Decade in review
An outrageously comprehensive review of my life, from 2010-2019. I'm not kidding. Nothing's left out.
Today is the last day of the decade. Can you even handle it?
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:
Walk through the compass (the central part of campus).
Look at my old dorm.
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.