A month ago, I had one of those big nights you remember forever.
I’ve felt nervous writing my recap blog—I wanted to do it justice—but I realized I’ve worked myself into so much of a tizzy that I haven’t written anything at all now because I’m in a writing paralysis. (Isn’t it fun being perpetually stuck in your own head?)
So now’s the time to share—forgive me if it’s a bit long, but when you get your 15 minutes of fame, you document it thoroughly, even if it’s belatedly.
Last January, you could say I was a bit distraught about Trump’s inauguration. Thankfully, my uneasiness propelled me into action and I spent a lot of nights with insomnia writing letters to senators and representatives on committees about issues that mattered to me—the Affordable Care Act, disability rights (especially pertaining to education), the travel ban…
My friend and I protested the travel ban at Dulles International Airport on January 29
One of my state senators, Tim Kaine (and still America’s step-dad, thanks John Oliver), put out a form for Virginia residents to share their stories about the ACA and how it affected them. I wrote him a letter about how provisions of the ACA like mandates that patients with pre-existing conditions can’t be denied care and children can stay on their parents’ insurance until they’re 26 were life-changing for my family and me.
A few weeks later, his staff got in touch with me and asked permission for Senator Kaine to share my story. I fell over myself saying “yes! of course!” because that’s one of the many (many) reasons I’m open about my life. If anything I’ve been through can help someone else, if my story can be shared to help others for a bigger, positive purpose, then yes, share it.
(I also asked his office to send along a lot of my personal feelings about cabinet nominations to which they kindly obliged. I’ll say this until I’m blue in the face: Senator Kaine’s staff is the best.)
On February 9, during Tom Price’s hearing to become the Health & Human Services secretary, Senator Kaine read a selection of the 1,000+ letters sent to him about the ACA and mine was one of them.
I nearly fell off my bed when I watched the video, my hands were shaking watching my senator, a man who was nearly Vice President of the United States, read my words and have them entered into the senate record.
Throughout my life, so many things I have said have been brushed aside and ignored by countless people in various positions of authority—doctors, teachers, school administrators, church leaders, bosses, group leaders in peer projects… For me, validation of my feelings and experiences from individuals I value is particularly significant and in a very real sense, healing.
I don’t know how much more validated I could possibly be: I was being supported by a high ranking government leader, vowing to take my side and fight for the ACA because of my story and stories like it.
Phrases like “hell yeah!” came to mind. (As well as “suck on that!” to all of the people who have doubted me throughout my life.)
I was flying high for the rest of the month, assuming these were my 15 minutes of fame. Then, I got another phone call at the end of February inviting me to be Senator Kaine’s personal guest to the Joint Session of Congress, basically the State of the Union lite.
NO BIG DEAL EXCEPT THAT IT IS (and then my brain short circuited.)
So how do you prepare to attend a Joint Session of Congress?
For me, it involved:
You could say I was a bit nervous…
- getting my hair cut
- buying a new outfit because I own almost exclusively t-shirts, jeans, yoga pants and a denim jacket
- buying makeup to make myself look presentable
- spending hours writing, writing, writing because I had to come up with something smart to say
- FREAKING out because even though I’d done lobby days with Dysautonomia International, and one of my childhood friends’ father was a congressman, this was so different—
I got to bring my parents to the Senate Russell building on February 28. We arrived in the late afternoon and got to know several of Senator Kaine’s staffers who went over my schedule for the evening.
We talked about how his office works—my family and I got to grill them on what they do, the inner workings of Senator Kaine’s schedules, and everyone was so kind and patient with us. (This says a lot about what they go through on a daily basis—my dad’s questioning is very long, very inquisitive, very thorough.)
What nearly every person said is that constituents’ stories are what drive them to do their jobs. No one I spoke to has a personal agenda or even an axe to grind—they’re doing their jobs to make the country a better place.
I did an interview for a local TV station (I never got to see if they used it, but the reporter and cameraman were awesome), had some snacks (three cheers for free Virginia products—peanuts and Pepsi beverages) and kept trying to think of things to say that would make me sound smart.
