This week, I have wonderful news… Instead of moving home for the summer like I’d planned, I’ve decided to remain at school to take classes and work.
While this may sound like a “normal” summer for an almost-20-year-old, for me, it’s a huge victory. Not too long ago, I hated everything and wanted nothing more than to go home and spend my summer lying on the couch or in bed (just like last summer). But now, I want to keep pursuing my dreams in this city—dreams that I’d pushed to the back burner for far too long because of my illness.
When I called my parents yesterday to inform them of my decision, I didn’t know how they’d react. I thought they might try to make me change my mind, but instead, they said my plans were, “the best news ever.”
“I feel great,” I said on the phone. “Really great.”
“How’s your OCD?” my mom asked.
And there was a long pause…
Recently, I’ve been having a hard time with sensory sensitivities. If I feel certain sensations or see certain textures or hear certain sounds, I’m thrown into a flurry of compulsions and tics to try to get rid of the physical discomfort.
For example, I can’t stand it when my feet rub across the floor or the ground in a certain way. If it happens, I have to go “undo” it by stepping on the same spot again or rubbing something else in a “good” way. Just thinking about the noise and the sensation makes me very anxious. When it gets really severe, sometimes I won’t move until I can convince myself that it wouldn’t be “that bad” if I accidentally made the sound happen.
“Well, mom,” I said, “It’s gotten to the point where I’ve considered putting rubber mats on top of all the carpet in the apartment…” (For some reason, sliding on rubber or plastic doesn’t bother me nearly as much.)
“That’s not good.”
“Yeah, I know. And then I had a couple of days when I could hardly eat… And I’m sleeping terribly and can’t stay awake without Provigil… And then there’s the ADD…”
“Well, what’s so great about how you’re feeling now?”
It’s very hard for me to identify what it is, much more to explain it, but I feel a night-and-day improvement compared to where I was before my most recent IVIG. I’ve previously written about how my perception of the world and my awareness has improved, but to put it another way:
I may still have symptoms, but my symptoms don’t have me.
I’m not completely consumed by this disease anymore. I have a life that isn’t just about fighting PANDAS. I’m doing everything I want to be doing—even if it takes me longer than most people, and even if it takes more effort. Yes, having PANS causes significant difficulties, but I’ve learned how to work around them somewhat, and I’ve come to accept my life for what it is right now.
Certainly, I’d prefer to not have any of the challenges that I have. I want this IVIG to take care of everything that’s left. I don’t want to be tossed into the throws of partial insanity when I finish my Prednisone taper next month (I’m down to 8mg now!). I want to stay at school over the summer like I’ve planned—and not in isolation at home after a plasmapheresis hospital stay.
But I suppose if push comes to shove, I still want to be cured more than anything else, so I’d go home for treatment this summer if I needed it…
For now, though, I’m going to keep living as if I’ll get to have a “normal” summer, because I like looking forward to something normal—even though I know there’s a possibility that I’ll have no choice but to go home…