I Woke up in a Body I Didn’t Recognize: Living with Involuntary Movements

In June 2014, I lost my body. 

Over seventeen hours, I watched in shock as my body grew a mind of its own, erupting in wild, bizarre movements I couldn’t control.  What started as innocuous twitches in my  legs grew into full-body thrashes and twists and jerks over the course of one day.  And then I realized I couldn’t walk, because every few steps, my legs gave out and sent me collapsing to the floor. 

What was happening, and when would it end?

Doctors had no idea.  They told me they’d never seen anything like this.  They thought it could be a reaction to a medication that would go away on its own.

Four years later, I’m still waiting.

After the June disaster, it took nearly two more months of research, tests, and appointments to discover I had PANS/PANDAS: my body was attacking my brain.  The movements were only a symptom of the inflammation from this autoimmune assault.

I needed drastic medical treatments to reclaim my body.

After a trip to an expert neurologist, I got steroids and IVIG—an infusion of human antibodies that would reset my immune system.  It could take time for it to work, she told me, but I would get better.

Some of the antibodies that should give me back my life

When I went back for my second year of university in the fall of 2014, although the involuntary movements and other symptoms had become more manageable, they rarely stopped.  The tics and chorea, as my doctor had called them, by then had died down to slight jerks and shoulder shrugs and head nodding that only made it look like I was nervous—as opposed to doing a dance, like in the beginning.

For better or worse, I quickly realized I could lessen the movements if I voluntarily fidgeted, such as by tapping my foot or rocking back and forth—which only reinforced people’s assumptions.  But at least those movements were my choice and not from some misfiring neurons I couldn’t control.

Professors and friends, noticing my subtle convulsions and fidgeting, often told me to calm down and “just relax.”  I was too shy and embarrassed to mention it was an autoimmune problem. 

Scootin' Around!
The scooter…

Even worse, for a long time, if I walked more than a few steps, my knees buckled.  In my sophomore year, I had a such a hard time with this that I had to ride a scooter to get around campus.  When I got inside, I’d roll the scooter next to me and use it like a rolling walker.  Everyone thought I was just being a cute hipster—they never would’ve guessed I could barely walk much of the time.

I couldn’t accept what had befallen me.  Using a wheelchair or a proper mobility aid seemed unimaginable, because I couldn’t bare to explain what had happened the summer before.

Many symptoms of my illness, such as the depression, anxiety, cognitive problems, and sleep issues, were completely invisible to everyone else.  Had they been the extent of my disease, I could’ve pretended nothing was wrong, and no one would have been the wiser.

I may have camouflaged my walking problems to some degree, but my chorea and tics sabotaged my desire to look “normal.”  They were a constant sign of my sickness—a hideous scar from one of the worst days of my life.

I’ve been through several periods of remission and relapse since 2014, but having involuntary movements and tics has always been part of my existence to one degree or another since that fateful June morning.  

On the bad days, the excessive movement makes my muscles tired and sore.  I have headaches and neck pain from moving around so much.  I focus so hard on restraining the movements during class that I miss most of the lecture.  I sit down to write, only to get caught in a loop of tics and compulsions   I send objects flying across the room when my whole body starts shaking in a storm of movements.

In those times, I feel like my body is a puppet on strings, and a maniacal monster is tugging on it all day long.

Exasperation

I was sure I’d forgotten what my old body was like, but this month, after another round of IVIG and steroids, I went three weeks without a single twitch.  I got a little taste of what life was like before 2014. 

But how long will the relief last?  Will I ever forget what it’s like to have a body that moves when you wish it wouldn’t?

Over the years, my involuntary movements have reminded me of how I’m different from everyone else.  They’ve been a pain in the butt even when I’m alone.  I’ve had nightmares about that day for years.  And my lack of a sense of control over my body played a role in my eating disorder, too.

It’s taken a long time to come to terms with this new body, but I’ve realized these obvious symptoms aren’t an ugly scar…  They’re a badge of courage attesting to how strong I am for moving forward with life—even if it’s in a different body than the one I lost that day in June.

 


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The Part of PANS/Encephalitis Recovery We Don’t Talk About

For the last eleven years of being sick, time has been my enemy. 

The first sign I was ill was that I started moving in slow-motion—I lost awareness of time passing.  Doctors thought it was late-onset Attention-Deficit Disorder. Instead, as I’d find out eight years later, my immune system was attacking my brain.

Continue reading “The Part of PANS/Encephalitis Recovery We Don’t Talk About”

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. Continue reading “Why I’m Doing Better Than I Think”

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?”