topic of beds, let’s talk mattress toppers.

• Target, $79

Anyday Cookware

I do not like cooking because:

• I have to stand while doing it

• It’s always so hot in that damn kitchen (can’t stand the heat, gotta get out!)

• I always spend like 3x longer cooking than I do eating

• It’s unfair

• I do not trust myself to not poison myself

ANYWAYS

• Anyday Coookware, dishes starting at $30

YouCopia UpSpace 9-Bottle Water Bottle and Travel Mug Cabinet Organizer

You know what you need for all of those water bottles I’ve been telling you to get?

• Amazon, $25

Clear Multi-Use Bins

I was strongly and firmly against all ASMR until I discovered

• Amazon, $30

Room Essentials Dinnerware 

One of the greatest joys in my life is my collection of super adorable melamine dinnerware from Target that is so cute you wouldn’t even believe it—but it’s melamine. You can’t microwave it. I also feel very protective of it (not that it’s fragile) just because it’s so adorable.

• 20 Piece Plastic Dinnerware Set, $20, Target

• Dinnerware collection, Target

Polaroid Printer

I aspire to be one of those girls who creates amazing journals filled with photos and knick knacks from travel whether it’s boarding passes or movie ticket stubs or menus or whatever. I was looking for an easy way to get photos printed and really liked the idea of having an at-home photo printer so I got this Polaroid one. The photos that you print have adhesive backs so you can put them directly into journals, scrapbooks, or onto people’s shirts, whatever it is you’re after (don’t worry about it). It’s fun, easy, and now I don’t have to wait like 2 weeks to get photos printed and mailed to me from online services. It’s the perfect gift for teenagers, and people who aspire to be like teenagers.

• Amazon, $124

Metal Wire Basket with Fabric

I’m an adult with ADHD, so I have to create some hacks for myself to keep a clean and aesthetically pleasing home.

• Target, $12

Large Convertible Travel Backpack

When I moved away from my friends and family, I don’t think I considered how annoying it would be to have to travel back and forth to see my friends and family.

• Target, $60

Every Word You Cannot Say by Iain Thomas

In high school, I religiously read two blogs,

• Amazon, $10

• Barnes & Noble, $15

• IndieBound, $15

Daring To Take Up Space by Daniell Koepke

This book was a gift from Erin last Christmas, and it was very intentionally the first book I read in 2022.

• Thought Catalog, $16

• Amazon, $16

And the best part… BUY THINGS MY FRIENDS MAKE!!!

It’s hard to decide who to feature and how to feature them, so this is in alphabetical order…

Astrid makes encouraging calendars, cute coasters, and colorful notebooks.

Diana just released her first novel, Last Chance Chicago, and I am elated for her.

Jackie creates geometric art entitled with questions that will rock your world. She has original pieces, prints, stickers, window catchers, and free resources for artists.

Natasha just published a beautiful children’s book about chronic illness with the sweetest illustrations.

Olivia hand embroiders names onto the cutest sweaters for newborns and toddlers.

My basically-sister Sara just launched a new business making magazine covers featuring your pet!

And there you have it!

My favorite things from 2022!

Have a wonderful gift giving season, particularly if you plan on giving gifts to me. (Kidding.)

Be safe, wear masks, wash your hands, and remember to get a present for yourself while you’re doing your holiday shopping.

Merry happy!

xo
shan

In my millions of drafts of this, I managed to identify the root cause of pain surrounding a friendship that ended years and years ago but is not one I stop thinking about. It’s a big emotional breakthrough, and I should sit still and absorb the moment and be proud of myself for finally making this connection, understanding the deeper meaning behind the pain I’ve shouldered for 12+ years, and instead—

I keep thinking about the other week when I was home in Virginia, driving up Route 28 with the windows down and blasting “Something Soon” by Car Seat Headrest, a song that is eerily similar to how I felt in college and many years after and sometimes still now. I’m thinking of how it felt with the wind in my hair as I sobbed hysterically to the lyrics—

And I remember the millions of times I would crawl into my mom’s arms (literally and metaphorically) and cry until I could cry no more, until I was sweaty with tears and had blown my snot all over whatever she was wearing (good God my poor Mom)—

I think about all of the years I spent crying and having panic attacks and how it was really only five years ago that I started to be a living, functioning person in the world, and how more has happened in these years than I ever could have expected—

It has exhausted me and challenged me but I feel like I’m finally beginning to catch up to my peers.

Over the last year, a million and ten people have told me that my 30s will be my best decade yet but I also remember the millions and tens of people who told me how I’d “flourish” in college and we all know how that worked out—

It scares me, things being good scare me a lot—we call Dad the Upbeat Fatalist because my God the idea of anything going well just doesn’t sit right in our family—

But every time I’m in therapy, my therapist pushes me to ask, “what if it goes RIGHT?”, and I owe it to her but mostly to myself to ask that question this decade.

So now, the night before, as I’m counting down the minutes left before this birthday—which ultimately is just a matter of record keeping more than it is a monumental shift in accomplishment or being—I’m remembering the new mantra that has overtaken so many pages of my journal—

What a gift it is, to not be dead.

And now,

What a gift it is, to be thirty years old.

Better yet, happy gift giving season of 2021. We survived not just another year, but another year in a pandemic. It’s at long last my favorite season—the season where we demonstrate our love and value by purchasing things for each other. My love language has always been gifts.

Years ago, this started as a dysautonomia themed gift guide, but last year I pivoted to Shannon’s Favorite Things, because to be honest, I sort of covered all of the appropriate dysautonomia gifts. There’s only so many times I can tell you, give POTSies fancy salt, water bottles, comfy clothes, and cute pill containers.

My annual favorite things DO include items that are great for the chronically ill, as I am very chronically ill, but will also include random products that I have come to really love that anyone will enjoy, along with my favorite section—links to my friends’ online stores!

A couple of these items have been mentioned in previous gift guides, but these are links to specific items I purchased this year that I really, really loved.

I don’t make any money off of these recommendations (however I would like to, so if you’re a business reading this, hit me up, I’d love to be your spokesperson). I believe all of these would make great gifts, and if you give one of these and the recipient doesn’t love it—just message me and I’ll accept it instead.

Merry giving!

*

My Favorite Things

*

Microplush Blanket by Bare Home

I believe I’ve said it before that blankets are always the correct gift to give.

When I moved to Chicago, I was only able to bring two blankets with me because I could barely fit anything in my car. It was devastating, as I am rarely seen without a blanket. The first thing I did when I got to Chicago was pick out replacement blankets, and WOW, this one was perfect. 

I got the king sized blanket in green and it’s the perfect size to wrap myself in while watching TV on the couch or snuggle with in bed—I can use the extra blanket to prop myself up with. 

Warning: if you live with a toddler, they WILL try to steal this blanket.

• Bare Home, king size, $29.99

• Target, king size, $33.99

*

Goosebumps Adult Swaddles

If you’re looking for something less fleece-y, a little more lightweight, then the adult swaddles from Goosebumps are the way to go. 

For years I was very jealous of babies for many reasons, the primary of which being that they had these great super soft lightweight blankets but I couldn’t find one that was Shannon sized.

I tweeted out this complaint and a friend sent me a link to the Goosebumps website which makes adult swaddling blankets. It’s the perfect blanket for summer—you still get the protection and comfort of being wrapped up without the heat. Absolutely phenomenal. 

• Goosebumps Adult Swaddles, super swaddle, $58

*

On a whim this spring, I grabbed this tumbler at Target because I told myself I was going to start making my own knock off

• Target, in pink, grey, orange, $9

• Target, in green, white, black, $9

*

In other Target finds, I found my all time favorite room spray, which is from their Project 62 Aromatherapy Collection. 

• Target, Project 62 Citrus and White Oak Room Spray, $10

*

The biggest (literally) find of my year though was the Capri Blue Volcano candle. 

He is my son.

• Capri Blue, Volcano Blue Signature Jar, 19 oz, $30

If you’re looking to buy a 60 oz MegaCandle for yourself, check out Anthropologie here

Winters in Chicago are long and the days are very short, so I decided to upgrade my SAD Therapy lamp.

• Amazon, Verilux HappyLight Luxe, $69.99 (normally $99.95)

*

Like most millennial girls raised in the suburbs, I used to be hard core into Bath & Body Works. And yes, I do still have two Bath & Body Works lotions on my bedside table at any given moment.

• Amazon, Trader Joe’s Ultra Moisturizing Hand Cream, $10.30

*

Going along with skin care, it took me ages to find a great lip balm. I used to swear by

• Dr. Bronner’s, 1 pack, $3.49

• Target, 1 pack, $3.49

• Amazon, 1 pack, $2.99 (normally $4.99)

(Pro-tip: Dr. Bronner’s Pure Castile Liquid Soap is also amazing, and I’m also pretty sure that Dr. Bronner’s is 100% a cult, but wow the products smell great and just clean really, really well.)

Emily sent me a care package that had my new favorite stress item—bubble pop fidget toys. The one she got me was in the shape of a circle, but they come in almost every shape imaginable from ice cream to Pokemon to gigantic game boards.

• Target, Chuckle & Roar Pop It! Fidget and Sensory Game, $7.99 (the one Emily got me)

• Amazon, Bright Moon Five Piece Fidget Pop Pack with Dinosaur, Unicorn, Food shapes, $17.99

• Amazon, COOPEA Pop Fidget Game Board, $14.99

*

I’ve written about bathrobes before, but I got a new one this year which is my absolute favorite I’ve ever had. 

• Amazon, TowelSelections Women’s Robe Turkish Cotton Terry Kimono Spa Bathrobe, $41.95

*

This March, I switched from working on the phone team at work to being a member of the chat team, which means that I am typing frantically all. day. long.

• Amazon, UBOTIE Colorful Bluetooth 100Keys Keyboards, $39.99

*

When I was in high school, I became one of those elitists who swears by Moleskine journals. I do keep dozens of other notebooks to jot down quick notes in, but for the journals I intend on keeping for years and years to come—I always go with Moleskine.

• Moleskine, Classic Planner 2021/2022, Daily 18-Month, $19.56 (normally $27.95)

*

IKEA has been my favorite place for this—a few years ago they sold twinkle lights in a glass bottle, then twinkle lights in a plastic glass dome. Now you can get a

Almost every store that sells Christmas decorations will also sell very inexpensive, lightweight string lights you can use to bunch up in anything from a mason jar to an old lantern. It’s perfect mood lighting for any room you’re in and also makes a great gift. 

• IKEA, BEGÅVNING glass dome, $9.99

• IKEA, VISSVASS string lights, $4.99

• Target, Room Essentials LED Fairy Lights with Metallic Photo Clips, $10

*

The trait people compliment me most on is my skin, and now that I’m getting older, I feel like I actually need to take care of it. I got the PMD Clean in a CauseBox subscription last year, so it’s the only tool I use to help me clean my face.

• PMD Beauty, PMD Clean, $99

• Macys, PMD Clean, $69.30 (normally $99)

*

Pill organization is a super personal business for us with chronic illness. I have utilized a few different systems over the years, but before my move I knew I needed a new container that I could potentially lock since I’d now be living with a three-year-old.

• Amazon, Souarts First Aid Bag, $13.59

*

*

Products from my friends

Yes! This is the best thing you can buy of all. I have very talented friends who create amazing things and you should buy everything they sell.

Donations

If nothing from this list above seems right, you can always make a donation in the name of someone you love to the best non-profit in the world, Dysautonomia International. This winter there is a matching grant from an anonymous donor, so your gift will go twice as far.

And in case these ideas weren’t enough—

You can view my previous gift guides here:

• 2015

• 2016

• 2017

• 2020

However you celebrate the season, please be safe, take good care of yourself, be good to others, and have a great holiday season.

Greetings, from your favorite newly minted Chicago resident. So much is new.

My neighborhood is great, and surprisingly walkable once I remember to leave my building and walk. The last time I could actually walk places from my house I was at VCU. 