Tim Kaine is my new best friend, even if he doesn’t know it
Senator Kaine met with my parents and me for a good half hour—he’s the real deal. He took so much time to ask my parents about how and where they grew up and met, about if they had any other kids (my brother couldn’t come because he had to work, we’ve given him endless grief about this)… and when it came to me, I felt heard.
I explained my journey through Fairfax County Public Schools—I told him how we struggled getting a Section 504. That surprised him, given what a successful school system it is, but we shared some other facts about it, and he really took the information in. I told him about POTS and dysautonomia and he picked up on the blood flow problems of POTS quickly—it was beyond heartening and made me think that he’s heard quite a few medical stories like this before. (I also got to give him a dysautonomia awareness pin which he graciously accepted!)
I’m sharing this not to necessarily convert you all to be Kainiacs (another Tim Kaine nickname we can attribute to John Oliver), but to remind you guys that good members of government exist despite Congress’ terrible approval ratings. Yes, some members are nothing short of disconcerting, but others are fueled by constituent stories and want to stand up and fight. I’ve got some really cool senators for my state–find out if you do, too.
After our meeting, Senator Kaine and I did a tele-town hall, where a software system calls Virginia residents and invites them to join in on a conference call. The Senator gave me the opportunity to again share my story about what the ACA meant to me before he answered people’s questions.
I was nervous and scared but daaang. I did it.
I told everyone how for a long stretch of time in my teenage years, I felt more comfortable in a doctor’s office than I did in a classroom. How I realized early on that it didn’t matter what I wanted to do when I grew up—I needed to choose a career that was stable, lucrative and had good health care benefits, not one that made me happy. I told them how the ACA changed that and gave me hope—it gave me the comfort that I could take extra time in school because I would have my parents’ insurance until I was 26. I could even take time off to work on my health and health only if need be. How it meant I could buy insurance and be my own boss, freelance as a graphic designer, a dream of a job I had in my mind.
I also told them that the GOP calling the ACA into question with rallying cries of “REPEAL!” without a solid, safe replacement had brought all of this crashing down. I’m now terrified that my loved ones and I will lose our insurance and our futures—we all have pre-existing conditions. Will we be OK? Will we ever have health care again?
I told them that I’m an active participant in my health, I follow my doctors’ orders, I’m a big volunteer in my patient community, I don’t take my diagnoses lying down. But for whatever reason, the plans I’ve heard from the opposition party seem to promise that I’m going to be punished for illnesses I did nothing to deserve and have done everything to get rid of but cannot.
I reminded everyone that health crises happen to all of us, and if not us, to someone we love, it’s just the nature of life. Whether it’s a chronic illness, cancer, an accident—everyone needs extra care at some point in their life, and that’s why plans and laws with protection are so important to me.
After the tele-town hall, I got ready to head over to the Capitol for the grand event. When the Senator’s office heard about how much difficulty I have with standing, they arranged for a senate doorkeeper to bring over a wheelchair and assist me from Senator Kaine’s office to the Capitol.
I couldn’t bring my phone into the house chamber, so this is the only real proof I went
This was the first time I’ve ever used a wheelchair (and the first time I’ve ever even considered using a wheelchair.) My parents were the ones insistent on me using it but I felt guilt for taking it at first—at the time I was having a good energy/health day and I felt like I was somehow gaming the system by accepting an accommodation I didn’t at the time desperately need. But when I thought about the standing in security lines, I accepted.
For those of you unfamiliar with Capitol Hill—the congressional office buildings are connected to the Capitol with underground tunnels and and a trolley system. But even with the tunnels and trolley, it’s a ton of walking and standing. That night, the route to get to the House Gallery was longer and more convoluted with at least three metal detector security check points along the way.
I was feeling great after the town hall. Top of the world, having the one of the best and most memorable nights of my life. And I got to continue that feeling by accepting the accommodation of the wheelchair. If I hadn’t, I would have been sick as a dog, panting, tachycardic, sweaty, confused, shaking. (I know my body.)
