Why I Don’t Care What You Call Whatever’s Wrong with My Brain

It was a typical Sunday morning a few weeks ago when it happened. My mom was cooking me an omelet, and dad was reading the paper. I was rummaging through the cupboard to get some honey to drizzle on a banana when I heard it:

“CLAW.” And then there was whispering in a female voice I couldn’t make out, which I somehow knew was about me.

“What’d you say, mom?”

“I didn’t say anything.”

I paused for a moment. “Did you say something, dad?”

He shook his head.

“So neither of you heard it?”

“Heard what?”

A chill ran down my spine as I suddenly realized what just happened: Continue reading “Why I Don’t Care What You Call Whatever’s Wrong with My Brain”

Welcome, and Thank You!

With all of the new followers joining my blog and social media accounts, I’m going to take this post to welcome you, say thank you, and talk about what’s next…

This month, over 4200 of you read my stories, and as the shy person that I am in “real life,” this is unfathomable. Those who read my extreme OCD story from the other week now know a part of my life that none of my “real-life” friends know—at least, not in such detail.

But what this means is that awareness about Pure-O/Scrupulosity OCD and PANS/PANDAS in adults is spreading, and even my bashful self is incredibly grateful to be a part of that—so, truly, thank you for sharing my posts.

Continue reading “Welcome, and Thank You!”

The Kind of OCD We Need to Talk About

For six years, I kept a secret that I was determined to take to my grave. I pretended I wasn’t constantly afraid. I made excuses when asked about my unusual behaviors. I was so hell-bent on avoiding being found out that I did everything I could to fool every psychologist, therapist, and doctor I encountered.

And the whole disaster started with one thought.

When I was eleven, while lying in bed, something along the lines of “F– G*d” popped into my brain. As the good-girl church acolyte that I was, I felt horrified. What did it mean that a sacrilegious thought like that could appear in my mind? I felt like I had to do everything I could to keep it from coming back or else that meant I was a bad person. I already felt incredibly guilty that it had happened even one time.

But as the days went on, the more I tried to resist thinking that thought again, the more often it happened and the more it evolved and mutated into increasingly offensive thoughts until they had some of the most explicit, blasphemous, sexual, and violent content imaginable. Everything I didn’t want to think, I ended up thinking. I fell into complete and utter despair. Continue reading “The Kind of OCD We Need to Talk About”

Why Ignoring Adults with PANS Hurts Everybody

After twenty years in and out of group homes, psychiatric hospitals, and residential treatment centers, at twenty-nine, Jo* has never been stable enough to have a job. Jo lives with his parents between hospitalizations. Despite being incredibly smart, Jo barely finished high school due to several learning disabilities. Jo’s frequent panic attacks render him unable to drive. Jo almost died of cardiac arrest from anorexia and has attempted suicide multiple times. Continue reading “Why Ignoring Adults with PANS Hurts Everybody”

Why These Myths About Suicide Are So Harmful

[Trigger warning: this post contains discussions of personal experiences with suicidal thoughts and misconceptions. If you’re in an emergency, please call the National Suicide Lifeline at 800-273-8255 or dial 911.]

 

No one needs to know, I told myself as I sat frozen, staring at my phone. I don’t need to call him, I tried to convince myself. I remembered how I promised I would if the thoughts came back, yet as soon as I pulled up my doctor’s number, I set my phone back down and started talking myself out of the call once more. Continue reading “Why These Myths About Suicide Are So Harmful”

Could This Antibody Be Stealing My Life?

Why would this happen? How could I get worse while getting treatment?

Years ago when I started this blog, every time I had a symptom flare-up, I’d ask myself these questions over and over again sure that if I thought about them hard enough it would all make sense.

Unfortunately, when you have an illness which science has only recently begun to understand, you rarely get the satisfaction of knowing why you’ve gotten sick and what exactly will work to get you better. Sure, well-established, proven guidelines for diagnosing and treating PANS exist (though they didn’t when I started), but all too often, I relapsed without knowing why and had no objective test to prove how sick I was; I’d lose my entire personality, but the autoimmune markers you might expect in someone suffering from brain inflammation never showed up.

Continue reading “Could This Antibody Be Stealing My Life?”

To Anyone Whose Illness or Disability Makes School a Struggle…

It was two weeks until the start of middle school when my mom and I walked into the building and knew right away that something wasn’t right.  The walls were freshly painted, the windows cleaned, and the floors polished, but something neither of us could put a finger on said to look a little closer.  With inexplicable conviction, as soon as we’d dropped off my paperwork and gotten back into the car, we reached the same conclusion: I couldn’t go there.

Two weeks later, I began my first day of homeschool. 

Watching the bus drive by my house without me was a strange feeling.  I was sad to no longer see my best friend every day, and I wondered if I was making a huge mistake after all.  But thinking about impossibly long school days spent with my bullies and long homework assignments every evening at home made me grateful for the choice my family had made. 

Thanks to homeschool, I’d be able to get a solid education without being overlooked or bullied, and I’d have more time to continue my training schedule as a competitive athlete.  I had always enjoyed learning, and I couldn’t wait to get started with homeschool—I was so pleased to be skipping an entire grade.

Little did I know, I had (most likely) contracted Lyme and/or had a bout of Strep that summer.  I soon traded sports for doctor appointments.  The infections not only led to profound exhaustion and swollen joints a few weeks into the school year, but months later, I suddenly developed multiple mental illnesses and learning disabilities that had never affected me before.  And it would be eight years before we figured out what happened.

“Mommy, I can’t read this,” I said one day early on, pushing my history textbook away from me.  I—the one who blasted through the entire Harry Potter series within a few months and once plowed through astronomy texts for fun—I suddenly felt like books were in a foreign language I barely knew.