Still, I need to drive, and I broke my side view mirror and dented my car on the garage alley from hell. This garage was designed by a sadist who loves the sound of metal scraping on metal and I really hope my dad never has to see what I’ve done to this vehicle. 

I have, however, successfully parallel parked multiple times despite never actually learning the skill in Driver’s Ed. (I got u, Olivia Rodrigo.) My most successful attempt was in vain though, as I learned once I completed parking that the spot was only empty because it was in front of a fire hydrant.

Lyndsi is my new date to all of my outings. We saw Hasan Minhaj and went to Jukebox the Ghost doing Halloqueen, something I’ve wanted to see for years. At Halloqueen, I told her I wasn’t feeling well, she disappeared, and 3 minutes later we had amazing seats with a great view provided by my new favorite House of Blues employee.

I made up a song for Max. I don’t think you could even say it’s a song, it’s just a chant I do while hugging him. He loves it. Eats it up. It makes me think, “oh wow this kid loves me! I’m totally in control!” And yet he’s the one calling the shots, jumping on me deciding when I sing the song, how long I sing it… he’s the ringmaster. He’s a damn genius. I’m his clown.

I’m holding my own pretty well at Jeopardy against Andy. He’s hard to beat, but I clean up decently in the art categories. 

My room has zero natural light. And it turns out, I thrive on natural light. My bedroom looks out onto a very dark alley with a grey building. The good news is that none of my neighbors open their blinds. The bad news is, I have no one to creep on or recreate “You Belong With Me” with. There is hope though—the guy who lives a floor above me keeps his blinds open at night and has light shows with his Hue lights… so there’s promise.

The good thing about the alley is that is backs up to the L and I can hear the train all day. I feel so cozy as I have either lived directly next to an airport and/or a major freeway since I was 13. 

My food cravings in Chicago are highly specific. For lunch, I only want cheese and crackers. For dinner, I only want take out from midwest specific chain restaurants (Portillo’s, Culver’s, any of the Chicago deep dish chains), or steak fajitas. And cotton candy Go-Gurt. I’m 29 and I’m eating Go-Gurt on a regular basis.

I turned 29. This is the last year of my roaring 20s and the last year I’ll be able to call it my roaring 20s. It’s also the first year I even thought to use the reference, which is a tragedy in and of itself. I’m really enjoying reaching my prime though, I feel like I can truly embrace what it means to be a millennial woman and watch my fridge organizing Tik Toks without shame.

Tori came to visit! Tori is also the fastest walker in the damn world because she lives in Colorado where she functions at altitude compared to us plebs at sea level. It’s fine, I wasn’t following her like a baby duckling. It’s fine. But seriously, we had a great weekend with the basic Chicago tourist things, the river architecture cruise, the pizza. 

I finally got to visit one of the stores I’ve been following on Instagram for months when I was planning my new Chicago life and it was disappointing—one of those “don’t meet your heroes” moments. I didn’t even needlessly drop money there. Is this… growth?

No. It’s not growth. I have been needlessly dropping money everywhere else. My credit card companies haven’t even reached out to me in concern, and that’s proof that capitalism is everything that Squid Games told us it was.

Do not send me anything via USPS. Yesterday a prescription mailed on September 29 arrived. It took 3 weeks for Emily’s birthday card to arrive to me. I set up mail forwarding for my old address and nothing has come yet. I’ve given up on it. It’s fine. Lance DeJoy has done his dirty work. UPS, FedEx, and Amazon, however, are still working, so please! If you’re so inclined. 

I’m in a full on 90s kick (I wrote while wearing mom jeans and a flannel) and I’d like to say it’s because I’m living in the land I originally lived in during the 90s, but I think it’s just because Gen-Z decided it’s the 90s again. I’m very obsessed with Pavement after hearing their song that’s viral on TikTok and binging their discography after remembering that I used to cry to “Spit on a Stranger” in high school. Is it a crying song? No. Was it on my “crying music” playlist anyway junior year? Yes.

I got my booster shot, and it was miserable for a couple of days, but I’m fully back to normal. Go get yours. (By the way, having depression now qualifies as a complex health condition that qualifies you for a COVID booster. I hang out with a lot of depressed people so if you’re reading this, you likely qualify. Go get the damn booster.)

I miss my parents. And my brother. And my dogs. And my friends. I miss Wegman’s, and the Super Target in Leesburg, and hills—it’s SO flat here. Why is no one else talking about how flat it is here? I even found myself missing Tyson’s Corner the other day—I was walking out of a shopping mall and was filled with a Tyson’s Corner Superiority Complex even though I hate Tyson’s Corner. 

But there’s a lot on the horizon.

This outrageously flat horizon.

I had a very specific plan for myself back then.

1. Go to VCU, study advertising.

2. Stay for my master’s at the Brandcenter.

3. Move to New York, work in advertising and become a creative director.

And in following these plans, in doing The Good Things, The Right Things, I would finally be Happy. I would finally be Whole.

It did not go that way at all. It went the opposite of that way.

I crashed and burned and put my life on pause while I watched my friends and peers do and be All The Things I thought were in store for me.

I sat in doctors’ offices waiting rooms and took online classes and had daily panic attacks and prayed and cried and hoped and waited—there was so much waiting. There is still a lot of waiting. There will likely always be waiting. But my younger self longed for relief and understanding and doubted it would ever arrive. I felt empty and there were days I was convinced that if you sliced me open, you’d find out there was nothing left inside.

It all worked out eventually—with the remission from depression, the POTS diagnosis, the getting the job, the moving out, the this, the that—but to this day I still can’t shake that feeling of,

“I should be more.”

It hangs over my head every minute. I’m having trouble believing that millennials can’t afford to buy houses because every damn day a person I know buys a house and gets engaged and finishes grad school and has a baby and what have I done?

I should make more money, I should be skinnier, I should be in a serious relationship, I should be more successful in my career, I should be prettier, I should have better clothes, I should be financially independent—

I know the real answer to these shoulds is in the way my therapist looks at me—with this all-knowing, soft smile of compassion and a light in her eyes. She tilts her head to the side and down at me and gently says, “now, what do you think I’m going to say to you?” which lately means, “look at the data in front of you.” Look at how far you’ve come, look at what you do have, look at how loved you are, look at your successes. She said to me last week that she wants me to have a “fuller notion” of my life’s story, to give more credence to the goodness of my life’s story, because there is so much good. I can loosen the emphasis on the painful parts, it’s the perfect time to give myself that gift.

It’s something I have been a lot better at doing. But I need more practice.

Practice is the answer to the shoulds.

Practice telling myself, data suggests that you’re very well liked and have a lot going for you when the intrusive thoughts invade.

Practice telling myself, you made new plans and they turned out great.

Practice telling myself, you deserve the goodness of the world.

I’m moving to Chicago this fall. I absolutely cannot wait. I’m giving myself the gift of something new and something scary and something exciting and I can’t wait to be there.

And most of all, happy sales and free shipping!

About a month ago I had really big and grandiose plans for another installment of my dysautonomia inspired gift guide—I had plans to work on it over Thanksgiving and scour the internet for deals and recommendations and provide you with the greatest ideas ever for your loved ones.

Welp. Here we are.

I want to blame my lateness on the fact that I threw my back out on Thanksgiving and was stuck in bed sleeping for a full week after, but that doesn’t do much to explain why I’m still another week late.

This year I’m incorporating a lot of non-dysautonomia items, which is why this year is just Shannon’s Favorite Things. Life with COVID has introduced the need for a lot of new products in our lives and SURPRISE, I HAVE A LOT OF OPINIONS.

Happy shopping, and happy holidays, I hope you find a product or an idea you love!

Face masks

I think the greatest nuisance of COVID is wearing a face mask. We always have to be aware of where our masks are, keep spares in the car, clean them… Plus I’m too scared to wash my masks in my laundry machine because if I’m losing socks in there, who knows what will happen to my masks.

The good part is that shopping for masks is actually fun and it’s now the perfect gift because every one needs them and having an extra is always helpful.

• Mask For It

• Pet Party (for the pet lover! customize masks with pictures of their animals!)

• Look Human (I highly recommend the Dr. Fauci mask!)

Water bottles

I recommend a water bottle every year because it is always a correct gift to give, provided you’re giving a quality bottle.

It’s a very cliche option to choose, but the one I’m loving the most is the 32 oz Hydroflask with the straw lid.

Bonus: get someone a pack of vinyl stickers to decorate their bottle with.

• Hydroflask

Hair dryer brushes

I sometimes call myself a failure of a woman because I can’t use a standard blow dryer to save my life. I lack all coordination required to hold a hair dryer and brush my hair at the same time without smacking myself in the head every 3 seconds. In addition to that, POTS makes it impossible for me to lift my arms for any extended amount of time. As a result, I’ve strictly relied on air drying my hair for… my entire life?

I used my friend Katie’s hair dryer brush at DysConf one year and it’s a GAME CHANGER. It’s fast, it’s easy, it only requires one arm, and I LOVE IT.

• Revlon One-Step Hair Dryer & Styler (this is the one I have)

• Revlon One-Step Hair Dryer And Volumizer Hot Air Brush

Salt

If you have POTS, you’re probably not getting enough salt in your diet… and no matter how much chips and salsa I eat, I’m still a bit low on sodium.

My lovely cousin Catherine decided to remedy that by sending me the nicest birthday gift, which was a ton of amazing salts from a mine in Utah called Redmond Salts. I have REALLY been enjoying their seasoning salts in particular–their garlic salt in particular. There isn’t anything that garlic salt can’t make more delicious.

• Redmond Salt

Tile

I lose things a million times a day—keys, wallets, prescriptions… it’s no good for anyone. After a few too many upset moments looking for keys, I finally decided to get a Tile and I love it. You put a little key fob on your keys or phone or whatever device you lose most often and use an app on your phone to locate it. And you can even do the reverse—if you lose your phone, you can press the button on the key fob and it’ll make your phone beep.

It’s come in handy A LOT.

• Tile

Meal & Grocery Delivery

When I moved into an apartment, the best thing I ever did for myself was sign up for sign up for Instacart’s premium service which lets you get your groceries delivered with no delivery fee—just pay for the groceries and tip your shopper!

It’s been such a lifesaver during quarantine and also on days when I just DON’T have the energy. When I know I have a big haul of heavy things, it’s the biggest relief in the world that I can pay someone to do it for me.

I also recommend gifting someone a meal delivery service! The one I hear the most good things about is Freshly, which delivers pre-made meals and all you have to do is heat it up.

• Instacart (use my code for $10 off first delivery)

• Freshly

Joggers

My greatest discovery of this year is joggers. Before 2020, I was strictly a yoga pants girl (and still, yoga pants and bike shorts are the bomb), but I feel spectacular in joggers, just like the 90s kid I am, who lived in sweatpants and Gap sweatshirts.

• Vintage Joggers from Gap (my favorite!)

Hand sanitizer lotion

I get really dry hands in the winter which has only been made worst by washing them constantly. Thanks, COVID.

I was so happy when I saw that hand sanitizer lotion is a thing, and I LOVE Vaseline’s. With a lot of lotions and hand sanitizers, my skin burns and hurts from the cracked skin, but I don’t have that problem with this lotion at all. This is a perfect stocking stuffer.

• Vaseline Hand Sanitizer Lotion

Stuff from my friends

I have the most incredible and talented friends that you need to check out.

Natasha makes candles that look and smell delicious enough to eat

Sarah hand blows custom glass ornaments and home decor

Kylie 3D prints 2020 themed cookie cutters

Elaine makes stunning mosaics

My mom’s friend Karma makes the most delicious chocolates and caramels

HOW COOL ARE THEY? Please, go buy from them, and tell them I sent you!

Artists that I like who I wish were my friends

Alyissa makes the cutest earrings

Clare Kim makes amazing pop culture paintings

Claire England makes adorable pins (check out the salty pickle one, perfect for POTSies!)

Michelle, Spoonie Sisters, sells shirts, mugs, and stickers for chronically ill girls — it’s SO cute

Morgan Harper Nichols, who is bananas amazing, makes art and poetry 

If you’re looking for more ideas, check out my previous gift guides!