How appropriate to have that continued realization that accommodations matter at an event where I represented the ACA as a young woman who’d been living nearly her entire life with chronic illness.
After the labyrinth of halls and security checks, I arrived at the house chamber and got to my seat. I was tucked away in a back corner of the room which I thought at first was a terrible place to sit but turned out to be a huge score—I was next to several family members of members of Congress and got to network by sharing a short version of my story and told them about Dysautonomia International. I also sat 10 feet away from Sean Hannity—that was a huge trip for me seeing as my dad exclusively watched Fox News when I was a kid.
Leading up to the speech, it was hard to make out who was who on the floor of the House—from my seat with a few exceptions, everyone looked like the same old white man. (Sorry.) Thankfully, I had a great view of Senators Kirsten Gillibrand and Elizabeth Warren, two of my personal heroes and women I’d love to both see run for president one day.
The speech itself was surreal.
I live for the State of the Union, and even though it was just a Joint Session address, it sure felt State of the Union-y to me.
It was very different to hear President Trump, a new person, a new president, deliver this type of speech–President Obama was the president of my teenage years and young adulthood. It felt foreign to (1) be there in person and (2) witness a president so polar opposite to the one I was so familiar with deliver remarks in his place.
The most challenging part of the night for me, even more so than the physical strain standing up and sitting down repeatedly to clap for respected guests and a couple of issues I agreed with was the deafening applause from the Republican party when Trump brought up repealing the ACA in its entirety because it’s been a disaster, period.
I was seated on the Republican side of the room and getting caught up in their applause was painful. I closed my eyes, willing them not to cry because hearing “repeal of the ACA” leaves my future uncertain, bleak, nerve-racking.
The ACA is far from perfect, but its provisions have given me hope and security:
- protection for pre-existing conditions
- the ability to stay on my parents’ plan until I’m 26
- mental health parity
- no lifetime coverage caps
I’m publishing this post after the AHCA was thrown out before a vote. It looks hopeful that the ACA will remain the law of the land for a while, and even if that leaves me feeling a little safer, I still feel the need to advocate for it. Because health insurance is the difference between life and death for millions, my loved ones included.
That’s why this matters.
OK, and just to end this on a lighthearted note–
This is the face you make after you crushed it networking, did multiple interviews, had a great time with your senator, advocated for what matters to you, and feel like you’re on top of the world. NO BIG DEAL.
What I want everyone to get out of my experience is that this all came from writing a letter to my senator. I know that attending a Joint Session of Congress might not be the dream night to other people that it was for me, but it made some waves–I showed up in my local newspapers (and a couple of national ones!) and the issues I advocated for got some light. If there’s something you care about, start writing.
Call your members of congress. It’s scary at first, but it’s not so bad. E-mail them from their websites. Write letters. Fax them online. There are so many services that make these things so easy. If there’s something on your mind (even if it’s contrary to what I’m promoting!), let them know. Be active in your government, just like Schoolhouse Rock taught you.
AND! Please be nice to the staffers! Especially the ones on phone duty!
I’m a rambler when I’m nervous. And when I’m not nervous. When I’m perfectly fine, when I’m happy, when I’m angry, when I’m every emotion, I usually talk.
When someone gives me a question I don’t have a good answer to or don’t want to answer, I still answer. I’ll give them an answer to a related question without addressing the fact that I’m not even answering the thing they inquired about. If I’m slick enough, they won’t even notice.
But maybe now, after this declaration, they will.
Sometimes friends ask me about how I’m doing with POTS—and even though I’m always game to talk about Dysautonomia International and the work they’re doing, or maybe cool new research, or the fact that my arm fell asleep in under 30 seconds last night–I know my friend is kindly asking about my chronic health problem.
And here’s where the real baggage comes in.
chronically wide eyed and vulnerable
When there’s been no progress with POTS, I don’t want to tell them that. I hate that there’s been no changes. I hate that there’s nothing new to report in my health, I hate that sometimes it’s even getting worse, because then I’ll have to explain that yeah, sometimes that just happens, and no, it’s not my fault (even though I occasionally blame myself when I shouldn’t) because I don’t want them to blame me either (even when I know my friends and decent humans would never do that).
