This is the fifth (here are parts one, two, three, and four) in a series about my teenage years, which were spent almost entirely in a state of defiant self-destruction and non-compliance. It is the hardest part to talk about, so the posts will not be posted one right after the other. Thank you for bearing with me.
The switch from out of control to tight control was jarring. I spent four days at the Joslin Clinic in Boston, participating in their DoIt program, which was a one-stop reboot. In those four days, I had laser surgery on both eyes, got actual, effective treatment for the neuropathy in my legs, saw a psychologist with experience in pediatric diabetes (who would later help me find my psychologist of 20 years), and was referred to a doctor close to my college who had trained at Joslin and practiced their forward-looking techniques.
Oh, and my mom insisted on dragging me all over the city despite the pain in my legs because she didn’t want me losing any more mobility. Understandable since she was the one who fixed me after the meningitis, but still painful.
But it wasn’t all smooth sailing after that. I settled in quickly enough to a healthy medical routine. It’s not too hard to figure out what to do when you have been studiously doing the exact opposite it for half a decade. The onslaught of complications supplied the motivation.
As things settled into a routine, I noticed that I was having trouble finding words. Anyone who knows me will see this as a red flag. Finding the right word, even finding the word someone else is searching for, is a talent of mine. It felt like a glitching computer. I would try for the word and experience what I can only describe as micro freezes. Eventually, those freezes turned into little seizures, which I only knew about because I cut my hip in the shower and couldn’t remember how it happened.
Then one Sunday morning, I had a big seizure. I had been playing Scrabble with my mom on her bed while my dad snoozed. The next thing I know, my mom is grasping my wrist to keep me from falling and my glasses were halfway across the room. My dad was white as a sheet remembering the seizures that had come with the meningitis. It took my psychiatrist to figure out that 0.3% of people who take amitriptyline react that way, so I stopped cold turkey, which was dangerous. Usually, one has to scale down the dosage, but we decided that even one more day was too dangerous. (Amitriptyline was also responsible for a few unexplained severe low blood sugars, two of which caused me to pass out – the only time I ever have – which in turn scared my parents enough for my mom to accompany me to college for several weeks at the beginning of second semester sophomore year.)
It wasn’t just this, of course. One example does not a weirdo make. There are also the veins that seem to disappear just in time for blood to be drawn. There’s the kidney disease that got better. There’s the gastroparesis and autonomic neuropathy that present with symptoms opposite from most people’s and the formerly paralyzed half of my body that sometimes decides to stop listening to my brain. I could go on, but you get the idea. My body is a textbook breaker and, if nothing else, it has taught me – and my clinicians* – to expect the unexpected. It is definitely a weirdo wonderland.
*This is, of course, one of the primary reasons that I look for clinicians who are 1) open-minded, 2) experienced enough to have treated other weirdos – you know who you are -- and 3) take me and my concerns/questions/fears/anxieties/research/speculations seriously.