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.

That was four years ago today: June 20, 2014.

IMG_8914

Back then, I was nineteen years old and losing my mind.  I’d caught mono and Strep in my first year of university and then suddenly developed strange neurological problems and severe mental illness.  No one could figure out what caused my bizarre symptoms…  Until my family read about PANS.

The trouble was this disease called PANS was supposed to be pediatric only.  There was so little information on PANS in adults, and I felt like a freak for thinking I had it at my age.  I was lonely and desperate to find something—anything—written by someone with PANS going through what I was, but it didn’t exist.

And that’s when the wild thought occurred to me… What if I were the one to change this?  What if I started my own blog to help the next person facing PANS?

Thus, The Dreaming Panda was born.

Cake
Can you believe it’s my fourth birthday now?!

Truth be told, I’m one of the quietest people you’ll ever meet, so sharing my secrets for four years on what has now become one of the most popular blogs on PANS/PANDAS is more ironic than you’d ever know.  In fact, because of my personality, whenever I log onto my blog I still think to myself every time: What in the world have I done?

In all honesty, The Dreaming Panda was never supposed to last more than a few months, and I never thought more than a few people would read it anyway.  I always assumed I’d blog through the whole recovery process and then logoff someday forever.  I’d leave behind an account of my journey so that perhaps a handful of souls would find some strength in what I wrote. 

But then something happened…

After a couple of months, the emails from other lonely PANS patients and desperate parents came rolling in.  People told me that my writing had touched them and given them hope.  My posts were shared dozens and dozens of times, and I got emails from all over the world. 

Before I knew it, I didn’t just have a growing blog—I had a community of friends.

When I started, I wasn’t sure anyone would connect with a nameless, faceless stranger, yet many of you have poured your hearts out to me, sharing your own secrets and struggles. Moreover, the kind comments, emails, and suggestions you all have sent have meant the world to me, and they’re sometimes the difference between a horrible day and the best day of the week—not to mention that a couple of you were the ones who helped me figure out that I had Lyme.

I’d like to thank you all for everything.

The last four years since my official PANS diagnosis, and the ensuing plethora of treatments, has been far more difficult than anything I could’ve imagined, but blogging has given me a sense of purpose that keeps me going.  There are four things I’ve learned in particular over these last four years, and maybe you’ll find them useful, too:

1) Your life matters, even if you think it doesn’t.

There are times when I’m not sure my life is worth the suffering, but when I think about the people that I’ve apparently touched by sharing my journey, I realize none of it has been in vain.  If I’ve helped just one person get through a dark hour, I feel like I’ve made the world just a little bit better. And then I realize there are more people that I can help, so I keep going.

2) Sharing ourselves helps us heal.

Everyone with PANS, Lyme, mental illness, or any chronic condition is on a difficult road, and I believe that sharing our struggles with each other and walking together is essential for healing.  Our unique journeys can seem isolating, but it’s within this loneliness that we find community.

3) You’re never as alone as you think.

Whenever I hesitate to share a particularly personal post for fear that no one else will understand, I’m always stunned that these often turn out to be the posts others relate to the most.  If you think you’re the only one who feels a certain way about something… You’re probably wrong.

4) Telling your story is more than just catharticit can help others, too.

Although I’m going to stay anonymous, sharing my experiences through writing has shown me that opening up just a little bit may not only improve one’s own life, but perhaps the lives of others.  Genuineness is the foundation for successful human connectionseven anonymous ones.

So what’s next for this blog?

Don’t worryI’ve decided to keep it going at least until I’m well, like I’ve always said I would.  However, I’ll probably keep posting only every two weeks from now on, and that’s because I’ve started something even bigger than this blog:

I’m writing a book!!!

Yes, I’ve tossed around the idea of a book every year, but now it’s finally happening for real.

Books-small

I’m writing an entertaining guidebook for college students with chronic illnesses and disabilities, peppered with memoirs of both my successful moments and my hilariously cringe-worthy failures to apply my own advice.  I somehow graduated with Highest Honors while fighting PANS and Lyme, and now I want to help others succeed, too.

With words of wisdom on everything from studying with brain fog, to managing flare-ups, to not being “that roommate,” my hope is that my book will inspire and encourage anyone facing illness, disability, or mental health conditions while earning a degree.

And of course, I hope that talking about PANS/Lyme in a (hopefully successful) book will increase awareness and lead to more people getting the help they need.

My manuscript is about a quarter complete, and my goal is to finish by the end of the year.  I’m working on my formal book proposal and searching for publishers right now.  I’d love to see it release next year or in 2020, but I’m willing to wait to find the best match.

In the meantime…

  • I’m planning to keep this blog going.
  • I’m looking for guest-posting opportunities and planning to submit more posts to The Mighty and other sites.
  • I’m slowly writing a magazine article about my journey through PANS/Lyme in the hopes of raising greater awareness.  I’ll submit to a few and see what happens.  I’ve never seen a first-person account of PANS published, and it’s time to change that.
  • I’m starting grad school—at least, if I stay well enough.  This will be my main priority, but I want to keep up these projects so I have another outlet.
  • Mainly, I’m focusing on recovering.  I have days when I’m 95% better PANS-wise, and I can hardly believe how well my brain functions.  I’m now the best I’ve been since last fall’s catastrophic relapse, but I continue to struggle a great deal with fatigue/post-exertion malaise. I’ve started seeing an integrative doctor, so I’m hoping things will get even better soon.

So once again, I’d like to thank all of you for coming along for the ride.

I’m still not sure what in the world all of this writing will mean for my life’s trajectory, because I actually do have a whole other life outside of PANS, Lyme, and The Dreaming Panda.  (Inevitably, you’ll soon learn more about it if you read my book.)  I don’t have all the answers right now, but I know I’m on the right path.  Thanks for walking alongside me.


Follow me:

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.

 


Follow me:

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?”

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.