Historically, #DysConf Lobby Days have been on the hottest days of the year.
This year, at with a high of 91 degrees, it was actually the coolest Lobby Day we’d had so far… and let’s just say I FELT every single one of those degrees.
We arrived downtown later than we’d planned and booked it to the Capitol for our group photo as best as a group of POTSies could. I got to help hold the banner in the front row (holding banners is a rarity for me as a tall person), but I was relieved when the photo taking was over because OH MY GOSH it was bright and hot out.
We would be talking with our members of congress about two issues that day:
- We would ask all of them to attend or send a member of their staffs to a Congressional Briefing on Autonomic Disorders this October
- We would ask them to help us obtain funding for a CDC Epidemiological Study on POTS (which has never been done before)
I met up with Team Virginia and we walked over to the Hart Senate Office Building for our first meeting with Senator Warner. I was assigned as Group Leader (AYYY!) and was a little jittery about it but felt confident as I spent the night before practicing and going over materials with Katherine and Katie. Plus, at my previous Lobby Day, Dr. Chemali was our group leader and he was the *perfect* person to learn from in terms of persuasive speech on dysautonomia. (Pro-tip: on your first Lobby Day, invite a world class physician to go with you and beg them do the talking. They’re AMAZING at it.)
Our meeting with Senator Warner’s Legislative Aide went very well—she was extremely kind and passionate about her job. She was brand new to her position—just three weeks in—but had been working in the health care field for quite some time. She listened to us closely and thanked us for educating her on dysautonomia as she hadn’t gotten to learn about disease-specific issues in her career yet. We all felt very motivated after that meeting to go on to our other ones.
Our group split in half after that point—mine went on to meet with Representative Comstock’s and Senator Kaine’s offices.
Our feet and bodies were giving out so we Uber’d across the Hill to Rep. Comstock’s office and in the middle of the meeting we heard a huge blast but all thought nothing of it. (The meeting was going well, so that’s all that mattered.)
When we came out of the building, there were ambulances next to the Capitol and policemen blocking the streets and almost no cars anywhere. We later found out that a car had run into a barrier, injuring a policeman, and the police detonated the trunk to see if there was anything dangerous inside the car.
All while we were yards away. Always fun on Capitol Hill, right!?!?
Because of the blocked traffic, we had to walk back across the Hill this time (my shoes were tearing up my feet… NOT fun), and we hung out in the Dirksen cafeteria until our meeting with Senator Kaine’s office.
Meeting with Senator Kaine’s office was great—it was definitely a flashback to my visit last February—and his staff was so enthusiastic about health matters. It meant a lot to have our voices heard (and I did feel like our voices and concerns were heard by everyone we met with); it was heartening, it was what’s SUPPOSED to happen when you meet with your representatives. It’s these types of moments that legitimize Schoolhouse Rock videos—the process seems to be working correctly!
And if it doesn’t work correctly, we got e-mail addresses and phone numbers to follow up on continuously. 😉
We walked back to “home base” after our meeting which was a room at a United Methodist Church building on Capitol Hill where we provided more snacks and drinks where the buses could pick us up. But since the accident had closed everything down on the Hill, our leaders were scrambling to figure out where to send us to get picked up.
When we finally got on the buses home, my brain started to slow down… because this meant the conference was fully over. I tried to calm down, but I still had the adrenaline of the last few days in my body.
We got back to the hotel and I said more goodbyes (there are some people you have to say goodbye to at least six times) and my dad picked me up on his way home from work. I came home with way more stuff than I arrived with—I got to take home some leftover materials and souvenirs.
I arrived home, had dinner, took an hour long bath, and was surprised at how long I stayed up that night—I was still wired. I missed everyone terribly from the moment I left, but was glad to be back in my own bed (there’s nothing better).
Lobby Day was HARD, but more so physically than it was mentally.
Taking meetings with staffers from members of congress isn’t as scary as it seems once you do it a couple of times—especially when you have a group with you. The hardest part was the walking (and the fact that my shoes betrayed me.)
Sharing our stories was easy and natural. We’ll be following up with our representatives’ offices to see if we can really make change happen (hopefully we can!)—but the important thing is that it’s in their heads now and that we’ll keep going back, even if it requires another visit in 90 degrees.
I’ll just bring better shoes next time and hope no accidents happen.