• 2015

• 2016

• 2017

Whatever you choose, please be safe when shopping in person, have a social distanced holiday (but still celebrate over zoom!), and have a wonderful holiday season.

All my love,

Shannon

That is, until my therapist Jedi mind tricks me into starting the routine again, I do it, I proclaim from the mountain tops that, YES I AM A NEW WOMAN, and the cycle repeats?

It’s been quite a few times now, right?

WELL GUYS WHAT, Y’ALL.

I AM A NEW WOMAN.

I HAVE STARTED EXERCISING AGAIN.

But this time is totally different—I swear.

Last year I moved out of my parents’ four-story townhouse into an apartment with my friend Amy. We live on the third floor, and it’s been a game changer. Sure, carrying groceries up sucks (hello, Instacart!) but having my laundry and my kitchen and my family room all on the same floor as me—all within feet of me!—makes me not only less exhausted but happier.

All of this backfired a little bit when COVID started. Now that I wasn’t walking around at work, I wasn’t even walking out and up and down the stairs to my car every day, I was barely moving at all. I was confined to my tiny little home.

A couple of months ago I saw an Amazon sale for a piece of exercise equipment called a Cubii. It was like a stationary bicycle—but just the pedals. I’d seen stuff like this before, but nothing this secure and efficient looking. AND this has an app!

I liked the look of it, it had good reviews, and after watching a dozen videos about it, I hit buy. It was pricey, but c’mon! It’s an investment in my health! Plus it was $100 off!

The Cubii arrived a few days later, and there it sat. In the box. In my apartment. For weeks.

I mean, I was sort of exercising by osmosis. Just having it in my vicinity, it was like I was burning calories, y’know?

(I have since been informed that (1) that is not how exercising works and (2) that’s not even how osmosis works. It’s been a while since high school biology, I’m doing my best.)

Anyways.

In October I dragged the piece of equipment out of the box, set it up, and told myself, just 10 minutes. You got this.

And it was really easy.

Suspiciously easy. I mean, it was only on the level 1 for resistance, but still, it was so easy.

See, I think the Cubii is designed to be a piece of equipment you work out on for hours absentmindedly—set it at a low resistance level and pedal while you do send emails and take meetings. It’s designed to fit under your desk, so it’s like the seated response to standing desks. (By the way, I now know that exercise isn’t Of The Devil, but standing desks most certainly are.)

Now I’m not using my machine that way—but I don’t think there’s a “wrong” way to use it.

Every day I do a 20 minute work out on the highest resistance of the machine. For 20 minutes, I either turn on my TV or get a book and pedalpedalpedal and at the end, I’m tired, not fatigued, but this is the first time since I was a kid that I haven’t had a violently angry reaction to exercise.

The exercise is light. I’m not panting or drenched in sweat like I have with most exercise as an adult.

But it legitimately feels like I’m rewiring my brain to not abhor body movements.

And because there isn’t a negative association, I’m doing it consistently. And I’m doing eagerly, without dread. I don’t feel normal until it’s done.

Sure, I’ve exercised consistently in the past. I have exercise logs saved in my notes app to prove it. But those logs are accompanied with little side notes like “cried while doing it” and memories of being absolutely miserable.

I’m not miserable with this machine. And I never thought it would be possible post-POTS to move my body without feeling miserable.

So I’m really excited about this. It’s been a hugely positive change for me–it’s a source of pride, to check off that exercise box every day. Even if it’s not high intensity or running marathons or anything like that, it’s so much more than what I’ve done in the past.

Progress is built through consistency.

Thanks, Cubii!

*

Note: this post isn’t sponsored, I just really like the product and like sharing things that I think will help my fellow POTSies.

It’s my eighth birthday.

It’s a Friday, and my best friend’s mom is picking me up and driving us to school together.

It’s cloudy but it’s a little chilly, it’s my favorite kind of weather, it’s the best weather to ride scooters in because the sun doesn’t get in your eyes and you have the cul-de-sac to yourself.

I arrive at school and friends have presents for me, like a cool new pencil and a book about pandas—the only thing I care about in the world is pandas.

Tomorrow my parents will take all of my friends and me to the National Zoo. I’ll longingly look at the Panda Exhibit that’s still being built—pandas will arrive in two months—I have to wait. There’s so much waiting when you’re a kid. Mom is making me a panda cake, and I’ll get presents and play with new toys and Mike will have to be nice to me because it’s my birthday.

In a few weeks, I’ll be baptized and confirmed a member of our church by my dad. I’ve been learning about baptismal covenants all year in Sunday School, and I’m excited. I know I’ll be joining the church my ancestors traveled the world to join and build.

I love my life and my I love my world and I never want it to change.

October 6, 2010.

It’s my 18th birthday.

My world looks nothing like it did when I turned eight.

It’s a Wednesday and at school I’m gifted with a plate of Rice Krispie treats, a bag of candy, and a balloon. The Rice Krispies are consumed immediately.

It’s cloudy again and just cold enough to warrant jeans and a sweater, so it’s the type of weather I thrive in.

Even though the school day is easy—and Molly and Kristen make me a gigantic paper crown in newspaper—I’m weighed down by the longing, the confusion, the waiting that has taken residence on my shoulders and in my chest since July.

My life plan was thrown out the window last summer, and I’m now disillusioned by the idea of higher education. I want out of high school, but I don’t want to go to college. I don’t know what to do, and no adult will tell me what the answer is. They keep insisting that it’s my life and my decision.

I expect to wake up on my 18th birthday with the wisdom and clarity of an adult, but nothing changes, besides the fact that I can now vote, buy property, and get married.

I’m confused, I want a nap, and I either want to fast forward or rewind, but I don’t want to be here in this moment of uncertainty.

October 5, 2020.

I turn 28 tomorrow.

The pandemic keeps me from celebrating my birthday the way I want to, but the weekend is full of my favorite foods, gifts, and socially distanced celebrations. Mike and Jose surprise me with a 40” television because they say my 20” was getting in the way of quality TV syncs. I am outrageously spoiled.

For years, I never thought I would ever know happiness, or even what it is to be content. I thought my life would be ruled by the waiting. And sure, there’s still lots of waiting—waiting for the end of the workday and the weekend and for holidays. But that deep, soul-wrenching waiting—the waiting for enlightenment and relief from pain and for freedom and for autonomy—the all-consuming yearning is gone.

There were a lot of things I thought would happen by the time I turned 28 that didn’t—but I’m not waiting for those things anymore.

I’m not sitting stagnant but rather enjoying what was given to me. I don’t have the degree, husband, baby, house, picket fence, body, elite job—any of that. I have chronic illness and depression and a lot of self doubt. But I have friends and parents and dogs and a beautiful apartment and a job that takes care of me and coworkers and doctors and a community and—

This was not what I planned. I know my eight- and 18-year-old selves would never have picked this.

But I like it.

Have you tried going vegan? (I don’t know if—)
Have you tried going gluten free? (I did-—)
Have you tried keto? (Well it might—)
Have you tried the Mediterranean diet? (Is that the one—)
Have you tried FODMAP? (Once or-—)
Have you tried intermittent fasting? (That doesn’t work for—)

Have you tried yoga? (Yeah once—)
Have you tried hot yoga? (That’s unhealthy for—)
Have you tried yoga at my friend’s studio? (Oh who—)

Have you tried acupuncture? (That’s not—)
Have you tried a chiropractor? (My insurance—)
Have you tried massage therapy? (I’m not—)

Have you tried Ayurvedic medicine? (What’s—)
Have you tried reflexology? (Is that—)
Have you tried reiki? (Yeah once—)

Have you tried positive thinking? (Of course—)
Have you tried going on a retreat? (That’s too ex—)
Have you tried art therapy? (I’d like—)

Have you tried getting getting more sleep? (I’d love to—)
Have you tried getting less sleep? (Well—)
Have you tried polyphasic sleep? (What is—)

Have you tried essential oils? (I’m not—)
Have you tried celery juice? (The guy who—)
Have you tried the drinks Stacy at church sells? (I don’t—)

Have you tried vitamins? (Yeah I—)
Have you tried B12 injections? (Um—)
Have you tried St John’s Wort? (That’s not sa—)

Have you tried turmeric? (Is that a—)
Have you tried raw honey? (Where do—)
Have you tried cayenne pepper? (In my—)

Have you tried biofeedback? (One time—)
Have you tried hypnosis? (I don’t—)
Have you tried music therapy? (Where—)

Have you tried red light therapy? (What’s—)
Have you tried blue light therapy? (Isn’t—)
Have you tried green light therapy? (Wait—)

Have you tried infrared sauna? (How does—)
Have you tried colloidal silver? (I heard that’s—)
Have you tried cold therapy? (I don’t—)

Have you tried a juice cleanse? (That’s—)
Have you tried bone broth? (I don’t—)
Have you tried coffee enemas? (NO—)

Have you tried seeing a psychic? (Um—)
Have you tried burning sage? (Well—)
Have you tried spending more time in nature? (Well—)

Have you tried prayer? (Of course—)
Have you tried fasting? (Yes—)
Have you tried reading the scriptures? (Ye—)
Have you tried going to the temple? (I’d—)
Have you tried praying more? (—)
Have you tried praying harder? (—)
Have you tried praying better? (—)

Have you tried going off of your medications? (That’s a bad—)
Have you tried seeing new doctors? (I like my—)
Have you tried listening to anyone else for once? (What?!)

I’ve tried.

I’m trying.

Isn’t that enough?

How are you?

Like, really. How are you?

I don’t really know how I am.

I was furloughed at work at the end of March—they’re hoping to bring us back in June—so I have… so much time on my hands.

I wrote a post for Dysautonomia International about ways to stay engaged while quarantined, and I suggested to people that they take Ivy League courses online or and learn new languages and do puzzles and start crafting…

I haven’t done any of these things.

I did laundry the other day. I also did some dishes. My roommate must want to wring my neck because I suck at dishes. She’s so on top of it, and I’m much more a believer in letting things soak for like 24 hours… even if they don’t need it.

I’ve been watching a lot of internet videos.

I remembered an old crush I had on a CollegeHumor writer, so my brain told me, “hey, you should watch… every CollegeHumor video, maybe, ever.”

Challenge accepted, part of my brain that encourages me to make questionable decisions. (You should definitely watch this one about working from home though, and maybe this one too…)

The same part of my brain has been telling me to watch lots of episodes of Survivor on Hulu. I wasn’t allowed to watch Survivor growing up. It wasn’t a moral or ethical thing my parents had strong feelings about—my mom just thought the show was stupid and banned it.

I miss my mom and dad.

Emily and Erin suggested that I move back in with my parents for a little while so that I could quarantine with them, because seeing them is important to me.

That’d be great—except the last two times I slept there since I moved out, I threw my back out on the guest bed. Once, over Christmas where I was in pain for a few days, and the other in February, where I ended up with sciatica, and I thoroughly thought I was going to die. I looked into having the lower half of my body or spine removed but apparently that’s “impossible” and would “kill me” and I would only need the sciatic nerve removed, but even that is not really feasible. Whatever, friend in med school, I feel like you’re just not cut throat enough for my lifestyle.

My POTS is doing horribly.

Turns out, having a job was great for POTS. It gave me the structure I needed. I was on a great sleep schedule. I drank lots of water. I would get up and walk around the office… especially when I wanted to annoy my coworkers or ask my boss, “am I screwing this up?” (a daily occurrence.)

And now?

I’m afraid of leaving my apartment. An ambulance was parked outside of my building on Friday night for a few hours, and all I could think was, “Yep. Someone in this building has the virus.” I tried to argue with myself that maybe they’re like me, and they have a chronic illness and just need fluids or something. Or maybe they had one of those surprise toilet babies because they didn’t know they were pregnant, or maybe they just cut their finger off cooking (because apparently everyone is making sourdough and focaccia and weird coffee lattes and is slicing their appendages off) and didn’t want to risk a trip to the ER—

I don’t know what the people in this complex do and I don’t know if they’re licking the handrails when they walk up and down the stairs (not that I touch handrails anymore) and what if I walk into a spider web that has droplets of coronavirus in it or something like that? Is that a thing? Are you now paranoid that it’s a thing? Is this the equivalent of shouting “fire!” in a crowded movie theater? Is this a Shane Dawson conspiracy theory video?

