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.

These 3 Myths about PANS Are Ruining Lives: A Response to Misguided Medicine

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In 2012, when I developed an extreme case of Obsessive-Compulsive Disorder overnight, all I wanted was to get better—not to spend the next six years fighting to get treatment for a “controversial” disease.  However, when conventional therapies failed, and I rapidly declined after Strep and mono two years later, only steroids were able to help my severe psychiatric symptoms.  It was then that I realized the truth wasn’t always easy to accept: Continue reading “These 3 Myths about PANS Are Ruining Lives: A Response to Misguided Medicine”

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”

Not About Symptoms: The Truth on PANS/Lyme Recovery

When people talk about PANS and Lyme recovery, I’m frustrated that it’s always in terms of symptoms. For me, it’s never about the symptoms—it’s about coming back from the dead and regaining the parts of me that were lost.

When PANS makes my immune system attack my brain, the physical effects (similar to a brain injury) give me a mental sense of losing who I am and even of being disconnected from reality.

To be honest, I’m vexed that I never seem to adequately describe what it’s like down in the abyss of PANS and Lyme, because it can’t be understood by talking about my symptoms. I want everyone to know that what happens on the inside—not only the visible symptoms—is what ultimately defines recovery for many of us.

What Happens in My Mind During a Flare?

You see, when I have a PANS relapse, as I did starting in August, it’s like someone kidnaps me from my own body. It’s as if they take out everything that makes me myself and leave behind a shell that only looks like me on the outside.

When I’m in a flare, there’s a wall separating me from everyone, as if I walk around in a semi-opaque plastic box that mutes and dims everything I try to perceive.

I’m both a puppet and a spectator of my life, mechanically going through my activities as normally as I can while not being a part of them anymore. My days mean showing up invisible and ignored at my own birthday party while watching everyone celebrate without me.

In those times, my thoughts and reasoning make sense to me, but when I have to interact with the external world, everything is confusing. No one understands what I’m trying to tell them, because I can’t find the right words to crystallize the ideas in my head when I speak. I feel like I’m on a whole other planet from everyone else, and the loneliness and lack of communication is devastating.

Sometimes, I see the ceiling and the floors dancing around, and I know I’m hallucinating, so then I wonder: what else am I seeing and feeling and experiencing that isn’t based in reality? One of the hardest parts of my flares is the sensation that I’m losing my mind while being lucid enough to realize I can’t know how far gone I am—and wondering how much farther I’ll fall.

Yet as awful as the detachment from life and reality is, the worst part is by far the psychiatric torture that results when the brain is inflamed. To have a PANS/PANDAS flare is to be forced to drink the most bitter elixir of despair, rage, and panic stirred together into a brain-crushing poison…

It makes you scream and run and pull at your hair because you’re trapped inside a mind that terrifies you—and there’s no way out. You’re afraid because you feel like a menacing outside force is in control of your body. Your thoughts are turned against you, taunting with hopeless lies and instilling irrational fears and obsessions that consume every moment. It’s so unbearable that you’re not sure how you’ll survive another minute, and you hope the PANS potion will kill you.

So much of what I experience and feel during a flare cannot be quantified objectively or understood by what everyone sees on the outside. People do tell me I look less tormented or more like myself when I get better, but they have no way of knowing the magnitude of the transformation—or the profoundness of suffering from which I’m emerging.

You can’t measure one’s sense of “self” with any blood work or symptom scale—especially if you’re asking a person whose brain and ability to process information has been compromised. By definition, I can’t accurately evaluate how ill I am while still ill. But when I’m better and back to myself, then I know.

And right now, I know.

In October, I began to come back to life after high-dose IV steroids. As I got better, I came to realize more and more how much of my personality had been stolen by this disease. My depression and anxiety were the first to subside, only hours after my first treatment, but some part of me knew I still wasn’t “right”—though I couldn’t quite identify what was wrong with me.

There was more to recovery than not having symptoms…

I hadn’t been able to socialize or do school or enjoy my hobbies, so when those things became not only possible, but natural after two more treatments, that’s when I felt I was truly healing—not just when my depression, anxiety, tics, and cognitive problems began to disappear.

Recovery wasn’t only about having fewer symptoms—it was about having more of my personality and the ability to enjoy and live my life.

Today, three months later, I feel great, but most people would say I’m nowhere near recovered: I’ve recently developed a “neurological limp” where my left foot drags behind me, and both legs give out every few steps when I walk. And I’ve started having complex vocal tics where I involuntarily utter strange (though usually hilarious) phrases against my will.

Obviously, I’m still hoping my Lyme/Bartonella treatment will knock out these remaining problems, but trust me: I’m doing far better than my symptoms might suggest.

These days, I’m enjoying being alive, I’m seeing friends, doing grad school applications, and writing my book (plus intensive outpatient therapy for my eating disorder, but that’s a whole other story).

I might seem bad on the outside, but I feel connected to reality and like I’m part of the world around me—things that were unattainable just a few months ago.  I know better than anyone else how frustrating my lack of motor control is, but I also know it pails in comparison to what I experienced in the depths of PANS.

I’ve said it many times before, and I’ll say it again: recovery is never linear. There are all sorts of ups and downs and twists and turns. I could get discouraged that I continue having serious symptoms, or I can realize that having my personality back is the biggest and best leap forward that I could’ve asked for in my recovery.

It’s not about the symptoms for me.  It’s about coming alive again.