Resources to stay informed about COVID-19

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.

Don’t panic, but do take every precaution.

And you can read a Facebook post of mine about the importance of self-isolation here.

websites

articles & think pieces

tweets & twitter threads

videos

podcasts

misc

ways to help/ways to receive help

last updated Mar 21, 2020 at 9:30 PM


Decade in review

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.

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The clues my doctors missed

I try to live my life without regrets, but I can’t help but look back wistfully on the moments where doctors missed my many signs of POTS. My diagnosis process worked out in a really beautiful way—I made incredible, lifelong friendships I would not have otherwise had I not been diagnosed when I was 20—but damn, sometimes it’s cathartic to feel the sorrow surrounding the times my doctors missed the signs.

Early 2000s

playground before school, 2002

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

my best friend Erin and me, 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

my friend Dolly and me, 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

hanging out in a friend’s basement, 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

before my high school graduation, 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

hydrating the best way I know how, 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.

What I hope, is that in sharing these stories, in working in the dysautonomia community—

that little kids with abnormally frequent and severe growing pains and teenagers with non-stop tachycardia and young adults who keep getting their problems written off as depression—

will be listened to.

And if the culprit is actually POTS?

That they will be treated.


An open letter to myself at graduation season

Hey, you.

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.


Don’t worry, I’m still around

Hey! It’s been a while.

Here’s a quick little update.

I’m doing the Cheesehead Challenge, a race benefitting Dysautonomia International held in Wisconsin (hence the cheese), virtually from home in Virginia.

I’d love it if you sponsored me! I have some cool incentives to sponsor, too. If you decide to donate, leave a comment so I can send you your thank you note!

I’ll be back soon with some very overly emotional and “AM I RIGHT GUYS” programming.