During one of my many insomniac nights recently, I found myself watching the second Hunger Games movie, Catching Fire. While I knew this wouldn’t exactly soothe me to sleep, there was one quote in particular that’s haunted me continuously:
Haymitch: No one ever wins the Games… There are survivors. There are no winners.
I know I said I’d start a series on the different treatments I’ve tried, but I’m pausing to tell you why I haven’t been able to post in several weeks…
I caught some terrible virus and have been having symptoms again. As a result, I got behind in school, so I’ve had to use all my time to get on top of things again.
To me, one of the most difficult parts of recovering from PANS is how, just when you think you’re done having symptoms, your life can change again in a day. Sometimes, I feel like with PANS, the only certainty you have is the uncertainty of the course of the illness.
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.
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.
Last week, I celebrated the one-year mark since my first IVIG. It’s hard to believe it’s already been a year, yet my recovery has seemed to go so much slower than I thought it would.
There are many things that no one ever told me before my first IVIG. I was warned about the fatigue and nausea and headaches afterward and the post-IVIG flare that would come in a few weeks. I was even warned it could take a year before all my symptoms went away, but I was never told what that year might be like.
“You’re better.”
Those are two words I never thought I’d hear from my doctor. But this week, I finally did.
As my mom and I made the trip to my doctor’s office this week, I couldn’t help but feel that things were different this time—and most of all, that I was different. I was more present. I was more aware. I was bright-eyed again. I was finally myself.
This time, unlike my last visit in May, I opened the office doors myself, grabbing the handles without flinching. I pushed the elevator buttons. I sat in the waiting room chairs without thinking about Lysoling myself when I got home. I realized that contamination OCD was finally letting me go.
Last summer, over the course of a few hours, I suddenly became unable to walk due to an autoimmune attack in my brain. If I tried to go from my living room to the kitchen, I fell multiple times because my legs would suddenly give out.
In one moment of insight during that horrendous time when I had not only lost the ability to walk but had essentially lost my mind, I said to myself, I’m going to run a marathon someday and overcome this. And I’m going to beat my best 5k time from eight years ago within the next year.
It was truly a crazy idea. Maybe I still wasn’t in my right mind when I came up with that…
Even though I love to decorate my room, when I moved into my apartment in August, I could only muster the willpower to put just a handful of small pictures on my bulletin board. During my Freshman year, I’d made my room look like “an Athenian palace,” as one friend put it—at least when I didn’t leave my trash strewn all over the floor (thanks, hoarding OCD).
My lack of decor last semester was an analog of my life. When I finally turned a corner in November, I covered most of my bulletin board with posters, postcards, pictures, and swag from my first 5k race. The better I’m doing, the more things are on the bulletin board.
A few weeks ago, pictures and papers started falling off, one-by-one. I didn’t put them back.
