These days, when friends ask how I am, I tell them I’m fantastic—and for a moment, I almost believe it.
I tell them about my new projects. I tell them about grad school in the fall. I tell them about a professional development program this summer. When I talk about everything I’m doing, I fool everyone—even myself—into thinking I’m healthy.
But those days seeing friends are the good ones.
I tend to forget how I couldn’t use my hand on Tuesday because of a dagger-like pain ripping through the joints. I forget the five-day migraine, when every step rattled my brain and radiated waves of nausea. I forget my mind is so much slower than it used to be. I forget that, last weekend, I ran half a mile, and then I spent the entire week in bed far more exhausted than after I ran my first half-marathon three years ago.
It’s not that I’m trying to lie to anyone—it’s because I’ve been sick for so long that my idea of “doing fantastically” is nothing like a healthy person’s. To me, I truly am doing well.
Compared to most 23-year-olds, I function somewhere between 50-75% right now. But this is a far cry from eight months ago, when my immune system went rogue and attacked my own brain in what I now call, “The Big Relapse.”
Back then, that autoimmune assault put me into a constant slow-motion panic. I was trapped inside my head and unable to process the world around me. I went to every class, but I barely caught a single word of each lecture. No matter how hard I tried, this former straight-A student gave nonsensical answers on every assignment.
Oh, and what my loss of cognitive skills, bone-crushing depression, and involuntary movements didn’t ruin, my eating disorder did. I spent the whole semester alternating between starving myself and binging, wondering every day when my body would give out.
I see the light at the end of this long, dark tunnel.
I wasn’t well enough to get a job after graduation in December, but in the last few weeks, I’ve started working on my own projects. My lingering depression and anxiety, coupled with the eating disorder, had crowded out any interest I had in my work until recently. I couldn’t even think about the dreams I once had, let alone have the energy to be productive. Now, I’m working a couple hours per day and enjoying what I’m doing.
Nevertheless, it’s painfully obvious that my brain is still healing. I can’t work for more than half an hour at a time, and there are days when I lose focus every couple of minutes. Sometimes, tears of frustration well up when I remember how much easier these tasks used to be, and I wonder how much easier it would be without my cognitive disabilities.
And that’s when I realize: I’m doing really, really well.
With other kinds of autoimmune encephalitis, such as Anti-NMDA Receptor Encephalitis, people can take a year or more to recover—and some are sadly left with permanent brain injuries. Why should I be surprised that I’m not 100% six months later, either? Healing a brain is a long and complicated process, and my neurologist said my case of PANS is a form of autoimmune encephalitis, after all.
Moreover, if I’ve had Lyme disease for eleven years, as my Lyme specialist suggests, why am I surprised that I’m not recovered from that, too? It takes many people years to get the infections under control.
No, I’m not where I want to be, but considering where I was a few months ago, I’ve come a long, long way.
It’s amazing that I’m even thinking about my future and my career, rather than just how I’ll get through the day. When I step back and remember where I came from, I should be impressed with even the humble amount of work I’ve done in the last few weeks.
Maybe to some people, I’m not doing well. But to me, given the Lyme and PANS monsters I battle, I know the truth: I’m doing a fantastic job living my life as fully I can.