All of this… is so much.

And I vacillate. Some days I’m great, it’s like vacation, it’s like the much needed “me” time I’ve been longing for. And other nights, I’m up until 5 in the morning because I’m afraid to fall asleep, as though sleep will cause time to start spinning out of control.

Every night I pray to God that my parents and brother stay safe and healthy. I don’t care what happens to me, but please, Lord, keep Mom, Dad, and Mike safe because if I don’t have them, I’ll fade away into nothing at all.

I worry about my chronically ill friends.

We are so well trained in how to handle life in isolation, in missing out on milestones and things we looked forward to. In being denied life’s most basic events, like grocery shopping or going to work or getting dinner with friends.

But now we have to comfort the rest of the world and teach them how to do this. We have to listen to the complaints about how hard this is. And yes, it is hard. It’s so hard. There’s nothing about this that’s easy. But we’ve been trying to tell you about life in quarantine for a while.

I don’t know what the world will look like when this is over. And for some chronically ill friends, there is no “over.”

I don’t know what my personal normal will look like. I don’t know if I want to know yet.

So I’ll keep going with this strangeness.

And in the meantime,

Tell me, how are you?

This has been the most monumental decade for me. Some of it was wonderful. Some of it was horrifying.

Here is the recap of the biggest events, from start to finish, in more detail than you ever wanted, because I care, and because so many of you were a part of it, and deserve to have your part of it documented as well.

Or, because I’m an outrageous narcissist and insist on writing about myself.

Either/or.

* some names have been changed

TW/CW: this post references severe depression in depth, suicidal ideations, and very briefly addresses body image issues.

2010

Opening scene

I’m 17 years old and it’s New Year’s Eve. Tori is having a party and I’m very deliberately planning to arrive late because my crush (who is everything) is supposed to be there–and if I’m late, I’ll look less desperate than I so deeply am.

He never shows–but this is the best New Year’s Eve I have in high school. We spend the entire night fighting over what to watch and give up to watch Anderson Cooper and Kathy Griffin on CNN.

At midnight, we go into Tori’s front yard and throw firecrackers at each other’s feet and scream into the dark.

It’s February.

Mom and I are at yet another vet appointment for our beloved dog Peaches.

She’s been sick the last few months, we think with bladder infections, and she hasn’t been improving.

The vet who has fallen in love with Peaches over the years tell us it looks like Peach has lymphoma and they talk about options for her. Mom and I know we’re not putting our sweet girl through surgeries or chemotherapy. She’s 11 years old, she’s had a good life, but she’s never been the same since my first dog Rudy died in 2007.

We keep her comfortable. We set up a bed in the family room so one of us can sleep with her and she doesn’t have to use the stairs. Peaches thinks the bed is for her and we sleep on the couch while she switches between the mattress and her dog bed–she likes options.

I wake up for school one morning and she’s suffering from bloat and her eyes don’t look the same, she’s not really there anymore. I know that this will be the last time I see her. I give her hugs, I say goodbye, and go to school. I check my phone in Physics and Mom tells that Peaches is in a better place now.

I’m numb for a few minutes, tell a few friends my dog died, start laughing hysterically and can’t stop–I don’t know how to process my emotions. My newspaper adviser approaches me when I calm down and gives me Girl Scout Cookies and tells me he’s really sorry. The next day at school, friends give me food and presents and tell me they miss her, too.

That weekend, I take Amtrak up to Baltimore to visit my Maryland friends. Drew makes us nachos and Erin, Dolly, and Jackie distract me.

We go to Michael’s and make crafts, gorge ourselves on carbs at IHOP, get dessert even though we’re full, and I fall asleep watching Saturday Night Live on Erin’s couch.

They know exactly what I need.

It’s July.

I signed up for a Summer Arts Intensive at VCU, one of the schools I’m planning on applying to for college. It’s three weeks long, and I’ve never been away from both of my parents for more than a few days.

The first few days are bumpy and scary–my roommate is… eccentric, and my stomach flares up and there is so much walking, and I still don’t know what’s going on in my body and why I hurt all the time–

But it ends up being one of the best things I’ve ever done in my entire life.

I learn new skills in Adobe Creative Suite, I learn about the fundamentals of graphic design, I learn how to screenprint and use a letterpress, I meet new people, I learn how to be away from my parents and my home, I get an authentic dorm experience, and my class and I end up singing the entire time we’re there.

September.

We’re at Megan’s house after homecoming piled on couches and sleeping bags and floors.

Three of my friends start singing the lyrics to songs about drinking and partying, lifelessly, like a chant. I don’t know what’s going on, but there’s a serious disconnect between us. I know they won’t be friends with me after high school.

It’s the second weekend of October.

In the timespan of 96 hours–

I take the SAT, I go on a college tour of Syracuse with my parents and decide that not only do I not want to attend Syracuse, I don’t want to attend any university, I see a taping of The Colbert Report where I get to speak to Stephen Colbert and do a secret handshake with him, and my grandmother dies.

Senioritis has nothing on me.

November.

I go with several of the members of the newspaper staff to Kansas City, Missouri for a high school journalism convention with our adviser. We’re obnoxious and horrible as we travel, but we attend seminars and I actually learn a few things and we exchange newspapers with kids from across the country.

There’s an awards ceremony on the last day of the convention and they give out awards for the best news website. We don’t win. My adviser can see my heartbreak–I’m the Online Editor-in-Chief and the website is basically my child. He leans over and gives me a little star pin that lights up to go on my lanyard.

“What’s this?”
“You’re a star,” he says.

Whatever this man is paid is not enough.

December.

I’m still (forever) hung up over the boy I like. How do you stop having a crush? How do you make it stop?

In a last ditch effort, I write him a letter telling him how I feel, that I know he doesn’t feel the same, but I need him to know because I have felt like this for four years and until he knows, my feelings won’t go away.

He responds better than any high school boy in the history of high school boys. He calls me and talks to me and does his best to offer me closure–he says I’m a good friend and a great letter writer. I will only ever say good things about him.

New Year’s Eve.

My cousin Andy, my uncle Malcolm, and aunt Vicki arrive at our house. Andy will be living with us until August while he completes an internship at IBM.

I’m excited that Andy will live with us–he’s always been one of my favorite cousins–but I started getting anxiety attacks over winter break and I feel incapacitated when I think about going back to school and finishing my college applications. I don’t want to go to college, but I still have to apply.

I hide in my parents’ room crying for a few hours until I can compose myself to go downstairs.

We ring in the New Year with Martinelli’s and I go to bed early.

2011

January.

Something’s not right. I’m either paralyzed by panic, or completely numb, and I don’t know what’s worse. I don’t know how to make it stop. Sleep, therapy, Klonopin, nothing fixes it.

My psychiatrist changes my meds.

But going to school is impossible. Completing homework is even harder. Everything is harder. It’s a miracle from God that I get my college applications in on time.

I miss weeks, months of school.

My friends text and check in on me at first, and then the texts die out. When I do get messages, they’re angry and annoyed that I’m not there. What am I supposed to tell them?

February.

My vice principal and guidance counselor call Mom and me in for meetings. We’ve been having these on a regular basis since I started high school. Most of them consist of my guidance counselor trying to manipulate me into doing things her way. My guidance counselor believes she has better ideas about how to help me succeed than my parents, therapist of three years, and psychiatrist of seven years. She argues that if the therapy and psychiatry were working, I wouldn’t still need them. No offense, but my guidance counselor can go to hell.

My vice principal says that if I don’t go back to school immediately, I’m at risk to not graduate. He says he’ll send a truancy officer to my house, even though I have doctors’ notes for all of my absences.

We tell my psychiatrist about the threat. He laughs and says, “They’re sending the police to your house? That’s assault!”

I drop all of my electives except for newspaper so I can dedicate all of my extra time to catching up in my two core classes. I catch up on all of my work in one week. My government teacher shrugs when I ask what he’d like me to do for the rest of the semester. I spend all of my time in the newspaper workroom. All of my teachers think it’s best that way.

March.

Newspaper goes to New York City for another journalism convention.

My pill container opens and all of my meds fall out and get crushed in my backpack. I go through withdrawal and am in excruciating pain while my friends and I go to seminars on journalism and design on Columbia University’s campus and see Broadway shows at night.

I break down crying during an intermission because I’m in so much pain. My newspaper adviser, a literal saint, consoles me, asking if I want to leave.

No, I don’t want to miss anything. I have to stay.

Spring.

Gina gives Megan and me a ride home from school. I laugh and tell jokes. I think I’m being normal.

“When will the real Shannon be back?” Gina asks.

I don’t have an answer.

April 7.

I still haven’t decided where I’m going to college. My psychiatrist tells me just to pick one.

I flip a coin in the parking lot of a shopping mall in Columbia, Maryland next to his office. The quarter I flip tells me to go to VCU.

I send out a Tweet, I update my Facebook status, it’s official. When I get home, I start my New Student Handbook.

I’m a Ram.

April 10.

I never had an 18th birthday party, so I have a half birthday party.

Midway through the party, all but three of my friends leave to walk to someone else’s house a few miles away because he didn’t show up.

I’m not looking forward to college, but I’m looking forward to finding friends who won’t leave me.

May 5.

It’s the day of my AP Lit exam, my dad’s birthday, and the day we’re scheduled to pick up our newest additions to the family, Duke and Casey.

I finish taking my exam, my dad picks me up at school, and we immediately make the drive down to Roanoke to pick up our boys. It takes hours, but pretty soon my arms are full of 16 pounds of fluffy golden retrievers and my heart is too big for my chest.

I’ve been sad for so long, and now I have these two boys to love.

June 20.

It’s graduation day.

I smirk when I shake the hands of all of my school administrators and my guidance counselor. They doubted me. They didn’t believe in me. They tried to plant seeds of doubt in my head and turn me against the people who do believe in me, who do build me up, who do support me–my parents, my teachers, my doctors.

I did it.

And it’s done now.

End of August.

I move in and get settled at VCU. Because I require accommodations, they put me in disability student housing and I live in an apartment style suite with a room to myself. My roommate is nice, but we don’t click.

There’s an earthquake and hurricane my first week on campus. I try to ignore what feels like signs from God that this was the wrong decision. I wander around campus and try to get involved with my school. I’m hired as the webmaster for the college newspaper, The Commonwealth Times. My name is on the masthead.

I’m excited. I’m terrified. And I’ve never felt so alone.

September.

Mom asks Leah to drive all the way from Virginia Beach to take me to church. I like Leah, I’m glad she’s dating Nate, but I don’t want to go to church.

Leah takes me to Sacrament Meeting and the bishop lambastes all of the members for not being more active, for not doing more missionary member work, for not doing All The Things. Leah senses my discomfort, we skip the second two hours of church, and get pizza in Shockoe Bottom.

October.

I start going to group therapy provided by the school. I don’t know if it’s making things better or worse, because I cry for a half hour when I get back to my dorm after every session.

I miss my therapist. I miss my friends. I miss my parents. I miss my dogs.

My friends are having “real” college experience.

I go to class, I reheat meals my mom cooked and froze for me, I do my homework, and I’m in bed every night by 11 PM. I don’t go to parties… I don’t even know how to find a party to crash.

I make my parents pick me up almost every weekend because I can’t stand staying in my dorm by myself.

I have never been so ashamed of myself.

Fall.

I run into Ben and Sarah on campus. We start eating dinner together nearly every night. Sarah and I go to Trader Joe’s on weekends and we go to Ben’s dorm to watch Ghost Adventures on Saturday nights.

When I’m with them, I don’t feel like I’m suffocating. I don’t feel like I’m failing. I feel like everything is going to be OK, even if it isn’t.

2012

Winter.

