Why I’m Doing Better Than I Think

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.

But today? It’s taken six months since autoimmune treatment, sixteen months of Lyme treatment, two months in intensive outpatient therapy for my eating disorder, but…

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.


Is There Hope in the Unknown of Chronic Illness?

Three months ago, as I drove away victoriously from the IV infusion center for the ninth, and final, time that semester, I almost dared hope I’d left behind the last three years of treatments and relapses… Almost.

It was the end of my college career, and I’d just spent its entirety fighting Lyme disease and an autoimmune condition that doctors still aren’t sure how to treat—or what the long-term prognosis is. I’d not only juggled exams and papers and weird living arrangements for four and-a-half years, but I’d been battling through countless procedures and medications and appointments—always in the naive hope that my illness would soon be over. Continue reading “Is There Hope in the Unknown of Chronic Illness?”

I Wasn’t “Sick Enough” to Have Lyme. Then 2017 Exposed a Shocking Truth…

I’ll never forget the day I first set foot in a Lyme clinic, as I watched other patients with pale, exhausted faces roll into the waiting room in wheelchairs. I’d just finished another semester of college and a ten-mile run that weekend.  I remember thinking, I can’t possibly be sick enough to have Lyme Disease.  What am I doing here?

Continue reading “I Wasn’t “Sick Enough” to Have Lyme. Then 2017 Exposed a Shocking Truth…”

I Did 8 Weeks of IV Steroids. Here’s What Happened…

This semester, I wasn’t at school until October… Though I’d never missed a single day of sitting in the classroom.

After returning home from my summer internship in August, where I’d felt almost 100%, I noticed symptoms creeping back in. At first, I waited it out to see if they would pass, but I kept getting worse and worse, slipping farther and farther into a tormented mind that I no longer recognized. Continue reading “I Did 8 Weeks of IV Steroids. Here’s What Happened…”

What I Really Mean When I Say I’m Fine

My life with PANS and a brain on fire! (cred: KC Green)

As I hurried off to class the other week, suddenly, I knew things were awry: it was that strange and all-too-familiar feeling in my head that foretells a drop attack.

Continue reading “What I Really Mean When I Say I’m Fine”

Is This a Nightmare Come True?

Sometimes, you don’t get to wake up from your nightmare…

Lately, with each day that’s gone by, I’ve slipped farther and farther into the abyss of my inflamed brain. I’m in a bona fide PANS relapse—there’s no denying it now.

As it turns out, I’ve had too much faith in my Lyme/co-infections antibiotic protocol. Continue reading “Is This a Nightmare Come True?”

I Lost My Mind… But Haven’t Lost Hope

Every time I think I can’t go on, a thread of hope keeps me alive.

It’s 6:00 on a Friday night, I’m drenched in sweat, sitting on my bed with no pants on, and mumbling nonsense. Tears are running down my face for no clear reason, and I feel outside myself, detached from reality. As my mom peeks into my room to bring medicine, I whisper that everyone hates me, warning that the Universe is out to get me. I have no idea why I’m saying or doing any of this—words are coming from my mouth and I can’t stop them. Continue reading “I Lost My Mind… But Haven’t Lost Hope”

My Narcolepsy Diagnosis Could’ve Killed Me

Three years ago, I wanted nothing more than to be awake.

After a sore throat on my first day of college, I’d become increasingly incapacitated with sleepiness that nothing could relieve. I spent the majority of freshman year asleep, existing in a dream-like state where I never seemed to attain full consciousness. I hoped for a solution to my problem that worked as quickly as it had begun, but nothing prepared me for what my sleep neurologist said instead, on that fateful May afternoon: Continue reading “My Narcolepsy Diagnosis Could’ve Killed Me”