“What do you mean?” She came and sat next to me as my eyes began to tear up.

“It’s taking too long.  Look, I’ve only read a page the whole time you were downstairs.”

“Would it help if we read this together?”

“Shouldn’t I do this by myself?”

“It’s okay,” she said, patting my back.  “I know you’ve been feeling poorly lately,” She picked up the textbook and began to read it out-loud.

Indeed, for much of my homeschool journey, I had to have all of my textbooks read aloud (or in audio book format), and someone had to sit near me all day to keep me on task.  And ironically, anytime my homeschool curriculum called for an essay assignment, I would have a meltdown because I couldn’t focus my thoughts and put them onto paper.  Plus, every day it had already taken me two or three hours to get up and walk into the “school room” next to my bedroom due to fatigue, OCD, and ADD. 

Suffice it to say that college seemed utterly unattainable when I was in middle school and so sick with PANS and Lyme and all the resulting mental health problems.

But eleven years later, somehow, I graduated from college with a Bachelor’s of Science and a 3.95 GPA.  I turned what I once considered my weaknesses into my strengths, and I earned recognition in my field during my undergraduate career.

With a new school year upon us, there’s something I want to tell anyone whose illness or disability has made you pursue an education in a non-traditional way:

You’re not inferior just because you have to do school differently from an arbitrary norm. 

Just because you have to take a road less-traveled doesn’t mean you won’t get to your educational destination.

Before college, I spent too much of my adolescence feeling less-than because I couldn’t get on the bus and go to a full day of school like everyone else.  I felt like I was defective because I struggled with everyday tasks that others took for granted.  I was in awe of my friends who took multiple AP and Honor’s classes at the same time in high school—why was it so hard for me to take only two easy classes at community college with almost no other schoolwork?

Indeed, eight and a half years passed from the time I took my first class at that junior college to the time I had my bachelor’s degree.  But guess what?  I got the same degree as everyone else in my program, and no one cares that it took me longer to get it.

So how did I do it?

People often ask how in the world I did college with the challenges I’ve faced, and a huge part of it was transferring those credits from community college, which meant I could take fewer classes at once at my university than the typical student. Also important was having supportive parents and friends who were there for me, and having professors who believed in me and worked with me in the tough times.

Another part was finding strategies that let me learn material quickly and spend minimal time studying—strategies that came from years of experience and experimentation to get around brain fog and other cognitive problemsAlso critical was learning the fine art of giving professors exactly what they asked for on assignments and papers and nothing the slightest bit more. 

There’s so much to say about how I did it that I’m writing a guidebook/memoir on doing college with chronic illness and disability, which covers everything I figured out, from studying through brain fog, to managing symptom flare-ups away from home, to having a social life with chronic illness, to not being “that roommate.”

If I keep writing at my current pace, my manuscript should be finished by this Christmas.  (Some of this post may or may not have been lifted from it. 😁)

But there’s one big lesson I’ve learned the hard way:  Don’t sacrifice your health in order to do an education in a certain way—and don’t sacrifice it in order to get straight A’s like I sometimes did. (As the saying goes, C’s and D’s make degrees!) It’s good to stay as engaged with life as possible while sick, but it’s not good to overdo it.  I say all of this not as flippant platitudes, but as products of a lot of self-reflection and my recent decision:

I’ve dropped out of grad school.

Just like watching the bus leave without me on my first day of homeschool, it’s an unnerving feeling seeing all my friends posting back-to-school pictures on social media right now.  There are moments when I wonder if I’ve made a mistake, and moments when I chide myself for leaving without at least the master’s degree to show.

But what good is a degree if pursuing it will make you too sick to use it? 

PANS mostly seems like a thing of the past by now, but unfortunately, this summer, I relapsed terribly with my ME/CFS (or is it Lyme?).  My doctors said if I tried to push through another year of school right now, I’d prolong my recovery, if not get permanently worse.  I’ve improved an unbelievable amount from a month ago, but it’s not worth risking my entire future just to finish my degree “on-time.”

To be honest, I’m so incredibly relieved and maybe even happy about my decision to take some time off from grad school.  I hope all of you can give yourselves permission to do what’s best for your health this school year.

As it is, my college degree has helped me obtain a remote job in my field, so master’s degree or no master’s, I consider where I am a victory—while in the thick of PANS and my various psychiatric issues, it wasn’t always clear something like this would be possible. I plan to resume grad school when I get a little stronger, but just like middle school, high school, and college, it’s going to be on my own timetable in my own way.  No one will care if I finish this degree a year or two later because I got sick.

So readers, I hope that by sharing about my unconventional educational journey, any one of you in similar circumstances will realize there’s no shame in doing school in your own way at your own pace.  Lots of people (not just people with illnesses or disabilities) are up against various obstacles that impact their education—we’re far from the only ones who have to take our time or forge our own paths to reach our destinations.

So to anyone feeling bad about taking a break from school or doing it differently from others, you are not a failure.  You are not broken.  You are not incapable.  You are wise and brave for putting your wellbeing above others’ expectations. 

Hang in there.

5 Things I Would’ve Told Myself When Diagnosed with PANS

After eight years of a mysterious illness no one could figure out, one July morning in 2014, a neurologist finally cracked the code: I had PANS.  My body was attacking part of my brain, leading to all sorts of bizarre symptoms.

But at the same time that she shed a light onto my case, the new diagnosis plunged my whole family into a darkness we couldn’t have imagined.

Yes, we had an answer, but we’d also just opened a pandora’s box of questions without knowing it. 

Continue reading “5 Things I Would’ve Told Myself When Diagnosed with PANS”