I eat meals with my friends as often as possible. I go to group therapy. I text my mom and friends daily. I’m even accepted into a new student service learning program for my sophomore year.

But I’m having suicidal ideations. I’m not going to hurt myself, but the thoughts are always there. I’m getting migraines. I’m skipping classes because if I leave my bed, I might fade away into nothing, and no one will ever know I existed.

March.

On my first day of Spring Break, I see my psychiatrist. We talk about how I’ve been doing. He decides I need to medically withdraw from school for at least two weeks to start, possibly the rest of the semester. I do not take it well. I begin hyperventilating and crying for the rest of our session while he and my mom talk about logistics.

Two weeks later, wrapped up in my parents’ arms, I decide that I will medically withdraw for the remainder of the semester.

The scary thing about this month is that most of my memory is missing from it. I’m the girl who can remember exactly what she’s wearing on any given day, what she’s thinking, who or what she’s mad at.

I remember almost nothing from March.

April.

Mike and Jose are both home from college. They have been best friends since they were 12, and they now take me everywhere with them. We eat pizza on the weekends and fast food on Tuesdays. It’s unhealthy, but it gives me a routine.

I start seeing my therapist again. She is infinitely better than the group therapy I received at VCU. She reaffirms that I can mourn the lost opportunities, and be sad. But she tells me that my path is different from my peers’, it always has been, and while it’ll be challenging, it can still be great.

May.

My friends start coming home from college.

We make hazy decisions fueled by Coke Zero. I discover that I like lying on the floor and singing Lana Del Ray songs when I’m not all together.

I was never a normal teenager–I never rebelled in high school, I never broke rules. So I do break a couple of rules now with the safety of friends who look out for me and make sure I don’t do anything I’ll regret.

I’m having fun.

July 13.

It’s my first day at Apple.

We have classroom training, shadowing, and then we’re on our own on the sales floor.

Getting this job is my proudest accomplishment–someone in my training class tells me it’s harder to get a job at Apple than it is to get into Stanford. I don’t care if it’s true–it makes me feel more confident than I have felt in years.

The job is difficult. And scary.

And I love it.

August.

Tori and I are shopping for clothes for her to take back to JMU. I see my childhood friend Allie and her little sister shopping for shoes. I immediately turn around and hide behind a flip-flop display. Allie can’t know I’m here. I can’t talk to her. She can’t know I dropped out of school. She’ll tell the rest of them.

She and the others stopped talking to me when I moved back to Virginia. Although, maybe I was the one to stop talking to them. Maybe it was no one’s fault. Maybe we were 13, and I was suffering from the burden of a depression too heavy for any child to bear, not to mention the anxiety, and nothing could have saved our friendships.

Tori and I try on clothes and Allie and her sister are in the dressing room next to us. I force Tori to hide with me. I don’t think Allie remembers the sound of my voice. We’ve known each other since we were five, but that’s irrelevant now.

This is the last time I ever see her, or the rest of them.

2013

Winter.

I go to work. I get pizza with the guys on the weekends. I play with my dogs in the backyard. I go to concerts. I travel. I’m active. I do everything right.

And then the headaches come back. And the anxiety. And the fatigue. I cry before I go to work every day. I’m sad and scared and it’s unbearable.

April.

My psychiatrist thinks I have Bipolar II. He puts me on Lithium and it’s almost comical how quickly I start spinning out.

I start abusing Klonopin. In a moment of clarity, I tell my mom and therapist. I give my mom my remaining bottles and she gets rid of them. Everything is so, so, so hard. I want to be done.

April 15.

I don’t feel right at work. My panic is high and it won’t stop. I tell one of my managers I need to leave early. They’re very understanding.

I grab dinner for myself at Corner Bakery. I wait for my dad to pick me up to take me home.

I don’t realize that it’s my last day at Apple.

May.

I go to San Francisco. Mom bought me tickets months ago to piggy back off of Mike’s graduation gift.

Mike and I are a couple of blocks away from Fisherman’s Wharf–I want to see sea lions.

A man drunk staggers across the street to us and Mike stands a little bit closer to me.

“You’re a lucky man,” the drunk guy says to Mike.

“She’s my sister,” Mike says with authority, alerting drunk guy to back off.

“Still lucky,” drunk man says, and hobbles away.

This city is outrageous.

Mike and I have to catch Caltrain back to Uncle Don and Aunt Carole’s house. I hate other cities’ public transportation systems–the DC Metro is the only public rail system that makes sense.

I’m tapering off my Lithium. I drag Mike through the train station at rush hour and push us onto a train. My heart is racing, I can feel the pounding of my blood behind my eyes. My panic subsides when we’re on the train and headed back to San Jose.

“You did really good,” Mike says when I tell him my panic attack is over.

June.

I’m seeing my psychiatrist. Yet again. He is horrified at what Lithium did to me. I can see the regret on his face. He’s a proud man, he’s very sure of himself, that’s what makes him a good doctor. But he admits to the mistake.

He’s thinking today. Mom says she can see the wheels turning in his head when he thinks.

He starts talking about how much I hate exercise, and how it’s weird for someone my age. He talks about how I’ve always hated it, even as a kid. Why is that?

“I think you have POTS,” he says. Postural Orthostatic Tachycardia Syndrome.

When I was 16 he said the words “postural intolerance” but we didn’t know this was a real, named thing.

Now he’s naming a disorder, a syndrome. He’s quoting his mentor, Dr. Peter Rowe, who is a leading expert on this at Johns Hopkins.

It explains everything I’ve experienced since I was a kid. The shortness of breath, the tachycardia, the fatigue, the muscle pain, the brain fog, the heat intolerance, and the complete, utter hatred, of exercise.

He tells me to find a doctor who will be his ally and confirm his diagnosis.

A few weeks later, a cardiologist tells me I have POTS.

July.

I’m researching POTS and find out the first ever Dysautonomia International conference, will be held three miles down the road from my house.

It’s sold out, but I email the organizers begging them to let me in. They have a cancellation, and they have conference passes for my mom and me.

The conference is packed and overheated and I flare up and have to go home because I get too sick.

But I’m a part of this community now. I have a Dysautonomia International bag full of salt samples and a cooling rag.

I’m in this.

August 10.

Jukebox the Ghost and Jenny Owen Youngs are performing a concert together. On a boat. In New York City.

I recruit Diana to come with me–we take Megabus up to New York and watch Veep on my iPad. When we arrive, we walk to Times Square and get pizza next to the Scientology building. Someone hands us fliers offering us free e-meter readings. No thanks.

When we’re on the boat, we can’t see Jenny or Jukebox perform, but we can hear them, and we sing and dance all night–that is, when I’m not falling over because I don’t have sea legs, and POTS is also killing me. The boat floats around the New York Harbor, we float around the Statue of Liberty and under the Brooklyn Bridge. Everything is spectacular.

We hang out with Jenny and Kristin after the show and are yelled at by the show security to leave. I hug my friends goodbye and Diana and I walk back to the bus stop. I nearly vomit on the way–I’m so dehydrated and fatigued I think I might die.

It’s worth it.

August.

We move from Herndon to Leesburg.

I never really liked our house in Herndon, but I start sobbing while I pack, because this is the house we’ve lived in longest. This house was supposed to be temporary. We were supposed to live here one year, then move to Oakton. Instead we stayed seven. Oakton is only in the past now.

I’m scared that we’re leaving. This is the last house Rudy and Peaches lived in. Will their spirits know to follow us to Leesburg?

September.

I sign up to take art history and sociology online. I fall in love with art history. I hate sociology.

It turns out I’m good at both.

I remember what it’s like to be a student. I spend long hours in my room and in the dining room, reading my textbooks and taking extensive notes. I write papers and discussion board posts and make a Tumblr dedicated to works of art that I hate.

I remember that I’m good at school. I’m really, really good at school.

October 5.

It’s the day before I turn 21. I’m eating breakfast in the kitchen. The doorbell rings. My mom tells me to answer it. I open it, and my best friend Erin is standing in front of me. She drove all the way from Delaware to surprise me on my birthday. It’s the best surprise and the best gift anyone has ever given me.

I love her.

October.

I visit Erin at school and spend a long weekend with her for Halloween. Her friends are great–they include me in jokes and make me feel welcome.

We have a party at her house for Halloween and it’s my first real college party and I love it. We all leave the party together to walk to Papa John’s to get pizza late at night.

Erin and I do homework together and eat sandwiches and quesadillas from Wawa and watch The Mindy Project and if this is what being 21 is, I want to be 21 forever.

I take the train from Delaware up to New York City and see The Colbert Report with Mom and my high school friend Astrid. It’s a great weekend.

2014

February.

I have tickets to see a test taping of The Tonight Show with Jimmy Fallon. Dad and Mike can’t get work off, and Mom gets sick. So I go to see it alone.

I’ve been to New York probably a dozen times, but never alone. It’s cold, there’s snow on the ground, and POTS is kicking my ass. I know that I can do whatever I want–this is New York after all, but I stay at Rockefeller Center because I don’t want to run around the city and rush.

I almost pass out waiting in line for the taping, I almost leave several times, but I’m glad I stay because the taping is wonderful.

Afterwards I go to Junior’s and get a grilled cheese and a slice of cheesecake and am glad to be back in my bed that evening.

March.

I’m taking a graphic design class at NOVA. I’m supposed to mount and press my latest project. I’m using the industrial paper cutter and suddenly my finger feels something sharp. There’s blood everywhere.

I’m the first student in the school’s history to slice their finger open on the paper cutter. I’m not sure how I did it. My professor brings it up every class for the rest of the semester.

The constant attention alone makes me nearly drop out.

But I pass.

June.

I’m not at rock bottom, but I’m close.

My psychiatrist says he wants me to have electroconvulsive therapy, better known as electroshock therapy.

This is sick. This is disgusting. I want to report my doctor for medical malpractice–he’s the crazy one if he thinks going Sylvia Plath and One Flew Over the Cuckoo’s Nest is a good idea.

We call my therapist. She calms me down. She sends me articles about ECT–some favorable, some against. She and my mom make me promise “no Googling” because we all know what happens when I go down the internet search rabbit hole. My therapist provides me with more articles and I read them so many times I nearly memorize them.

June 6.

Two days after being told I need to restart my brain with electricity, I start an internship with Dysautonomia International.

It’s a standard internship: make copies, stuff folders, file papers, price out merch on different websites. I go to grocery stores with the other intern Jennie to ask for donations to the conference’s hospitality suite. It’s scary and vulnerable to go to dozens of stores, pitch our cause, and ask for free stuff, but it teaches me to lobby my organization. These skills come in handy later on.

July.

DysConf Year 2.

I spend the entire weekend on my feet. I’m handing out schedules and telling doctors where to go and keeping parents out of the Continuing Medical Education Physician Only sessions and copying papers, again, and again, and again, and selling merch, and setting up for dinners, and any time someone needs something, I raise my hand and say I’ll help.

Because I love it.

Lauren calls me “Kick Ass Intern” and while I feel exhausted and like I might collapse, I haven’t felt this fulfilled since I was in high school doing newspaper.

We have Lobby Day on The Hill and it’s the hottest day of the summer and I’m in the Virginia Group. Dr. Chemali, who isn’t even my doctor, runs around Congressional Office Buildings looking for a place for me to sit because I’m the only POTS patient in the group and everyone looks at me like I’m going to faint. We sit in a stairwell and the moms who are there to lobby on behalf of their children tend to me–caregivers without anyone to care for–and I know I’m in the right organization.

Shortly after DysConf is over, Lauren and Ellen invite me to join the Patient Advisory Board.

I say yes.

August.

After research, after discussions with my therapist and parents, after hours of journaling and thought and prayer and meditation, I decide I want to go forward with ECT.

I talk through the decision with my therapist–I tell her how optimistic ECT makes me, and I paint the future I believe it’ll give me. She starts crying tears of joy. I have never seen her cry before.

We start making arrangements. I begin my consultations with Fairfax Hospital and have to list every single medication I’ve ever taken. It’s easier to list the medications I haven’t taken.

