When Getting Better Hurts More Than Staying Sick: The Paradox of Recovery

In the last couple of months, I’ve had a breakthrough in my recovery.  After being mostly couch-bound since January, I’m now able to run.  And my cognitive abilities have improved so much that I just finished a small project.  So many things I’ve hoped for have become reality!

I thought I’d feel nothing but elation if I ever got back to this point, but instead, now that I’m here…

I’ve found a dark side that no one wants to talk about.

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Yesterday, it crystallized as I relayed to my therapist how much progress I’ve made lately…

“You’re telling me all of this,” she said, scanning me up and down.  “But something is still bothering you.”

Before I could figure out what it was, out of nowhere, the emotion overtook me, and I broke down.

“I lost a year of my life!” I sobbed. “I’ve been gone for a year and didn’t know until now.”

I’d been struck by the paradox of encephalitis recovery: when you’re at your worst, you’re too sick and impaired to know it, and in a way everything hurts less. As you get better, you start to see all that you’ve lost, and the grief sets in.  You can only mourn what you know was taken away from you.

Although I was incredibly fortunate to have accomplished far more than I should’ve been able to accomplish over the past year (including finishing college, starting a book, and getting through graduate school applications), everything was so much harder than it would’ve been if I were well.  As a result, I was often miserable if I tried to do anything productive, so I usually avoided any overly demanding work that I could—but that meant there were many things I wanted to do that I didn’t get to do.

On top of this, I had physical fatigue so severe that over-exerting myself could mean multiple days in bed with flu-like symptoms afterwards.  I also lost a certain spark of my personality and unquantifiable aspects of myself.

These days, as I’m getting closer and closer to a “normal” healthy person’s life, I’m so sad that I spent all these months going to appointments, getting treatments, and taking it easy so that my brain could heal from the damage my disease had done to it—rather than working on exciting projects or enjoying myself.  Now that I’m doing those things again, I feel like all of the months when I couldn’t are lost months of life.

On the contrary, last fall, when the catastrophic relapse of my illness which turned me into a shell of a human being began, I felt very little emotion about it—especially as the disease progressed and wreaked more and more havoc upon my brain.

In the most lucid times back then, I was devastated to realize I was sick again, but it was in a distant and abstract way.  Objectively, I saw I couldn’t do my school work anymore, and that I wasn’t all “there”—yet I had no concept of how much of my “self” had been lost. 

In the less-lucid times, my disease made me so numb and detached from everything that I couldn’t possibly feel any grief at all.

But now that I’m better, I feel all of the pain and anger and frustration that I wasn’t capable of feeling when I was ill.  And sometimes, I don’t know how I can handle it.

Exasperation

Some people think that once you cure your encephalitis/PANS, the fight is over.  They think that once the brain inflammation is gone, so are all your problems.  But in many ways, that’s only the beginning of the healing process…

I’m angry that my illness happened to me again.  I’m shocked that such a cruel disease exists.  I’m worried that I’ll never be cured for good.  I’m afraid of losing everything all over in another relapse.  I’m uncertain as to how I can rebuild my life when I’m not sure if I’ll be able to maintain it.

I have nightmares about the whole experience.  I constantly over-analyze every emotion and twitch for fear that they’re symptoms.  I get tense whenever someone coughs and imagine their germs triggering my next flare-up.

So where do I go from here?

There are days when my experience makes me feel like there’s no point to my life, and I wonder why try to do anything at all if I could get sick all over again.

But I’ve realized that to give up is to let this disease win.  It’s bad enough that it happened at all, but how tragic would it be if I recovered yet never truly lived?

So no matter how scared or angry or sad I am, I know I must keep moving forward.  No one knows if I’ll ever have another relapse, but I do know that I’m going to make the most of the amazing life that I’m regaining now.

 


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P. S. Thank you, everyone who shared last week’s post in reply to the Journal of Pediatrics’ paper on PANS.  I’ve been overwhelmed by the response.  I believe that together, we will win this fight for awareness and access to proper treatment!  Thanks for your support.

4 Things I Learned from 4 Years of Blogging… And an Announcement!

What in the world have I done?!  I thought to myself.

A wave of panic ran through me, and my heart began to pound as I stared back at the computer screen.  I couldn’t believe it finally happened.  I’d exposed myself before the whole world—my life story, in front of any eyeballs that landed upon it.  Despite everything in me saying I shouldn’t be sharing so much, I’d just published the first post on this blog.  But there was no turning back now. Continue reading “4 Things I Learned from 4 Years of Blogging… And an Announcement!”

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.  Continue reading “I Woke up in a Body I Didn’t Recognize: Living with Involuntary Movements”

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”

How I Finally Made Peace with My Lyme Diagnosis

“Close your eyes,” the Lyme specialist said. “And hold your arms out straight.”

My body began to jerk while I stood in front of the exam table with my arms extended. As I strained to stop the involuntary movements, I could sense my parents’ dismay even through my eyelids.

Continue reading “How I Finally Made Peace with My Lyme Diagnosis”

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?”

Is This the Hardest Job in the World?

As graduation approached last semester, people constantly asked what was next. What did I want to do with my life? Did I have a job? Would I stay in the city? Was I going to grad school?

Before my PANS relapse in August, I thought I knew all the answers. However, this disease returned not only to attack my brain, but to destroy all my plans.

Continue reading “Is This the Hardest Job in the World?”