Trump’s inauguration and the promises he makes scare me. I stay up until the early hours of the morning writing letters to representatives and senators about why his presidency will be a disaster, and why we need to protect the ACA, and why I’m scared.
Senator Tim Kaine’s office emails me and say they really appreciated my letter about the Affordable Care Act and they ask if the Senator can read it on the floor of the senate. Yes. Of course. Please, read it.
A week later they call and ask if I’m free to attend a press event downtown. Of course I am. They send me an e-mail with details, letting me know I’d be Senator Kaine’s guest to President Trump’s first Joint Session of Congress… all because I wrote a letter about the ACA.
Mom, Dad and I go downtown and meet with the Senator and talk about how hard it was growing up sick. We tell him about POTS. He listens. He understands. He puts on the dysautonomia awareness pin I give him. He’s great.
I attend the Joint Session and sit next to Heidi Cruz and Nancy Pelosi’s son-in-law. It’s out of this world.
I go to visit my cousin Catherine and her wonderful family in Utah for two weeks so I can get some space, time to reset, time to relax.
I’m sick almost the entire time. I’m up most nights with agonizing stomach pain–I can’t remember if it’s ever been this bad. I try to decide if I need to go to the emergency room or not. I decide I would rather suffer in the comfort of a private bathroom and not deal with hospitals. I text my mom, I fall asleep on the floor of the bathroom, and I pray the pain will go away.
Catherine checks on me and brings me chicken noodle soup from a local chain called Kneaders. After vomiting all night, this soup tastes better than anything I’ve ever had in my life.
Pizza Party goes to the beach for the weekend together. I have never gone on vacation without my parents. The moment we leave, I’m happy, and free, and excited.
Our Airbnb is next to a restaurant that serves the greatest crab dip of all time, has a swimming pool and hot tub, and we drive to different beaches with almost no waves but we bob around in the water with inner tubes decorated like pink donuts.
The weekend is perfect. It’s just too short.
It’s DysConf time.
I present twice and run the Teens Programming and run around with my friends and dysautonomia family. On Sunday, Katherine, Katie and I lock ourselves in the office and put together close to 100+ schedules for Lobby Day.
A six foot tall dream of a woman enters the office and asks if we’ve eaten. We all ignore her and tell her we’ll eat eventually, we have more pressing work to do. She tells us that’s unacceptable for anyone, especially three people with dysautonomia. She asks if we have allergies. Thirty minutes later she returns with tacos, chips, and salsa for all of us from District Taco. We try to get out money to pay her, but she disappears. That’s how we meet Jenna.
Following in line with tradition, Lobby Day is the hottest day of the year (or at least feels like it). I’m group leader for the Virginia state group, and we attend all of our meetings together. I feel prepared and proud of myself, confident as I lead the meetings for our group.
I can do this.
There’s a hurricane headed directly to where Andy and Lyndsi live in Florida. I’m terrified–what if the ocean sweeps them up and then an alligator eats Lyndsi and Andy gets struck by lightning while golfing in the eye of the hurricane?
We convince them to evacuate up here and stay with us for a few days. Lyndsi takes me to TMS, we go downtown, Lyndsi convinces us to go see IT, Andy and Lyndsi cook for us, and we play with the dogs.
My depression is getting worse, and worse, and worse. I’m fighting it so hard.
I have my routine. Wake up. Go to TMS. Come home. Watch the three episodes of ER that air on cable every day. Work on the online auction I’m running for Dysautonomia International. Keep in touch with friends. Do whatever it takes to keep going.
There’s a Dysautonomia International event in Bethesda. I go and it’s the first time I can breathe in weeks. I’m with my people.
Erin comes to visit. We go to Frederick and visit our favorite store and walk around and things feel doable. We get sandwiches at a new grilled cheese place in Leesburg. We hang out with the guys and Sara.
It’s going to be OK. It’s going to be OK.
Jose and Sara’s parents are in Colombia for the holidays, so they spend them with us. We go to the Bohn’s on Christmas Eve and eat IHOP at our house on Christmas Day. Sara and Jose make hand-painted ornaments for every member of the family, including Duke and Casey. They’re the most precious decorations we own and only confirm the fact that I have the best friends.