I have an appointment with my cardiologist who manages my POTS. We tell him our plan.

He freaks out and says no, no, no, and no. He will not sign off on this. My autonomic nervous system is not stable enough for this treatment. He will not allow it. We have to find something else. He will work with my psychiatrist to try to figure something out, but it will not be ECT. Not now.

Back to square one, because yesterday was the last day to register for fall classes at NOVA.

Fall.

I keep busy.

I see The Daily Show with my mom and cousins. I make graphics for Dysautonomia International. I go to a BJ Novak book signing on my birthday. I go to a wedding with my brother and our friends. Erin comes to visit. I visit Tori at JMU and make very questionable decisions but enjoy the freedom of being 22. I see The Colbert Report for the final time. Erin visits again.

I’m passing time.

And every day I think about how badly I wish I could have ECT. I think about the promise it held.

My therapist keeps me focused on what’s next.

2015

Winter.

I take another Art History course and sign up for a class on Christianity–the general survey of Religions course was filled up, so I take what I already kind of know.

Every day is long. Every day is repetitive. Every weekend feels the same.

My friends are finishing college and completing internships and doing All The Things I want to be doing.

I’m empty most days.

May.

If I had never dropped out of college, I would be graduating this month.

Mom and I plan a trip to Chicago and Minneapolis to take my mind off of things.

We stay with the Flosis in Chicago and Uncle Malcolm and Aunt Vicki in Minnesota. We’re gone for two weeks, and when I’m away and distracted, I feel normal.

I try to stay off of social media but I’m still inundated with pictures of friends in caps and gowns and the jealousy overtakes my body and the pain is real and the pain is physical and all I can think is, it should be me.

June.

Jukebox the Ghost is opening for Ingrid Michaelson at Wolf Trap. Even though it’s June, it’s freezing cold, and Aashna and I are shivering all night. It’s perfect though, because Jukebox the Ghost is the only band I’ll dance for.

Things are getting better though. Since getting back from the trip, I’m happier and more optimistic. This all swells up when Ingrid starts singing “Afterlife.” A year ago, I heard this song for the first time and cried thinking “will I ever feel this way? Will I ever have hope?”

Now, I’m hearing this song live, and I do have hope.

July.

It’s my first DysConf as a member of the Patient Advisory Board. I don’t stay at the hotel this year, but I stay at the conference for as long as possible every day. After months of daily isolation, I finally feel like I’m a part of something and I have real purpose.

The conference is like summer camp. You meet strangers on Day One and by the end of camp/conference, they’re your family, and you can’t imagine how you’re going to go back home because they’re your everything now.

Elyse and Amanda and Jenny and Kyla and Katie and Katherine and Daniel are only some of the people I love and cling on to–

Throughout the conference they take care of me and when they notice my pupils getting huge they tell me to sit down and drink water and how do I go back to The Real World after existing in this bubble where everyone understands me so perfectly?

Katie, Katherine, and I eat lunch with Alex Agro who is a speaker at the conference and was a contestant on America’s Next Top Model. As far as we’re concerned, we’re high status now.

August.

I get tickets for Mom, Dad, Mike, and me to attend a test taping of The Late Show with Stephen Colbert. Mom manages to humiliate the entire family when she’s pulled on stage to chat with the warm up comic.

Being back in New York City is electrifying, even if it’s just to see the taping.

Fall.

It’s check up time again. My psychiatrist mentions transcranial magnetic stimulation (TMS).

He’s talked about it in the past, but that almost no insurances cover it and that it’s $15,000 out of pocket.

I do not have $15,000. My parents do not have $15,000. We are not a family that just has $15,000.

TMS is the leading alternative to ECT. MRI strength magnets stimulate parts of your brain that have been inactive and then the depression… goes away.

He tells my parents they need to see if our insurance covers it. And then everything starts happening.

My psychiatrist writes a letter to my insurance company saying I need it. We look for doctors in the area who provide it. I do research. There’s one doctor I can’t find ratings of, but my therapist says “how about him?” for no particular reason. The doctor without ratings is our literal answer to prayer.

We meet with him and the questions he asks make me break down crying and as I apologize for each tear I cry and then he validates all of my pain–

He’s a military doctor. He sees the worst of the worst on a daily basis. And he’s telling me that everything I have experienced, for all of these years–

Is real, is valid, is complex. Is difficult. Is going to be a challenge to treat. But we can do it, and TMS is the answer.

Insurance approves it. And I’m scheduled to begin treatment right after the new year.

December.

Jose’s little sister Sara moves back to Virginia after living in Boston for years.

I’ve always wanted to be friends with her. We met a few times growing up, and I’ve known she would be a cool person to be around, a good person to be around.

And so naturally, Jose, Mike, Sara, and I become a group. Jose and Sara are the perfect complement to Mike and me. We name our Group Chat “Pizza Party” and that ends up being the name for our friend group. We’re Pizza Party.

It’s ridiculous, and I love it.

New Year’s Eve.

The Reid clan descends on Washington. Nate and Leah are finally getting married. I have a bunch of cousins in town but it’s never enough–I want more of my family around. However it also brings up the awkward, horrible questions.

“What’s new with you, Shan?” “How are you?” “Oh, you’re not in school?” “What’s next?”

I’m a master of dodging these questions. This time I lean in to them. I make them awkward.

“I’m depressed. Still living at home. We’re going to zap my brain with magnets. It’s called TMS.”

My relatives are intrigued, confused, and supportive.

2016

January.

I have my first session of transcranial magnetic stimulation.

Both Mom and Dad are there for the appointment. Mom brings Furry and Cutie, my baby blanket and my stuffed bunny from childhood.

They have to take measurements of my head to figure out where the magnet has to be placed to make the treatment most effective. It’s called taking my motor thresholds. The doctor moves the magnet, a clack! sound happens, and different parts of my body react. At some locations my fingers shake. At others, my arm flies up in the air. Mom is crying, but I feel calm for the first time in weeks.

I don’t know what’s happening to me, but this is going to work.

Winter.

Mom takes me to TMS five days a week for six weeks. I become friends with everyone in the office. I watch The Price is Right, Saturday Night Live reruns, and cooking shows during treatments. I also manage to fall asleep during treatments even though the magnetic pulses feel like a woodpecker tap tap tapping into my skull. I’m the favorite patient at the practice because I’m always on time, I make the technicians laugh, and I bring cookies.

My therapist comes to one of my TMS sessions. She’s fascinated by the process.

My doctors are what make me believe in God.

March.

I’m officially in recovery from depression. I have never been able to think this clearly. I feel light. I feel happy. I give myself daily goals and tasks to complete, and I complete them. I’m starting to think about the future, and the future doesn’t seem as scary. Except for one thing.

I have a 70% chance of relapse. But I have a 90% chance of TMS working again if I do relapse.

These stats ring and echo in my head like church bells.

April.

I relapse.

And because I never do anything half-assed, I relapsed hard.

Mom and I see a taping of The Late Show with Stephen Colbert in New York City and Gwen Stefani performs a song before the rest of the show and I’m so excited and I dance in my seat and it’s the first time I smile in days.

We stop in Ocean City on the way home and stay in a hotel on the beach. It’s freezing and snows while we’re there.

I have multiple panic attacks over everything from what I want for dinner to if I’d like to leave the hotel room or not. I’m not fit to answer questions, Mom, can’t you see that?

I sit on a beach alone for three, maybe four, hours and watch the waves and wonder if I’ll ever feel happy and whole. Is this what giving up feels like? I know I’ll go back to TMS. I know the stats. But this relapse feels different. This feels darker.

I learn later that my mom sat on the balcony in our hotel room, watching me, sobbing the entire time.

May 5.

It’s my dad’s birthday. My mom has a doctor’s appointment. I’m scheduled to see my therapist after.

I wait for my mom in the waiting room. She comes out and doesn’t look right. We walk downstairs and she sits down with me on couches in the lobby. She tells me she might have cancer. I’m not OK, but I stay calm. I nod. I’m going to be OK, because I’ll see my therapist in just an hour. We call my dad. We call my brother. I don’t feel good.

June.

The care brigade begins. Nate and Leah bring us flowers and dinner and give Duke and Casey baths in the backyard. Erin comes for a visit and gets me out of the house for a weekend and keeps my mind busy and occupied. We start receiving dinners from people at church. These acts of kindness are like safety rafts when we feel like we’re drowning.

June 23.

We take Mom in for surgery at Fairfax Hospital. We sit there all day, waiting. The anesthesiologist has a form of dysautonomia, and it makes us feel a little better knowing that he understands our bodies.

The surgeon tells us the surgery went great, but he never says the words “no cancer.”

I stay the night with Mom in the hospital because I can’t stand to be away from her.

We arrive home the next day and there are more dinners from church members and the Chaparros. We are loved.

A few weeks later, Dad and I take Mom to her post-op check up. The surgeon tells her that this is the best appointment he’s had in months–because everything came back benign.

The surgeon was 100% sure she had cancer. Everyone the surgeon consulted with was sure she had cancer. Mom’s second opinion at Johns Hopkins was sure. The original doctor Mom saw was sure.

But she is 100% cancer free.

We’re no longer drowning. We can breathe again.

It’s July.

It’s DysConf.

I’m with my friends again, and this time I meet Shira, who has known Katie, Katherine, and Daniel longer than me. I’m scared. What if they like her more than me?

No worries. She and I are instantly soulmates. I adore her.

Everyone asks about Mom. I tell them she narrowly missed death. It’s a miracle. “Thank God” is uttered a million times.

Katherine and I present together and Daniel holds my hand while I give blood for the research study I cry when Shira receives an award and Katie is running around, helping produce the “What Is POTS?” video with the videographer we become pals with over the weekend. We get Duck Donuts and stay up late laughing in our hotel rooms and everything is perfect because I’m with friends and I’m with my community.

Fall.

My stomach is acting up way more than usual. I have to leave therapy appointments midway through because I get sick every week. My gastroenterologist wants to go extreme. I want to wait it out. We wait.

December.

My high school friends are home for the holidays. I stay out almost all night with them and I love my time with them but when I get home, I feel like I’ve been punched in the gut. There’s something about the way they treat me, am I like their kid sister?, the way they ask me questions, do they expect more?, the way they look at me, do they dislike what they see?, that doesn’t feel right.

Is this all in my head?

2017

January.

Trump’s inauguration and the promises he makes scare me. I stay up until the early hours of the morning writing letters to representatives and senators about why his presidency will be a disaster, and why we need to protect the ACA, and why I’m scared.

Senator Tim Kaine’s office emails me and say they really appreciated my letter about the Affordable Care Act and they ask if the Senator can read it on the floor of the senate. Yes. Of course. Please, read it.

A week later they call and ask if I’m free to attend a press event downtown. Of course I am. They send me an e-mail with details, letting me know I’d be Senator Kaine’s guest to President Trump’s first Joint Session of Congress… all because I wrote a letter about the ACA.

Mom, Dad and I go downtown and meet with the Senator and talk about how hard it was growing up sick. We tell him about POTS. He listens. He understands. He puts on the dysautonomia awareness pin I give him. He’s great.

I attend the Joint Session and sit next to Heidi Cruz and Nancy Pelosi’s son-in-law. It’s out of this world.

April.

I go to visit my cousin Catherine and her wonderful family in Utah for two weeks so I can get some space, time to reset, time to relax.

I’m sick almost the entire time. I’m up most nights with agonizing stomach pain–I can’t remember if it’s ever been this bad. I try to decide if I need to go to the emergency room or not. I decide I would rather suffer in the comfort of a private bathroom and not deal with hospitals. I text my mom, I fall asleep on the floor of the bathroom, and I pray the pain will go away.

Catherine checks on me and brings me chicken noodle soup from a local chain called Kneaders. After vomiting all night, this soup tastes better than anything I’ve ever had in my life.

June.

Pizza Party goes to the beach for the weekend together. I have never gone on vacation without my parents. The moment we leave, I’m happy, and free, and excited.

