After battling PANS for the past nine years of my life, I’ve been forced to grow up too quickly while being stuck as a child. I’ve had to mature to face up to my circumstances, but I’ve had to count on my parents to take care of me more than most others my age have.
At twenty years old, I’ve never held down a consistent, weekly job. I’ve never had a boyfriend. I’ve never gone on anything beyond a day trip with my friends without an “adult” present. Over the last year, I’ve let my parents make many decisions for me, because I’ve known I couldn’t trust my own judgement. In many ways, I feel like a young teenager.
Recently, a new obsession has been poking my brain:
Am I nuts?
Given what my illness has put me through in the last year, it’s not an unreasonable concern. When I’ve had bad flares—which can consist of screaming out whatever disturbing thoughts are in my brain, running out of the house or throwing myself into walls, having all manner of bizarre involuntary movements, and being unable to focus my eyes—I would certainly appear “nuts” to an outside observer.
While studying in my room one night, I heard laughter and music outside my window and smelled gas and burgers. I looked outside, and half a dozen people were having a wonderful time sitting around a grill, sharing food and stories about upcoming final projects.
And that’s when it hit me—I’m so lonely that I don’t even know I’m lonely. I’m so lonely that I forget how much I miss spending time with people—until I see others doing it.
After eight years of searching for a diagnosis and then finally discovering I had PANDAS, it wasn’t enough for my family and I to simply know what my illness was. We wanted to know what caused it and who or what could be responsible:
Why did I get sick? What could’ve been done so that this never would’ve happened?
We blamed the doctors for brushing me off for eight years. We blamed them for not being willing to consider thinking outside the box. We blamed them for giving me more and more diagnoses while never stepping back to consider a single cause for all of them—while we insisted there had to be one. Continue reading “The Blame Game”→
Lately, I’ve been having a harder and harder time with cognitive problems. I make stupid mistakes in school now that I’d never make in the past. I say the wrong words without knowing it. I mix up left and right as if I were six years old. I’m very forgetful. I do a lot of small but silly things everyday—little things that anyone might do once in a while but the fact that I do them so frequently makes me feel as if I’m losing my mind.
It’s just a doorknob—just a little piece of metal attached to my door. For most people, it’s an overlooked necessity that doesn’t get a second thought. But for me, it’s a peril.
Until a few days ago, I’d gone the entire school year without ever touching my bathroom’s doorknob. I avoided this by either leaving the door cracked enough to let me use my feet to open the door, or I grabbed the doorknob with a designated washcloth that I kept nearby. Unfortunately, I often don’t touch any other doorknobs or handles of any kind in the rest of my apartment, either—not the refrigerator, not the microwave, not the cabinets, and not even the doorknob to my own bedroom.
Recently, I had the misfortune of losing my wallet. Anyone would be upset and worried about losing something that contained your credit and ATM cards, driver’s license, school ID, cash, car keys, and apartment keys. But I had another concern: as soon as you open my wallet, you can see a medical information card that gives away all kinds of personal health information.
If I were ever in an accident or had another emergency, it’s a good thing that this information is so easily accessible. But in this case, I couldn’t help but wonder who was going to read it. There’s no way whoever found my wallet wouldn’t see it. I had managed to keep my illness a complete secret from everyone but my close friends and professors, because I didn’t want to be treated differently. Would this be the day that everyone found out?
This time of the year is always difficult for me. Seven years ago at this time, I had the worst PANDAS flare of my life and descended into a terrifying world of OCD, odd behavior, insomnia, and depression. For a time, my symptoms completely tore apart my family.
I’ll never forget when I first made my parents cry. I was twelve years old, and we didn’t even know I had OCD, let alone PANS. Had we known, things never would have gotten so bad. My parents were almost as terrified as I was at the change they had seen in me.