The night after I wrote my last post, I must have slept for about twenty minutes. I didn’t get to bed until 1:45, and not even 100 mg of Seroquel was enough to stop the anxiety that kept me awake. All I could think about were all of the PTSD triggers I was about to encounter. I can’t do it, I thought to myself.
Today, I live my life free from PANS psychiatric shackles and its medical mayhem. At this point, I’ve mostly forgotten where I came from and how sick I used to be. PANS no longer affects me… or so I think.
Years ago, I was able to lock away the feelings of terror and despair that were once my constant companions. I now choose to live in the present and do my best to make the most of this second chance at life I’ve been given. Why think about the horrors of the past when I can make a new and better future for myself?
It was 2:30 in the morning when I awoke to a knock on my door and opened my eyes to see a man in black standing over me. My heart pounding, my sheets drenched in sweat, I tried to scream, but all that came out was barely a mumble.
And then he was gone.
It wasn’t real… Or was it? I sat up and shone a flashlight all around my bed, and in my closet and bathroom looking for the intruder. How could I be sure it was a hallucination when I really did see a person in my room? How was I supposed to get back to sleep when I wasn’t 100% sure the whole thing didn’t happen?
A few months ago, I made a scary last-minute decision: I was going to re-apply to grad school, this time at “State University,” close to home. And today, I successfully got through my first class!
As many of you know, I did a year of grad school at a competitive program out of state before Myalgic E waltzed into my life and forced me to abandon my education, at least for a while. But this spring, after a lot of improvement due to a round of Rituxan, it started to bother me that I hadn’t finished school. I realized after two years away, it was finally realistic to go back, at least part-time.
But what I didn’t realize was the reality of going back to school. I didn’t realize how different it would feel after being in industry for two years and being three years older than when I started. But even more, I didn’t realize how compromised my brain is in more ways than one.
Like many schools, mine required entrance exams, which were online this year. I petitioned to be exempt since I already had a year of grad school behind me, but the school came back and said they would use a shortened version to determine if one of my classes would transfer or not. So there I was, with a week until the exam deadline, trying to relearn material I hadn’t thought about in four years, since undergrad.
But no sooner had I got out my old class notes from undergrad that the ghosts of PANS past came back to haunt me.
If you’re new to my blog, then you don’t know the disaster that was the last semester of college. My encephalitis started to come back the week before classes started, and it just got worse and worse from there. My brain was so inflamed that it took multiple weeks of IV steroids to come out of it! Rather than reinvent the wheel, I’ll share a paraphrased excerpt from the book I wrote about succeeding in college with a chronic illness that gives a tiny sense of why that semester was so hard:
Although I had been physically in class every day that semester, it was truly as if I had been gone for the first two months. After I ‘returned,’ I had to re-learn all the material, starting from square one in some areas. My professors had graciously removed all deadlines of assignments for the rest of the semester when I told them what was going on, and that’s the only reason I didn’t outright fail.
However, my ability to read, stay focused, and figure out how to break down tasks into smaller, manageable steps were always some of the last aspects to improve after an encephalitis relapse. Getting through the rest of that semester would mean scaling a mountain with two broken legs and two badly sprained arms.
To this day, I have nightmares that I didn’t finish catching up on all of the assignments I missed in that last semester. I have dreams where a professor informs me that I didn’t actually graduate, and I have to go back and take the hardest class of my major again. For a long time, I couldn’t believe I had really pulled it off, but I also did my very best to forget what that semester was like as soon as I finished writing my (yet to be published) book.
But the other week as I studied, it was impossible to forget. There in the lines of my class notebook from that semester, you could see plainly the decline in my handwriting from the first day of class to right before I got steroids. (A decline in handwriting abilities is a hallmark symptom of Basal Ganglia Encephalits, aka PANS.) And then you could tell when I got the steroids, because then my handwriting was neater than ever. It was eerie in an intimate way that re-reading my blog never has been.
Again, I tried not to dwell on that semester too much as I studied the material in the notebook. But a couple of days later, when I went to take the exam, it came back to me yet again.
Before I even started the test, I was shaking all over, and my heart was starting to pound. I told myself I would do fine because of how hard I had studied, but it was no use. As soon as I opened the test, I completely choked and couldn’t remember anything. Then I was in a true panic attack, having a meltdown all over again, just like I might have when my brain was inflamed.
Test-taking anxiety (at least to that degree) has never been something I struggled with. This was a trauma response. This was my body remembering all of the pent up fight-or-flight that I constantly lived in while facing PANS and trying to get through college. This was remembering the times when I was fighting to use every once of strength just to show up to class. This was feeling the pressure again of being in one of the hardest majors of the university while also horribly ill.
Time and time again, even three years on from the last time I felt like a PANS patient, I realize how traumatic the whole thing really was. I didn’t realize that at the time because I was just trying to get through, and my brain was too inflamed to understand. It was after I started to improve that I realized something very terrible had happened to me, and now I was going to be spending who knows how long trying to get back all of my “self.” PANS is an invisible trauma that’s impossible to understand until you live it.
It’s no wonder that so many things related to that time in my life will still evoke a panic attack.
Nevertheless, I was able to calm down enough to get through the test. And I did well enough for them to accept my credits!
Understandably, I was nervous about what other school-related triggers I might have, but I showed up to class this morning and didn’t panic. Actually, I enjoyed being in class again. Showing up on Zoom isn’t something I ever had to do in college, so maybe it is different enough not to trigger me. Maybe if I get through this semester, I’ll be able to go in-person eventually without panicking, either. It’s okay if you have to slowly work up to doing whatever it is you want to do. It’s okay that I have to go only online and take only one class at once.
There’s a lot messed up in the world right now, but I just wanted to share this victory of coming back to grad school after M.E. tried to stop me, and despite my PTSD. I don’t want to say “if I can do it, anyone can,” because we’re all unique and that’s not true. You can do things I can’t and vice versa. But I hope that maybe knowing that I have been able to go back to school after all that I’ve been through can be a ray of hope for anyone struggling or worrying about doing so themselves right now.
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.
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.