Our Airbnb is next to a restaurant that serves the greatest crab dip of all time, has a swimming pool and hot tub, and we drive to different beaches with almost no waves but we bob around in the water with inner tubes decorated like pink donuts.

The weekend is perfect. It’s just too short.

July.

It’s DysConf time.

I present twice and run the Teens Programming and run around with my friends and dysautonomia family. On Sunday, Katherine, Katie and I lock ourselves in the office and put together close to 100+ schedules for Lobby Day.

A six foot tall dream of a woman enters the office and asks if we’ve eaten. We all ignore her and tell her we’ll eat eventually, we have more pressing work to do. She tells us that’s unacceptable for anyone, especially three people with dysautonomia. She asks if we have allergies. Thirty minutes later she returns with tacos, chips, and salsa for all of us from District Taco. We try to get out money to pay her, but she disappears. That’s how we meet Jenna.

Following in line with tradition, Lobby Day is the hottest day of the year (or at least feels like it). I’m group leader for the Virginia state group, and we attend all of our meetings together. I feel prepared and proud of myself, confident as I lead the meetings for our group.

I can do this.

September.

There’s a hurricane headed directly to where Andy and Lyndsi live in Florida. I’m terrified–what if the ocean sweeps them up and then an alligator eats Lyndsi and Andy gets struck by lightning while golfing in the eye of the hurricane?

We convince them to evacuate up here and stay with us for a few days. Lyndsi takes me to TMS, we go downtown, Lyndsi convinces us to go see IT, Andy and Lyndsi cook for us, and we play with the dogs.

October.

My depression is getting worse, and worse, and worse. I’m fighting it so hard.

I have my routine. Wake up. Go to TMS. Come home. Watch the three episodes of ER that air on cable every day. Work on the online auction I’m running for Dysautonomia International. Keep in touch with friends. Do whatever it takes to keep going.

There’s a Dysautonomia International event in Bethesda. I go and it’s the first time I can breathe in weeks. I’m with my people.

Erin comes to visit. We go to Frederick and visit our favorite store and walk around and things feel doable. We get sandwiches at a new grilled cheese place in Leesburg. We hang out with the guys and Sara.

It’s going to be OK. It’s going to be OK.

Christmas.

Jose and Sara’s parents are in Colombia for the holidays, so they spend them with us. We go to the Bohn’s on Christmas Eve and eat IHOP at our house on Christmas Day. Sara and Jose make hand-painted ornaments for every member of the family, including Duke and Casey. They’re the most precious decorations we own and only confirm the fact that I have the best friends.

2018

January.

Some sister missionaries from church stop by my house to say hello. I invite them in to talk. They ask how I’m doing, and if I’m interested in coming back to church. I end up agreeing to meet with them to talk about my struggles with church and my desire to reconcile them.

We start meeting weekly. I open up my heart to them. They listen. Patiently. We laugh together a lot. Sister Owen has to go home because her ankle is broken and needs surgery. Sister Bristow and Sister Calvert continue ministering to me. They’re lovely, and patient, and don’t expect a cookie cutter Mormon out of me. They tell me The Church needs me, my spirit, and my opinions.

No one from church has ever told me that before.

February.

I tell Mom that I want to visit Erin, and that I want to drive up there. This is my first solo road trip–driving used to terrify me. Now it excites me. Mom gives me the go ahead, as long as I take backroads.

Erin and I have set routines together–we watch trashy television and go to Wawa and Target. This visit I get to meet Erin’s new corgi, Wembley. We go to the King of Prussia shopping mall. POTS is overwhelming me and we take lots of breaks, and Erin is always patient with me.

We go to a bar and watch the Winter Olympics on the different television screens and eat appetizers and I’m so happy and so content, I can’t think of anything better.

March.

I see a job posting for a new Custom Ink store in Leesburg where I live. I’ve always been interested in Custom Ink ever since my friend Ashley started working there in Charlottesville. I apply immediately.

A week later I have a job.

June.

I travel to Nashville by myself for DysConf. This is the first time DysConf isn’t in the DC area and it feels completely different at first. But once my conference family starts showing up, like Elyse and Amanda, it’s back to normal.

Amanda is running the study this year–I’m her first or second patient in the study, and I’m declared the patient who complained the most. Good. Cognitive function tests are hard.

I go downtown a couple of times with Lauren and the Dysautonomia International crew to see sights and get dinner. I sit across from someone who orders hot chicken and that’s the closest I ever need to be to that dish.

Summer.

I start attending a church congregation comprised solely of young adults aged 18-30. My parents jokingly call it “the meat market” as most people go there looking to find someone to marry–my parents met each other at a young adults congregations.

I don’t find anyone to marry. But I find some friends who think I’m nice and laugh at my jokes and invite me to game nights.

August.

Pizza Party goes to Hampton again for one last hurrah before Sara moves to Seattle. I have been heartbroken every day since she took the job at Amazon, but I only want what’s best for her.

The weekend is a testament to perfect timing. The minute we get all of our things out of the car, it starts raining. After our first full day at the beach, I look up at the sky, tell everyone it’s time to leave, and when we get packed up in the car, it starts storming. It keeps happening. It’s weird.

Saying goodbye to Sara is horrible. I’m numb when I go home, but cry over the next few days. She’s on the other side of the country. This sucks.

October.

Awareness Month is big.

I run the online auction for Dysautonomia International again. I arrange for Leesburg to declare October Dysautonomia Awareness Month. Jenna and I help Lauren run the Dysautonomia International booth at the American Association of Neuromuscular & Electrodiagnostic Medicine conference at National Harbor. We light up National Harbor’s ferris wheel turquoise… except there’s a torrential downpour on the day we planned to do a group photo.

December.

Nate, Leah, and Will are back from China and are in Williamsburg for the holidays. I drive down and join Leah’s family for a visit to Busch Gardens’ Christmastown. On the way there, I make an impulse stop in Richmond. My heart is racing the entire time I take the familiar exit. I have three goals:

1. Walk through the compass (the central part of campus).

2. Look at my old dorm.

3. Buy a VCU shirt. I never owned or wore any VCU items as a student–I’m going to change that today.

The campus began undergoing renovations while I was a student. My dorm was torn down and has been replaced with a high rise. The library is completely different. The buildings are taller and newer and stronger–

And so am I.

2019

January.

I start my new position at work. I was promoted a week before Christmas. I have a longer commute but more responsibility, better pay, and benefits. Having health care changes everything.

Not only do I help people design custom shirts, I print them same day.

It’s a complex process, but I’m good at it.

March 21.

Mike, Jose, and I go to Seattle for Sara’s birthday. I make us matching shirts with Sara’s cat, Freddie Mercury, on them, and we’re wearing them when Sara picks us up at the airport. She laughs so hard and our group is whole again when we’re back in her car.

I fall in love with Seattle immediately. The view from Sara’s apartment is unreal. Her friends are great. 

We find the most amazing food at Pike Place Market, I fall in love with the beach Sara brings us to, we shop for new furniture for Sara’s apartment, and we watch the most outrageous documentary. I fall asleep watching television with my family every night–they understand me on a level most people don’t.

I want to stay forever.

March.

My friend Krista shares a makeover and photoshoot giveaway her friends Audrey and Tina are doing for women in need of pampering.

I’m afraid of admitting it, but I’ve always wanted a makeover. I’m afraid of admitting so many things, like the fact that I want to be beautiful, because I’m not That Girl. I’m the girl who doesn’t give a damn about looks. I’m the girl who’s above it all. I’m the girl who makes the snide, cynical comments because that’s safer and less vulnerable.

I nominate myself and they pick me. Audrey does my hair and makeup, Tina takes spectacular photos, and the end result is incredible but makes me uncomfortable because is that really me? She’s beautiful! I’m beautiful!

But at the same time, I’m still sad because the girl in those photos is fat, I’m still fat, and no matter how much makeup Audrey puts on me and no matter what poses Tina puts me in, I’m still fat–

And what does that say about me? Am I still worthy of love and time and space as a fat person?

I’m still learning to accept myself. It’ll be a while. But this experience has propelled me forward.

June.

Tori has a going away party. She’s moving to Colorado. It’s weird–she’s been the one I can rely on in this state since we were 16. I know this is good for her. I know this is what’s best for her. But I’m so terribly sad.

Summer.

I stay with Erin twice in Philadelphia. Once to see Jenny Owen Youngs, once for the Race to Beat POTS. Erin is slowly becoming a part of the dysautonomia community as I weave her into all of my events.

Emily invites us to a pool party the night before The Race to Beat POTS and it’s so fun and I love Emily so much–I don’t know exactly how or when she became one of my very best friends but I’m so glad she did because she is one of the best people I know.

July.

Amy, the first friend I made in my church congregation, posts that she’s looking for a new roommate. I know I want to move in with her instantly.

I spend the whole day crunching numbers and building budgets and it looks nearly impossible but I make it work and within a week I’ve agreed to move in with her the last week of September.

It’s amazing, because I’m fulfilling the promise I made to myself months earlier, that I’d move out of my parents’ house by the end of 2020. I’m a year ahead of schedule.

July.

It’s DysConf time. Mom and I arrive late. I’m helping teens sign in for POTS Pals when Natasha says “Congratulations, Shannon!”

I’m being honored with the Amelia Moore SPARKLE Award for Compassionate Advocacy.

Shira was the first person to receive this award in 2016 when we met. I knew I wanted the same recognition immediately–not for the attention or the pride, but because I wanted to be worthy of it.

And today, the community of people who have built me up over the last half decade believe I am. They believe I have put in the work, that I have advocated for this community, that I am worth being seen.

August.

I come back from DysConf. I’m exhausted.

I’m at work and my manager asks me to call her. She tells me my store is closing, but no worries, I still have a job, she’s moving me to headquarters to be on the inbound phone sales team.

I know she had to pull strings to make it happen–and I appreciate her so much. Within a week, my store is closed, everything is boxed up, and one chapter of my life is done. And I’m excited for my new position.

August.

My new team at work is hardcore.

It’s a brand new team. Almost everyone started in February of this year, and already we’re the top sales team in the company.

It’s intimidating. But they’re welcoming, they’re funny, they’re helpful, and this is going to be great.

September.

I move in on a Sunday. Mike, Jose, Sara, and Erin pay for a team of movers who relocate my boxes and bags full of belongings in just two hours. I spend the day unpacking and sorting and grocery shopping and getting extra things at Target–I treat myself to a fancy new toothbrush I’ve always wanted–happy birthday to me!–and I feel so grown up.

My mom and dad come to my apartment that evening with flowers and goodies for me. My mom brings me her teddy bear that she’s had forever–a teddy bear I have been trying to steal from her since I was a baby. She tells me that she wants me to borrow it until I’m settled in.

I’m determined to return the bear to her some day. But not before I’m ready.

December.

A story comes out about my church. Allegedly, The Church maintains an investment fund that is untouched, it only grows and gains interest, worth over $100 billion.

My heart shatters. My church taught me to be generous with my time and resources, to be transparent and honest in my dealings with fellow men, and not to hoard riches.

The Church and my friends who are members tell me all of the reasons why it’s OK, why it’s not a big deal, that The Church is just preparing for the future so they can always provide for those in need.

But I can’t justify it. I am unsettled, I’m uncomfortable, I’m not OK. This amount of money is unconscionable to me when people choose between food and bills on a daily basis, when medical coverage is not a universal right, when the earth is literally on fire.

It breaks my heart, because there is nothing I want more than to be a part of this Church. My ancestors built this Church. They sold everything they had to travel across oceans and plains to build up temples and churches for this faith. This Church belongs to me. It’s deep within my blood.

But I don’t think I believe in The Church, and I don’t think The Church believes in me.

Closing scene:

Sara is in town for the holidays, so Pizza Party will be together. We’re continuing our tradition of eating ribs and watching Year In Review videos–we’ll be watching the Best Fails of the Decade.

