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.

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”

I Don’t Know Anymore

Well, after dreading it and hoping and praying it wouldn’t happen again, I’ve just had another bad flare.

On my way to class last week, I overheard someone say she had Strep throat.

No. I can’t flare again, I thought to myself. It’s not going to happen. I’m still on antibiotics. I’ve had two IVIGs. I should have plenty of good antibodies if I’m exposed. I’ll be fine…

But then, when I got to class and saw one of my lab mates who hadn’t been around in a few days, I asked where he’d been—and immediately wished I hadn’t:

“Oh, I had strep throat. It was a really bad one!” Continue reading “I Don’t Know Anymore”

My Last Piece of Freedom

Last summer, over the course of a few hours, I suddenly became unable to walk due to an autoimmune attack in my brain. If I tried to go from my living room to the kitchen, I fell multiple times because my legs would suddenly give out.

In one moment of insight during that horrendous time when I had not only lost the ability to walk but had essentially lost my mind, I said to myself, I’m going to run a marathon someday and overcome this. And I’m going to beat my best 5k time from eight years ago within the next year.

It was truly a crazy idea. Maybe I still wasn’t in my right mind when I came up with that…

Continue reading “My Last Piece of Freedom”

My First “Normal” Summer?

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This week, I have wonderful news… Instead of moving home for the summer like I’d planned, I’ve decided to remain at school to take classes and work.

While this may sound like a “normal” summer for an almost-20-year-old, for me, it’s a huge victory. Not too long ago, I hated everything and wanted nothing more than to go home and spend my summer lying on the couch or in bed (just like last summer). But now, I want to keep pursuing my dreams in this city—dreams that I’d pushed to the back burner for far too long because of my illness.

Continue reading “My First “Normal” Summer?”

IVIG #2: I’m Finally Aware

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I just finished my second, and hopefully last, IVIG treatment!

Recently, I’d been feeling like I’d made no progress with any of my symptoms after my first IVIG.  But strangely, it was the process of going back for another IVIG that showed me this was simply untrue.

When I had the first IVIG in August, if I got out of the chair to stand up and stretch my legs, I started doing a wild choreiform movement dance. I couldn’t even look at my doctor to talk to her because I was moving so much. I had to hold onto the IV bag pole to keep from falling down when I tried to walk down the hall to the bathroom.

This time, I hardly had any movements, and the ones I did have were barely noticeable to anyone besides me—except for when I took one spill in the hallway… Continue reading “IVIG #2: I’m Finally Aware”

Am I Better Yet?

Ever since I started treatment this summer, I’ve found myself constantly asking, “Am I better yet?”

When I got IVIG, I’d hoped maybe I would start getting better within a few weeks. Whenever I had a good day, I started to think I was getting better. But then the symptoms would come back, and I’d be disappointed. I’d been told it could take me up to a year to get back to 100%, but I hoped it would be sooner. Wouldn’t you?

Six months later, I’m still playing the am-I-better-yet game, and the answer is still no. Certainly, I’m “better” than I was in a lot of ways, but I’m nowhere near where I want to be. I was doing really well, but now that I’m finding out where I am with less of the anti-inflammatory and immunosuppresent qualities of the steroids, I really don’t like what I’m seeing.

Continue reading “Am I Better Yet?”