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.
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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…
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:
- 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.
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.
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.
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OK, and just to end this on a lighthearted note–
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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!
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