I have grown so. damn. much. over the last decade but in essence I’m still the same girl–

I’m loud, I’m scared, I’m vulnerable, and I wear my heart on my sleeve and then post my entire life on the internet–

I have succeeded and won and gained so much over the course of 10 years but not without failing so much and so fast and so hard. But what kept me on the upward climb was a team of people ensuring that every time I lost, I lost well.

I spent so many of these years in absolute agony and I either tried to shut everyone out or take people down with me. I once stormed up to my room demanding to be left alone, slammed the door, shattered a mirror, and cried louder. My brain was operating on the level of a three-year-old’s. I couldn’t process.

As a whole, this decade was garbage. The majority of the feelings I experienced in it, I never want to experience again, and I never want anyone to experience.

But the grace I was offered by the people who love me, and the doctors who care about me, and the animals that demand my love and attention–

has been pretty wonderful.

Now, on an unrelated note–

If you managed to read this entire thing, please contact me and I’ll buy you something off the Dollar Menu at McDonald’s because wow.

Early 2000s

I had frequent growing pains growing up—my arms, my legs, my back. My mom brought it up at every doctor’s appointment. She’s normal and healthy! they would tell my parents.

I did ballet, gymnastics, and Girls On The Run, a before-school running program twice a week. I could never keep up with my peers. The posture I kept during piano lessons felt like a workout in their own rite. We brought these concerns to doctors, citing family medical histories. Doctors reinforced, I was normal and healthy.

2006

I was in 8th grade. I was evaluated by a cardiologist who gave me a Holter, an EKG, and an echocardiogram. At that time, I had P.E. for an hour every day at school. I participated to the best of my ability, but I was exhausted every time. I told them that I felt less fatigued sitting down doing weight training than standing up doing cardio. The doctor told me that the source of my tachycardia was due to being overweight and that I needed to go on a diet. No further help or direction was given.

2009

It was the summer before my junior year of high school. As a favor to a friend, I was a ball girl with my friend’s soccer team at a D.C. United game. We ran out on the field, had to stand at designated posts, and pick up any stray balls for the duration of the game. After running out on the field, I had a sustained heart rate of 180 BPM+ for over an hour. I walked off the field and team doctors took my vitals, shoved Gatorade down my throat and called my parents to pick me up. My mom tried to take me to the hospital but instead I spent the night in the bathroom sick to my stomach. We went to urgent care where they ran an EKG. Next, they sent me to the hospital for another echocardiogram, and referred me to a new cardiologist for a follow up. The cardiologist said I needed to eat more salt, drink lots of fluids, and get in shape. 

2010

Later in my junior year of high school, the new cardiologist gave me a Holter monitor and a follow up visit. He didn’t see anything wrong with my heart or vitals, and told me to go jogging every day with a group of friends, because they would hold me accountable.

2011

I saw my pediatrician for my pre-college physical and vaccinations. She asked me how I was doing, and I told her about the tachycardia that never went away, how I felt tired when I stood up, and how I was always jittery. I told her how I’d always been like this, no matter what happened. I referenced the previous episodes. She looked at my list of prescriptions, and without asking how my mood was, told me my antidepressants weren’t working. Side note: my mood was the most stable it had been in years.

2013

After 10 years of my complaints that exercise hurt too much, and referrals from my PCP to check my antidepressants, my psychiatrist said, “I think there’s something else going on here.” He told me he thought I had POTS and to find a cardiologist who would agree. Once I told a cardiologist that a doctor thought I had POTS, they recognized it right away.

Hindsight

Diagnosis was the most validating experience of my life, and I am so grateful to have been given that gift when I was, even if it took 10 years to get there.

I know, it’s here again. Your least favorite time of year. GRADUATION SEASON.

You always think it’s going to be different… like, time heals all wounds, and it’ll get easier, right?

You had a plan.

Well the plan failed.

And many days, you tell yourself that you failed. But that part’s not true.

Your body failed you—the dysfunctioning systems in your body failed you. They are what kept you from your classes, from completing your classwork, from being able to read and comprehend what was in your textbooks and in the lectures.

That’s what brought you home.

So you stayed home, to learn about your body’s illnesses. To treat them. To try something else. To try something better. And in so many ways you flourished beyond everyone’s expectations.

And you tried to go back to school, you tried to stay on “the right path” — the path of your peers, the path that gets you the college degree, the $50,000 in student loans, the memories, the new friends, the this, and the that—

And instead,

Your body decided, “I need to stay.”

And so you stayed.

You stayed sick. You stayed broken hearted.

You watched your friends grow. You heard story after story about parties and exams and roommate drama and boyfriends and break ups and late nights at libraries and streaking the quad and drinking and dollar slices and clubs and honor societies and papers and study abroads and internships and—

And “what about you, Shannon? What’s new with you?”

You could feel your heart sink into your feet every time that question was asked… you wanted to retreat into the earth and report “nothing. Nothing that matters. I’ve done nothing.” Because in comparison? Who cares about your home life?

You were supposed to be in college, having experiences. Living life.

And instead, you were home, sick.

So every year when graduation season rolled around, the pain got worse. The shame was stronger. The burden heavier.

And the year you were supposed to graduate—The Class of 2015—you knew you wouldn’t be able to bear it—so you asked your mom to drive you 1,000 miles away from all of your friends so you wouldn’t be asked to attend any graduation ceremonies.

You couldn’t be happy for them this time. You couldn’t even pretend.

It took all of your grace to tell them you were proud and you loved them because every cell in your body was screaming “It. Should. Be. Me.” and “this hurts too much” and “when do we get our turn?”

*

It’s been eight years since you graduated high school. You tell yourself, you should have been able to graduate college twice by now.

But should you?

What good would it have done you?

During your “college years” you started to learn how to treat dysautonomia—the thing that’s been incapacitating you since you were a child.

During your “college years” we tested so many different ways to treat the depression—and we finally found the methods that work.

During your “college years” you did actually take a ton of classes through your local community college–those prereqs are basically gone.

During your “college years” you fell in love with Dysautonomia International and made them your support group, your sorority/fraternity, your everything.

During your “college years” you found lifelong friends who you never had to fight with over boys or roommate issues or class projects or anything, really. Unless you wanted to fight about which pizza to order or which show to watch first.

Your “college years” were anything but traditional, and they were hard as hell, but all in all? They were good.

And yet.

As soon as they bring out the graduation cap products at Target and grocery stores and shopping malls… it still hurts.

*

It will always hurt. It just will.

You might be one of the only members of your family without a college degree. And sure, you’re still young, there’s still plenty of time to get one…

But do you want one? After all the pain and bull crap?

The heartache you feel at graduation season would suggest, yes, you want one more than anything in the world.

But it also suggests that maybe it’s one of the unobtainables in life.

Sort of like being able to stand for extended periods of time unaided by medications or excessive amounts of water and sodium and electrolytes and ultimately sitting down.

It’s OK to not have a college degree. It’s OK to not know if you’ll ever get one.

Your parents said a few years ago they want you to finish your bachelor’s.

But you also know that your parents want you to forge and follow the path that leads to your own happiness.

“Now we have to figure out, what does that look like for you?” your therapist says All. The. Damn. Time. (Why doesn’t she just TELL YOU THE ANSWER? She obviously knows it by now.)

So… for now?

Hang. In. There.

You did not fail. Your body failed.

And look around (look around, how lucky we are to be alive right now) —

You have an amazing job, with benefits!

Amazing friends.

An amazing family.

Two beautiful golden retrievers.

You are doing so well.

So don’t worry, and enjoy this season.

Because you’ve got this.

When I turned 26, my dad signed me up for COBRA so I could stay on his insurance for 18 more months until I could either go full time at my current job or find another one with benefits.

My birthday was in October, and I still haven’t received my new insurance card or prescription card. It’s been fine, until last week when I went to go pick up some prescriptions on auto-refill. They tried to charge me over $1,000 for a prescription that normally costs me $1.61 for a 90 day supply. I had them hang on to it—I had enough of it at home—and immediately went to my dad, asking him what the hell was going on.

Since the incident at CVS, I’d been pushing the anxiety to the side, and Wednesday night it sort of violently erupted like Mount Vesuvius, showering my home and my family with ash and freezing all of us into place.

I couldn’t stop crying and hyperventilating. It was my biggest, scariest nightmare realized: did I have health insurance? What would happen if I got in a car accident on my way to my doctor in Baltimore the next day? What about the fact that I needed my Topamax refilled this weekend? Was I going to have to go without my primary anti-depressant?

I just couldn’t. I absolutely could not bear the thought of going through withdrawal yet again. Not now. Not again. Not after how hard I’ve worked to get to this point.

Mom tried to tell me she understood my pain, and I screamed at her and said she could never understand what I was feeling, and how dare she say that. (I told you I was freaking out.) Words were exchanged, I stormed out of the room, a door was slammed. (This behavior would have made sense 10 years ago when I was in high school, but I never really went through the screaming “you’re not the boss of me!” phase as a teenager, so I’m doing it now in short outbursts.)

Apologies were sent an hour later, lots of my, “I’m sorry, I’m just so scared, I have no control, I don’t know what to do,” and Mom’s “just hang in there.”

Yesterday, my dad made calls to the insurance company and told me they needed me to call in. I did so after I visited my psychiatrist (fitting that I should see him after a nuclear meltdown like this), they put me on hold for a half hour, then a nice woman named Victoria told me that it appears as though I don’t even have an account tied to my name for my insurance. She talked about creating a research investigation to create this account for my name, yadda yadda yadda, all I could hear in my head was “you don’t have health insurance.”

She never actually said those words, she never fully implied them even, but it’s like there was a Macy’s Thanksgiving Day Parade going around in my head, with big balloon floats all saying “YOU DON’T HAVE INSURANCE” and “YOU’RE SCREWED” and what did it matter what she was saying? At that moment, I was a chronically ill adult and didn’t have health insurance.

I was sitting in my car in a parking lot outside a 7-11, and I felt so vulnerable to the world. I thought about my pill containers at home, and the limited days supply left of Topamax they held.

And I read back through my group message with my parents, and felt myself crying, re-reading the message from my mom, that she and my dad had already planned to set aside $1,700 to pay out of pocket for my medication.

$1,700.

I had just screamed at my mom last night, yelled about how my parents were letting me down, and even still they were setting aside nearly $2,000 to pay for my medication out of pocket. And that’s money they don’t really have. (I mean, who just HAS $2,000 hanging around?)

I’m a brat.

*

Dad made another call to a different hotline, and they were able to call my pharmacy and get it worked out that I have prescription coverage. I should be receiving my insurance cards in a week or so. I have no idea what’s to come of the “research investigation” that opened with Victoria today. I don’t really care. My prescriptions are covered, and I’m OK now.

*

The last 24 hours of sheer terror has only further cemented my long held belief that every single person in this world is entitled to access to affordable health care at all times. I can’t find the words for how scary it is to not know if you will be able to afford the medication that allows you to exist and function in the world.

I’ve always sort of had this idea of and slow burning fear about losing my health care, and for this 24 hour period, where I really thought it was gone for good, I can tell you that it’s unacceptable that anyone should live this way for any amount of time, ever.

Because here’s the thing:

I was always going to be OK.

To begin with, I was put on COBRA, which is a huge luxury.

Next, my dad, while not a practicing lawyer, went to law school, and is well-versed in how to navigate the healthcare system. He knows how to handle these phone calls. He knows how to make sense of what they’re saying.

And my parents were willing to pay out of pocket for my prescriptions. My mom said they’d refinance the house if they needed to. My brother even said he’d help out. I also know beyond a shadow of a doubt I could turn to my extended family.

I am the definition of privilege. And even wrapped up in this privilege, I experienced the utter terror of what it’s like to live without health insurance, and it’s not something I’d wish on anyone.

No one should need a lawyer father and parents who will refinance their house and $2,000 on the side just in case there’s a hiccup in their insurance coverage.

We need equal, affordable, quality access to healthcare for all–whether that’s Medicare/Medicaid for all, or another quality solution–I don’t don’t know what’s best. I can’t pretend to. But no one should live like this.

*

P.S., a huge thank you to my parents for being my everything through this. Wowza.