I run away from the reality of “chronic”, I run away from the reality of life and I divert their attention.
They ask about POTS, I answer about something else.
Sometimes I answer about the progress I’m making in therapy, how I’m not standing still or regressing. How I’m moving onward, forward; how I’m doing something that they can be proud of—even though the very act of getting through a day with one chronic illness, no less a handful, is something they can be proud of their friend for.
Because the vulnerable side of me feels like if I can’t produce results in one area, I better produce results in the other.
Today is a day where I can see things clearly, and I want to say and reaffirm to myself and to anyone who might struggle like I do at times: please don’t feel like your life has to be strictly results oriented. Making an effort, taking care of yourself, being a kind person matters so much more than producing tangible results in work or in health or in any realm. If you have a chronic illness, leave the results to the doctor. All you’re responsible for is effort, that’s all anyone can ask of you.
I didn’t make any formal resolutions for 2017 on New Year’s Eve, but every year as I get older, I realize how important it is for me to be nicer to myself. I want to treat myself today like I would treat the younger version of myself—protectively and with patience and compassion. I look at my younger self and want to wrap her up and say “it’s going to be OK, just hold on!”
I want to have those same feelings for myself now, and by having those feelings, I think I’ll be able to be more honest with myself and with my friends.
And maybe I’ll get around to answering your questions head on.
Seven years ago today, at the age of 16, I had a major POTS episode. But at the time, I didn’t know it was a POTS episode. I was undiagnosed and blamed the whole event on myself, my interpretation of my own laziness, my inability to take care of my body.
My heart rate was sustained at 180+ BPM for close to two hours with a mess of other symptoms (nausea, blurred vision, I was white as a ghost, pain in all of my joints, etc.) and I ended up sleeping on the floor of the bathroom with gastrointestinal problems. My mom tried to take me to the emergency room but I was a headstrong teenager and refused. I reasoned that I was just having a stomach flareup and the tachycardia was a response to me being very out of shape after doing a bit of running around in the heat of summer.
Because for years, those were the things my cardiologists had told me when we asked about my tachycardia.
“You’re fine, you’re just out of shape.”
That night, my mom texted my psychiatrist, the only doctor along with my therapist who believed there might be something else at play besides “harmless” tachycardia. He told my mom to take me to urgent care as soon as possible.
They performed an EKG and they said there appeared to be nothing wrong, but sent me to the hospital where they performed an echocardiogram. Everything was structurally sound. We made appointments with my cardiologist. I didn’t get much help there.
You’re fine, Shannon. Drink more water. Add more salt to your diet. But you’re fine. Nothing’s wrong.
They did a holter monitor a few months later. They never really addressed the tachycardia, the fatigue, the chronic pain, any other symptom. They just referred back to the EKGs and echos. You’re fine, Shannon. You’re fine, you’re fine, you’re fine.
Seven years later, to the day, I just finished up my fourth conference with Dysautonomia International.
For four years, I have now known that I’m not “fine.” My autonomic nervous system is a disaster. Standing up, even for 10 minutes, makes me lightheaded, gives me brain fog, turns my hands bright red and makes my back feel like a twig that might snap into two.
For four years, I have had a new team of cardiologists who believe me. They run EKGs and echocardiograms and holter monitors and even when they come back “fine,” they know that the rest of me isn’t. They know that I navigate a long list of symptoms every day of my life and there’s no saying what comes next symptomatically.
For four years, my psychiatrist and therapist have been able to help me cope and learn to navigate my new normal, my new life with a chronic illness. It’s not easy, it’s not fun, but we now know what we’re dealing with. We know the card we’ve been dealt. We’re no longer in the dark.
I’m so grateful to be here, now, with the resources available to me so I feel less alone. To have friends, support, physicians and information that will keep me going for as long as I have this illness (very possibly the rest of my life.)
I’m had such a lovely weekend surrounded by hundreds of people with this shared experience of dysautonomia–whether it’s the patient or caregiver perspective, we’ve all gone through the journey of “WHAT IS HAPPENING” and have gotten to (or will get to) “OK, we got this.”
