To be faced with PANDAS is to have a lot of debilitating symptoms and feelings all at once that, in essence, make you lose who you are. There is much to say about what it feels like to have PANDAS, but if I had to sum up my experience in one word, I would say…
Terror.
It’s 8 AM on a Saturday, and rather than sleeping in as you might expect for a college student, I’m lacing up my running shoes and getting ready to bolt across town.
However, this weekend, when I opened my blinds, I almost pulled the covers back over me; I saw it was raining with no sign of stopping.
I’d never run in the rain before, and the mere idea of it caused the shivers. I had so much homework, and the only time I had to spare was in the morning. But I love running so much. How could I let a little bad weather keep me from it?
One of the hardest things about PANDAS is that you never know what it’s going to do next. Just as you’ve finally gotten your life back, it can strike again. Or just as you’re sure the fight is hopeless, things might turn a corner. Sometimes, it seems like there’s no rhyme or reason to its course.
Indeed, it wasn’t too long ago that my doctor said I was in remission. My family and I were stunned at the improvements I was making after my tonsillectomy. But this week, the unthinkable has happened: I am, once again, having a flare.
When most people who’ve dealt with PANDAS or PANS think about being out of control, what probably comes to mind are episodes of rage, debilitating OCD, constant tics, and panic attacks. While these things are the most characteristic of the disorder, during the last few weeks, I’ve been finding that sometimes, you can be out-of-control and look totally fine on the outside.
A few months ago during one of my trips home, I came across an old lock-box where I used to hide things as a child, but I couldn’t remember what I would’ve put in it. Tiny toys? Candy? Secret notes?
What I found there instead shocked me.
As I made my way through the halls to my neurologist’s office last May, I stopped in my tracks as I saw a face I recognized. She was receiving IVIG and roaming the halls hooked up to an IV bag pole, accompanied by her mother and a nurse. She was exhausted. There was no light in her eyes. She had a sense of burden and deep sadness about her that penetrated to the depths of her soul.
Once you’ve seen the face of a child with PANDAS, you can never forget it.
This week, I woke up and cried.
99% of the time, I focus on how wonderful it is to be in remission, and I don’t allow myself to think about how awful my life used to be. I don’t let myself feel sorry for myself. I try to not dwell on the past. But several nights per week, I have nightmares—most of which revolve around everything that happened to me. And these are what break me.
It’s 3 AM on a Saturday night, and I’m not even close to being ready to sleep. Am I out late partying like some other college students? No, I’m unwillingly sitting on the couch doing nothing and putting off going to bed for no good reason, after trying and failing to get any homework done all day long.
It was the first full week of class, and just like Freshman year, I had gotten sick. My body ached. My head pounded. I felt exhausted.
When you have PANS, getting sick is often far worse than just feeling tired and congested—in the past, a simple virus could send me into a full-blown flare of severe OCD, panic attacks, involuntary movements, and even hallucinations. So naturally, when my nose started running last week, all I could think about was how much I didn’t want to flare. I couldn’t have cared less about the cold symptoms themselves.
A few days ago, as I strapped on my backpack and headed out the door for the first day of the school year, I couldn’t help but be excited to start my first semester as a healthy person. How wonderful it would be to do college without debilitating neurological symptoms!
As I’ve said in previous posts, I never know how ill and out-of-it I’ve been until I get better. While I’ve always known when there was something “off” about me, I’ve not always been aware of the severity of it at the time—by definition, this is partly what made me “out-of-it.” The more I’ve recovered, the more of myself I’ve realized I’d lost to PANS.
