Have you tried exercising? (Yes, but—)
Have you tried meditation? (Yeah, once or—)
Have you tried hydrotherapy? (I’m open to 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?!)
And all I’m left with is this:
Will my efforts ever be enough for those outside my illness?
When I was a little girl, I was afraid of everything, most notably thunderstorms. Every time storms would roll in, I would get a very familiar stomach ache that would turn me into a shaking mess. I would obsessively watch the sky, studying the formations of the clouds, watching out for lightning, counting the seconds between rumbles of thunder.
In my family’s big, safe, Virginia home, I would round together the things that made me feel safe—my blankets, my stuffed animals—and was ready to evacuate to the basement at any given time. I was born in the Chicago suburbs and spent ages 3 to 5 in Minnesota—I was in several near-tornados as a little girl—and I was always prepared for the worst. Even if I was indoors, even if I was in a basement without windows—I was vulnerable. My family was vulnerable. I had to protect us from danger.
I watched The Weather Channel all the time, learning everything there was to know about my enemy—but even armed with all of this knowledge—every time the sky turned the least bit gray, I had that same stomach ache. That anxiety. That fear.
This was the beginning of my life with chronic anxiety.
*
The terror surrounding thunderstorms didn’t fade away until I was in high school. But my fear of thunderstorms was replaced quickly by the anxieties of everyday life of a teenager, and now adult life.
What if I fail this exam?
What if I don’t get into college?
Do my friends hate me?
Am I smart enough for this?
Do my parents like Mike more than me?
Am I ever going to learn how to conquer this?
Am I always going to feel this way?
Am I ever going to get over this?
Is this my forever?
Those meshed together with my onslaught of depression, with my undiagnosed POTS, with being a teenager, with the reality of being a normal human being, and I collapsed. Regularly.
I kept wishing I would hit rock bottom, so that at least everything would be upwards from there, but every time I thought I hit my lowest—a few months later, I stumbled upon a new challenge.
It never kept me from rebuilding though.
That’s what we did in therapy: we sat in the pain, we mourned, we made a game plan, and we rebuilt. We always rebuilt. Even if we knew another crash would eventually come.
What if your meds stop working?
What if your therapist quits?
What if TMS doesn’t work?
What if you relapse?
Relapse is a word that thunders in my head and shakes me to the core, reducing me to the 8-year-old who ran quaking from summer storms.
Relapse could very well happen.
That’s the reality of anxiety, of depression, of any health matter.
But the light that follows is this:
In my teens and early 20s, I was so anxious I couldn’t even drive a car. Now, I’m sad because I miss driving.
For a while, I had so many anxiety attacks that I couldn’t hold down a job. Now, I have one with coworkers I adore.
When my friends graduated, I hated myself for not finishing college. Now, it’d be nice to have a degree, but I could dance every day because I’m not weighed down by student loans.
In 2017 I was so depressed that the only good part of my day was watching a three hour block of the TV show ER. Now, the best part of my day is actually talking to people.
A few years ago I sometimes needed to see my therapist twice a week. Now, I go 2-3 weeks without seeing her, and I feel great.
I could relapse tomorrow. It would be devastating. But every day I’m working on strengthening myself so that if relapse ever happens, I can find my way out again, and hopefully help someone out of their depths as well.
*
I think a lot about what the 8-year-old version of myself would think of who I am today.
Would she be proud? Would she be confused? Would she be angry, because 8-year-old Shannon expected Grown Up Shannon to have a career centered around pandas, and anything less than that is a disappointment?
I’d like to think that my younger self would breathe such a sigh of relief—because now, I like keeping my bedroom window open, especially when it rains, so I can listen to the thunder, watch the lightning, and I’m not scared of it.
And maybe, in a few years, the even older version of myself (oh God… aging) won’t have the same fears I have today.
Maybe relapse will be just like thunderstorms, and it will just be a concept that isn’t so scary anymore.
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.”
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.
Hi, team. Coronavirus/COVID-19 is here, and it’s happening.
And I’ll be real. I’m scared. I was in denial, even when scientists said “it’s going to spread, it’s going to spread” I, and I think everyone else in the country, thought “but we’ll be OK.”
As my therapist will always tell me in a scary situation–
In a scenario where we don’t have enough information, when we still don’t know the ending, we should operate under the assumption that the ending WILL be just fine, while still taking precautions. (A little bit of “hope for the best, prepare for the worst,” but tell yourself the ending will be OK, even when you’re panicking.)
I was born and raised in the Mormon faith tradition and their culture is ALL. ABOUT. PREPAREDNESS. Growing up, we had activities where we learned how to help our families prepare for disasters and emergencies (seems kind of strange for 7-year-olds in retrospect), but I’m glad I was a part of these, because those, along with my therapist’s advice, have helped me enter a kind of zen state of mind where I focus mostly on wanting others to wash their damn hands and stay at home.
This state of mind has also allowed me to engage in really uncomfortable conversations with people where I challenge their thinking about this pandemic. Some people want to take this opportunity where the world is bunkering down and isolating to take advantage of cheap flights to go on vacation. That doesn’t fly with me (no pun intended.) I’ve been calling people out and it’s really uncomfortable, but it’s necessary.
I invite you all to do the same, because this is how we keep people safe. Social isolation, staying in place, eliminating as much contact as possible, is how we eliminate the spread of disease. Wash your hands. Don’t shake hands. Sneeze and cough into your elbow or a tissue.
Below are resources I am collecting to help inform you all and help you feel empowered. I will update this regularly, and try to keep it full of relevant information for those of us with dysautonomia.
Going out and socializing right now is like drunk driving. You’re not just endangering yourself, you’re endangering everyone around you. Because if you pick up the virus, you’re giving it a free ride to silently multiply and spread to others, even if *you* don’t feel sick.
It's surreal watching people you care about continue to go out to bars and talk about being "free" to live their lives. Crises have a way of revealing people's commitment to protecting strangers around them — how much a person views themselves as part of a larger community.
Hey abled people, did you know these Corona provisions aren’t all about you? They are about keeping us chronically ill safe from you. When you don’t follow a recommendation because you feel you would be fine, you contribute to its spreading. That selfishness will kill us.
I saw my friend on Insta on a cruise & I was like “uh oh she’s disobeying the CDC & gonna get the ‘rona™️” & sure enough two days later she’s back on insta like “I’m being sent home bc I have the coronavirus”
EVERYONE !!! BE CAREFUL !!! DO WHAT THE CDC SAYS !!!
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.
Peaches enjoying the snow, one last time. February 2010.
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.