It’s not the same as it was seven years ago.
In one of my all time favorite pieces of The Colbert Report, Stephen goes on a journey to sell his portrait for megabucks at a New York art gallery. He goes the whole nine yards—he has it appraised by several art appraisers, he learns all about the art scene from the art curator Simon de Pury, he shmoozes it up at the pre-auction cocktail party, and he crashes the actual auction.
The whole time, he’s happy as a clam (and a little tipsy at the cocktail party) and keeps sing-songing variations of “it’s happening!”
After it aired, I immediately adopted the entire series of phrases. I was soon greeting people by calling out, “is it happening?” or “there’s a happening happening!” every time I felt excited about something. This was occurring at a time when I was coming out of some darkness and finally seeing some light, relief. And it was my spring semester of my senior year of high school, things were very much happening. (Although they weren’t as spectacular as Stephen Colbert dancing to “Gin & Juice” with a Frenchman.)
Stephen & Simon de Pury jamming to Snoop Dog (The Colbert Report/Comedy Central)
Dysautonomia Awareness Month kicked ass all because of volunteers. (Pardon my French.)
Times Square under an assault of Dysautonomia Awareness (Dysautonomia International)
I burst into tears the day I saw that Nasdaq billboard in Times Square was lit up turquoise with the word dysautonomia plastered all over it.
Two years ago, I’d never heard of dysautonomia. My mom and I had trouble pronouncing it—her proclivity for other languages and their rules had her falling over syllables. And I couldn’t keep track of what letters went where. But we got it right pretty quickly.
Two years ago, as we were learning what this disorder was, we were also explaining it to my doctors. We were shopping for cardiologists who had also heard of it, who had heard of POTS. Some would say “no” and offer up a treatment plan, a treatment plan that was completely wrong for me.
Now? Things are different.
Today, I’m getting e-mails from my cousin at a conference for anesthesiology with pictures of poster presentations on POTS.
Today, my friend who works for a T-shirt design company is getting tons of custom orders for Dysautonomia Awareness shirts.
Today, my doctors are collaborating together on new projects. There’s a lot that they do know, and everything they don’t, they’re making plans together to figure out and to treat me in the process.
I recently got some potentially incredible news that my insurance company might be coming through for me on something big. I’m staying ridiculously cautious in my optimism, but this, like seeing the Nasdaq billboard lit up turquoise, was one of those “cry your eyes out, this is happening” moments.
I’ve been pretty fragile lately. My doctors have been wonderful, reminding me that expectations change when circumstances change. I felt like I wasn’t achieving anything and like I was cutting myself too much slack. I should just push harder, that’ll fix it, right? I wanted results, I wanted to see something happen.
But there are some times when pushing won’t fix it. There are some times when you have to pull back a little bit. A lot of people believe that you have to keep goinggoinggoing all the time to treat dysautonomia, but on the advice of my doctors, I’m pulling back just a little bit. I’m just going to keep going at a slower speed and see if I can make things happen that way.
So I’m working on being good to myself, and I’m working on those happenings.
And in the mean time, big things are happening for dysautonomia.
And that’s pretty freaking cool.
“Let’s make it happen!” (The Colbert Report/Comedy Central)
(Please, do yourself a favor and watch all three parts of Stephen’s quest to sell his portrait–it was for charity, after all: part one, part two, part three)
Along with it being Dysautonomia Awareness Month, it’s also the middle of Invisible Illness Week.
Invisible Illness Week has a fabulous meme, 30 Things About My Invisible Illness You May Not Know. And because I miss the days of MySpace and Facebook surveys, I filled it out focusing on dysautonomia, despite having what feels like close to 30 of my own Invisible Illnesses.
If you’ve done the 30 Things survey, leave your link in the comments!
