After eleven years of brain-related chronic illness, I’ve come to live in a constant state of uncertainty not only regarding my conditions, but regarding my entire life.
I never imagined I would ever get sick in the first place, let alone to then be sick for over a decade. The fact that my illness happened at all has taught me that no matter how certain you feel about your life, you can’t really know what the future holds.
even when I’m doing well, I can’t let down my guard…
There’s no single cure for my conditions, PANS and Lyme Disease, that guarantee they won’t eventually come back. Yes, there are treatments that put them into remission, and most people who get the right ones for their particular case eventually get better and go on to live their lives. However, no one can ever promise that either disease won’t return at some point in the future.
I can’t know that PANS won’t come back and make me lose my mind this year, this month, or even this week. The “A” in PANS isn’t “Acute-onset” for no reason: everything can change in an hour or two.
PANS is an autoimmune disease that attacks the brain, creating all manner of miserable neurological and psychiatric symptoms. It’s triggered by bacteria and viruses, and sometimes all it takes is a brief exposure.
Therefore, my life is defined by precariousness, literally one infection away from insanity at all times.
For all I know, I’ll cross paths with Strep or flu while out running errands today, and then it’ll re-trigger PANS into attacking my brain all over again. For all I know, maybe that flare-up wouldn’t respond to any of the treatments I’ve done before, like antibiotics or steroids—it could be a relapse so strong that I’d have to move straight to plasmapheresis or Rituxan and then spend months healing my brain.
Of course, the vast majority of the time that I’m around someone who’s sick, or if I catch a cold, it just means I start having more involuntary movements/tics and my depression returns. Usually, I can take anti-inflammatories, wait it out a few days, and then go on as if nothing happened. But what if the next time is different? And what if I catch something more serious, like the flu?
With this year’s flu being particularly virulent, I feel like I’m tiptoeing through a minefield whenever I’m in public. I’m always waiting for the other shoe to drop, anticipating the next time an illness will come out of nowhere to trick my immune system into attacking my brain.
The truth is that I don’t fear the unknown: I fear the known torture that will ensue the next time my brain becomes inflamed: the bone-crushing, gut-wrenching terror and despair that don’t respond to medication or therapy. I fear the loss of my entire personality and everything that makes me myself, as my illness has the most horrible way of stealing. I fear the pain of an autoimmune disease that doctors continually mislabel as “psychiatric” and refuse to treat—for which I have to go through the back doors of the medical system to get appropriate care.
These days, I’m doing okay, neither in crisis nor completely well. Indeed, I’ve spent most of my years of PANS in a state like this. However, times like now can be the most difficult to cope with, because I feel like I’m walking at the edge of a precipice; I’m acutely aware that if the right trigger came along, I’d easily be pushed off the cliff. In better times, it’s easier to forget that there’s a precipice at all, because I’m much farther from the ledge in the first place. And in the worst times, my brain is so impaired that I’m literally incapable of processing the full horror of my disease.
This week, my therapist asked how I deal with the uncertainty of PANS and Lyme. How can I cope with the knowledge that I could lose my mind any day, and then have my life completely derailed for months?
I had to ponder it for a while, until it occurred to me that my coping strategy is, 99% of the time, I simply don’t think about what might happen if I had a flare or relapse…
For me, it comes down to living in each moment.
No one knows what will happen to them tomorrow. I share my uncertainty with every other human being on the planet—it’s just that I’m more cognizant than most about how precarious and fragile all of our lives really are.
For this reason, I’ve kept living as much as I could for the last eleven years. I don’t know when I’ll get better, and I don’t know when I’ll relapse. What I do know is that I have one life and one “now,” and I’d rather not waste it thinking about what may or may not happen.
Of course, it’s easier said than done sometimes. I do worry about whether I’ll ever be able to hold a job, find a partner, or even just live a more “normal” life, free from constant treatments and medications and appointments. Sometimes, I’m afraid to have any dreams, because I fear I’ll get sick again and have them taken from me right as I start getting successful.
Nevertheless, I keep moving forward, despite my uncertainty and anxiety.
Over the last few weeks, I’ve been applying to graduate schools. I don’t know if I’ll be well enough to go come September, or even if I’ll want to. I don’t know where I’ll study, or exactly what I’ll do when I’m done.
But what if not knowing is part of life’s adventure?
After eleven years of chronic illness, I’ve realized that uncertainty is a teacher, helping me see that it’s okay to not have all the answers. Uncertainty has taught me that all any of us can do is to embrace each moment, taking life however it comes.
Yes, my disease means I live on a precipice, but I can either cower in fear or dance through the journey—either way, I’m stuck on the ledge for the time being. And so, I’ve decided to keep my grad school and career options open and keep dancing through life anyway.