Last spring I was officially told that I'm in remission from my Autonomic Dysfunction. This is a rarity at clinic - made even rarer by the fact that my true diagnosis has been questioned since the day I got sick. I remembered doctors telling me years earlier that I should have hope because they’ve seen a patient or two as ill as I was that went on to take ‘a few college courses close to home.’ Sitting on the exam table at Milwaukee Children’s for what was hopefully the last time, I laughed at how little was once expected of me. After that I went back to the car. In the same parking garage I once cried in after failing to keep down radioactive eggs and toast, I called my dad. I could tell he was smiling through the phone.
Over celebratory hot chocolate I began to seriously consider moving to Europe. I had been telling myself for many long years that someday I would leave what I know and go somewhere with beautiful places to walk to. I saw an out in that moment, and knowing that I had an acceptance to the University of St Andrews presented me with an opportunity. I brought up this possibility to my doctors and they didn’t immediately veto the idea. Instead, I was encouraged to do it. I think they wanted to believe just as badly that life resumes after serious illness. I even received whisky recommendations from my hematologist as he went over my counts.
I visited St Andrews later that month. After twenty hours of travel I saw the North Sea. It was something different than the fields at home and in that moment I knew that I wanted to be able to go to the water whenever I felt like it. I made the decision to move during that trip, and as afraid as I was I kept reminding myself that I was never one to back down from a challenge. I had earned a good adventure.
I moved into a room with a twin sized bed and a boarded off balcony two months ago. Most days I wake up to eat Rice Krispies alone in pajamas that have dogs, or moose, or some other juvenile pattern on them. Even so I feel grown up. Doing basic ‘adult’ things like laundry or boiling pasta hasn’t lost its novelty yet. It probably will soon, but until then it feels exciting. I used to want to do these things just to know what it felt like . Now I’ve accidentally burnt myself trying to steam shirts more times than I can count and I’ve figured out what cheap alcohol not to buy at Tesco. As someone that only regained the ability to tie my own shoes within the last three years, this amount of independence has been extraordinary.
Occasionally I think back to the hospital and I remember the resident that would give me local anesthetic shots before placing my IV lines. My veins were fragile, they’d often collapse as soon as he flushed them with saline, and he wanted to make the experience more bearable. I want to tell him now that things weren’t really that bad back then, because at twelve pm this Saturday I ran to the bus station while listening to Chateau Lobby #4 at full volume. And songs, bus trips, and working legs would have never happened without the drugs he put through those lines (and the many Zofran prescriptions that followed.)
Together we successfully reset my brain when my nervous system was in pieces. When I took tablets that made my head pound and my favorite foods taste like metal things were healing. Each day dragging myself back for another infusion was worth it. Pathways were repairing and rerouting and I have had no greater privilege than getting to be in my head during the aftermath.
So here I am. Tonight I will take a bus to Edinburgh and stay in a flat with five friends that were strangers just weeks earlier. Next month I’ll throw a party to celebrate being alive on the only diagnosis date I remember - the two year anniversary of my blood clot. Spring will come again, the anniversaries of days that changed my life will repeat, and each and every time it will not be a sad occasion but rather a reason to go on one more walk and have one more adventure. I’d be lying if I were to say I’m not afraid of the unknown ahead of me, but I’ve never felt so alive.