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Postural Orthostatic Tachycardia Syndrome (dysautonomia)
2. I was diagnosed with it in the year: 2013
3. But I had symptoms since: 2003
4. The biggest adjustment I’ve had to make is: Totally changing the way I think, approach things… and I EXERCISE NOW!
5. Most people assume: That if I look fine, I feel fine? I don’t actually know. However, when I’m with friends, I often have to ask them to slow down walking and to take breaks with me. I think people also don’t realize that even on my best days, I’m masking a few symptoms.
6. The hardest part about mornings are: Not hitting the snooze button and dealing with dizziness
7. My favorite medical TV show is: The Mindy Project (is that medical enough?)
8. A gadget I couldn’t live without is: Please don’t make me choose between my phone and computer, I love them both so much.
9. The hardest part about nights are: Keeping hopeless thoughts at bay when painsomnia hits
10. Each day I take __ pills & vitamins. 15 mandatory, 3 as needed
11. Regarding alternative treatments: I think people should do what works for them—we’re all experts on our own bodies and on no one else’s.
12. If I had to choose between an invisible illness or visible I would choose: Invisible, what I have now—I don’t know what a visible illness is like, aside from wearing glasses for bad vision which feels pretty normal. I feel like I have more control over my life and my story this way, and people will generally believe you when you say “I’m going to be sick to my stomach,” invisible illness or not. (#protip)
13. Regarding working and career: I really want a career once I figure out what I’m good at. A psychic once told me I’d own my own business or be my own boss and that it’d happen before I’m 30 and then asked me for help with her iPhone. My #1 priority in life is having health care, so we’ll see how that works into my career goals.
14. People would be surprised to know: I tend to tell people everything, there’s not much mystery in my life (case in point this blog). Maybe that I didn’t learn how to take pills until I was prescribed them at age 10/11.
15. The hardest thing to accept about my new reality has been: That there’s no going back now.
16. Something I never thought I could do with my illness that I did was: Force myself to exercise.
17. The commercials about my illness: Don’t exist yet.
18. Something I really miss doing since I was diagnosed is: I miss my old job sometimes–I went on medical leave when I got a series of flareups and decided to officially leave when I was diagnosed and knew that standing all day just wouldn’t be a good health decision for me.
19. It was really hard to have to give up: the idea of missing out on some rites of passage—thankfully I found some ways to work it out. 🙂
20. A new hobby I have taken up since my diagnosis is: Facebook stalking POTS friends, window shopping on Etsy for Awareness jewelry (especially zebra bracelets)
21. If I could have one day of feeling normal again I would: go to a concert and see what it feels like to stand for an extended period of time as a normal person, run as far as I could just to see what it’s like
22. My illness has taught me: how to entertain myself in the waiting room at various doctor’s offices
23. Want to know a secret? One thing people say that gets under my skin is: when people tell me that I’ll like exercise one day and that the endorphins will kick in. I’m never going to like exercise. I have never felt endorphins in my entire life.
24. But I love it when people: validate me. Tell me, “yeah, that sucks!” and send me pictures of koalas, the dreamboat musicians from Jukebox the Ghost, and also remind me that everything’s going to be ok.
25. My favorite motto, scripture, quote that gets me through tough times is: “You got this.”
26. When someone is diagnosed I’d like to tell them: “Oh my gosh this SUCKS but you aren’t alone! You can do this and let me hug you and now you get to eat all the chips you want!”
27. Something that has surprised me about living with an illness is: for me, it became another member of the family. My parents sometimes discuss my doctor’s appointments with each other like I’m not even in the room.
28. The nicest thing someone did for me when I wasn’t feeling well was: bring me food and check up on me. Making meals is so exhausting during a flareup and having meals made for you (or even microwaved for you) when every bone in your body is aching is such a luxury.
29. I’m involved with Invisible Illness Week because: There are SO. MANY. INVISIBLE ILLNESSES. (All of my illnesses are!) Coming forward and saying “I have an invisible illness” can put yourself at the scrutiny of others as they wrinkle their brows and say “prove it.” But there’s safety in numbers. We’re like a giant phalanx of experiences and stories. (Sorry. I just had the phalanx imagery going on in my mind today.)
30. The fact that you read this list makes me feel: