A Confession… And Why I Need Your Advice

For the last few months, every time it gets close to the end of the month, I tell myself I’m going to have a post ready before the wee hours of the morning of the final day. I tell myself I need to sit down and come up with something to say so I don’t have to stay up late trying to squeeze out some words.

Yet every month so far, including tonight, it’s gotten to be the last day of the month, and I’m scrambling to post something before midnight so as not to break a seven-year streak of posting on this blog every month.

I could have stopped blogging years ago. When I started writing on here in 2014 around the time I was diagnosed with PANS, it was never supposed to last more than a few months. I figured I would stop writing when I got better, and surely I was going to be better in a few months, and then go on as if nothing had ever happened… Right? Wrong, very wrong. As it turns out, you don’t just undue eight years of brain inflammation with a single round of IVIG. Healing a brain is often a long and complicated process.

But eventually I reached a point where I stopped having serious flare-ups. It only took four years, three rounds of high-dose IVIG, eight rounds of low-dose IVIG, ten rounds of high-dose IV steroids, a tonsillectomy, intensive outpatient therapy, psych meds, and more perseverance than I knew I had!

Now it’s been three years since I had to break out the Prednisone to deal with a flare. I rarely get “micro flares” that cause a few old symptoms, but I manage with Alleve, antibiotics, and/or anti-histamines depending on what set it off. And then I go on as if it never happened. Then I go back to work the next day and carry on with life as usual… Sometimes it’s staggering to think it was only four years ago when I had brain inflammation so intense that I had to do nine rounds of IV steroids to stop the autoimmune attack––and then spent eight months healing from the brain damage.

As I go about my life working in my chosen field now, it all seems like a lifetime ago. I used to wonder if I would ever feel like myself again after my brain healed, and I can finally say that I do. And maybe that’s why it can be so difficult to grasp anymore the perpetual trauma of PANS that I once existed in for all those years.

So what about this blog?

All of this is to say that I’m feeling more and more distance between me and PANS, and that’s a really good thing. Yet here I am, the author of the #1 PANS Blog on the web. I have a platform that helps people. I still get more messages than I can answer efficiently, many from readers thanking me for having this blog. So every month, I log back on to post in the hopes I can come up with something I haven’t already said in the 150,000 words written on this blog so far.

And today, I think I’ve finally failed to have anything new to say. So I’m finally confessing the writer’s block I’ve had for quite some time now.

However, calling it “writer’s block” is ironic when I have a 93,000-word manuscript sitting on the table downstairs, most of which I wrote in the last year. Yes, I recently completed my self-help guide/memoir on succeeding in college with a chronic illness, and the plan is to release it in late spring of 2022! There is no book like it on the market, and I think it will offer some much-needed hope to everyone out there with an illness or disability that makes them question if they can get through college or not.

I won’t say anything else about my book for now, but I mention it because I might only share a few more posts on this blog, unless I can come up with more to say that I haven’t said already. I plan to continue posting on here at least once a month until the book comes out, but then I will probably switch to a different platform after that. I may occasionally post something on here once in a while after that point, though, but it may not be every month like it is now. Basically, this blog may be winding down, but my writing career and advocacy work have only just begun. It’s actually a really exciting time, and I hope this book will help bring neuroimmune disorders more into the mainstream.

In the meantime, I need your input…

With possibly only a few posts remaining on here, I want to make them count. I’d like to know:

What keeps you reading my blog after all these years? And what would you like to see me talk about next?

I want to thank all of you who have been reading my blog over the years for all of your support. It has meant so much and sometimes been the main thing keeping me fighting the good fight. Without you all, this book would never have happened. So thank you, from the bottom of my heart. I hope you will continue with me through the next part of my writing journey both on this blog and in my book!

Be sure to let me know what you want me to write about next in the comments…

Grad School Round 2: Conquering the Ghosts of PANS Past

A few months ago, I made a scary last-minute decision: I was going to re-apply to grad school, this time at “State University,” close to home. And today, I successfully got through my first class!

As many of you know, I did a year of grad school at a competitive program out of state before Myalgic E waltzed into my life and forced me to abandon my education, at least for a while. But this spring, after a lot of improvement due to a round of Rituxan, it started to bother me that I hadn’t finished school. I realized after two years away, it was finally realistic to go back, at least part-time.

But what I didn’t realize was the reality of going back to school. I didn’t realize how different it would feel after being in industry for two years and being three years older than when I started. But even more, I didn’t realize how compromised my brain is in more ways than one.

Like many schools, mine required entrance exams, which were online this year. I petitioned to be exempt since I already had a year of grad school behind me, but the school came back and said they would use a shortened version to determine if one of my classes would transfer or not. So there I was, with a week until the exam deadline, trying to relearn material I hadn’t thought about in four years, since undergrad.

But no sooner had I got out my old class notes from undergrad that the ghosts of PANS past came back to haunt me.

Homework

If you’re new to my blog, then you don’t know the disaster that was the last semester of college. My encephalitis started to come back the week before classes started, and it just got worse and worse from there. My brain was so inflamed that it took multiple weeks of IV steroids to come out of it! Rather than reinvent the wheel, I’ll share a paraphrased excerpt from the book I wrote about succeeding in college with a chronic illness that gives a tiny sense of why that semester was so hard:

Although I had been physically in class every day that semester, it was truly as if I had been gone for the first two months. After I ‘returned,’ I had to re-learn all the material, starting from square one in some areas. My professors had graciously removed all deadlines of assignments for the rest of the semester when I told them what was going on, and that’s the only reason I didn’t outright fail.

However, my ability to read, stay focused, and figure out how to break down tasks into smaller, manageable steps were always some of the last aspects to improve after an encephalitis relapse. Getting through the rest of that semester would mean scaling a mountain with two broken legs and two badly sprained arms.

To this day, I have nightmares that I didn’t finish catching up on all of the assignments I missed in that last semester. I have dreams where a professor informs me that I didn’t actually graduate, and I have to go back and take the hardest class of my major again. For a long time, I couldn’t believe I had really pulled it off, but I also did my very best to forget what that semester was like as soon as I finished writing my (yet to be published) book.

But the other week as I studied, it was impossible to forget. There in the lines of my class notebook from that semester, you could see plainly the decline in my handwriting from the first day of class to right before I got steroids. (A decline in handwriting abilities is a hallmark symptom of Basal Ganglia Encephalits, aka PANS.) And then you could tell when I got the steroids, because then my handwriting was neater than ever. It was eerie in an intimate way that re-reading my blog never has been.

Again, I tried not to dwell on that semester too much as I studied the material in the notebook. But a couple of days later, when I went to take the exam, it came back to me yet again.

Before I even started the test, I was shaking all over, and my heart was starting to pound. I told myself I would do fine because of how hard I had studied, but it was no use. As soon as I opened the test, I completely choked and couldn’t remember anything. Then I was in a true panic attack, having a meltdown all over again, just like I might have when my brain was inflamed.

Test-taking anxiety (at least to that degree) has never been something I struggled with. This was a trauma response. This was my body remembering all of the pent up fight-or-flight that I constantly lived in while facing PANS and trying to get through college. This was remembering the times when I was fighting to use every once of strength just to show up to class. This was feeling the pressure again of being in one of the hardest majors of the university while also horribly ill.

Time and time again, even three years on from the last time I felt like a PANS patient, I realize how traumatic the whole thing really was. I didn’t realize that at the time because I was just trying to get through, and my brain was too inflamed to understand. It was after I started to improve that I realized something very terrible had happened to me, and now I was going to be spending who knows how long trying to get back all of my “self.” PANS is an invisible trauma that’s impossible to understand until you live it.

It’s no wonder that so many things related to that time in my life will still evoke a panic attack.

Nevertheless, I was able to calm down enough to get through the test. And I did well enough for them to accept my credits!

Understandably, I was nervous about what other school-related triggers I might have, but I showed up to class this morning and didn’t panic. Actually, I enjoyed being in class again. Showing up on Zoom isn’t something I ever had to do in college, so maybe it is different enough not to trigger me. Maybe if I get through this semester, I’ll be able to go in-person eventually without panicking, either. It’s okay if you have to slowly work up to doing whatever it is you want to do. It’s okay that I have to go only online and take only one class at once.

There’s a lot messed up in the world right now, but I just wanted to share this victory of coming back to grad school after M.E. tried to stop me, and despite my PTSD. I don’t want to say “if I can do it, anyone can,” because we’re all unique and that’s not true. You can do things I can’t and vice versa. But I hope that maybe knowing that I have been able to go back to school after all that I’ve been through can be a ray of hope for anyone struggling or worrying about doing so themselves right now.

Expectations vs. Reality: Why “Different” Doesn’t Mean Worse

A few weeks ago, I became the last of the adult kids in the house. And now it’s just me and my parents. Just me, the disabled and sick 26 year-old, and my parents, whose almost-retirement years I can’t help but feel guilty for fifth-wheeling sometimes.

My friends are getting married and having babies. My friends are working jobs full-time, some of which are dream jobs and some of which they hate. My friends can do “normal” things, like maintain their own apartments, go to the store, and go on hikes in their free time. And then there’s me. I live with family and haven’t been able to go on a proper walk in over two years. I just lost an entire week of work because I was in another ME crash that left me too sick and weak to sit up. I might like to find a partner someday, but if I’m honest, I worry no one will want me if I stay this sick.

Every time I have a bad ME crash, all of my worst fears about my future and deepest insecurities about the present come rushing back. In the hours when I’m in pain all over my body, completely exhausted, and hooked up to an IV, I start to think maybe this is all my life will ever be. I forget everything I’ve accomplished and everything I am apart from my illness––and I am so many things besides sick.

Continue reading “Expectations vs. Reality: Why “Different” Doesn’t Mean Worse”

When What You Fear Most Is the Right Decision…

I’ve done something scary: I re-applied to grad school. 

Two years ago, I left grad school not completely by choice, but out of necessity when I was diagnosed with Myalgic Encephalomyelitis. I’d spent that year in grad school living in a completely new part of the country by myself. I’d had a great assistantship. It was all very hard at times, but I learned so much in that year.

So that summer, to become so ill was shocking and devastating. It didn’t compute that I could no longer drive, put away groceries, walk to the mailbox, or even load the dishwasher by myself anymore. There are no words to describe how devastating it feels to become fully dependent on your family at age 24, after having lived by yourself for five years. 

In the physical and emotional state M.E. put me in, there was absolutely no way I could have safely resumed school.

While in the thick of PANS, I had always pushed myself to go back to college every semester even in the worst of times, even when a lot of me thought I couldn’t possibly make it. I had always powered through, consoling myself by knowing that staying in school meant I was still moving forward in life. College had been my anchor to reality and normalcy when I couldn’t otherwise recognize myself or my life due to the brain inflammation. The structured nature of college kept me going.

But this time, it was different. 

While in the worst of PANS in college (except when it showed up as anorexia), I had retained my physical stamina. In fact, I could run ten miles at times when I struggled to put together a sentence. But now that I had Myalgic E. instead, I was so frail that I couldn’t even do five sit-ups without getting ill for a week afterwards. 

My doctor warned that I would permanently worsen my condition if I tried to go back to grad school. I hadn’t wanted to hear it because I thought I could hang onto grad school the way I hung onto college. 

But one morning, it finally all came to a head when it took me four hours to get out of bed because all I could think about was how overwhelming and impossible it seemed to go back to grad school in three weeks. My mom finally came and dragged me downstairs, but I just started sobbing.

“I can’t go back,” I moaned. “I don’t think I can do it.”

“Then don’t.”

I paused, contemplating such a profound statement. But how could I not go back after I’d aced college even with brain inflammation? How could I give up now? And yet I knew she was right, and I knew how relieved I was to think about not going back.

“Maybe I should just transfer to [state university] next semester so I can keep living here,” I said, almost joking.

“That’s actually a good idea.”

I paused, realizing that transferring in grad school, though unorthodox, was a real possibility. “But how could I go there after I’ve gone to [first grad school]?” I countered. “It won’t be the same.”

“Do you want it to be the same? Do you want to be so depressed about going back that it takes you four hours to get out of bed?”

“But,” I started, staring at the floor. “I worked so hard to get there. For years, I tried to do everything right so I could get in.”

“I know, and you earned it. But [state university] is a great school, too,” Mom reminded me. “I think you know you’d have a great experience there––after you’re well enough.”

That afternoon, I finally accepted my circumstances and informed my university that I would not be returning due to my illness.

The thought of transferring to the state school someday and having more family support during school buoyed me. The idea helped me see that my original grad school didn’t hold the only keys to my future.

After I left grad school, I learned that sometimes the thing you fear and dread the most is exactly what you need to do. 

Over the last two years, there have definitely been plenty of times when I’ve felt sad about leaving grad school unexpectedly and not finishing my degree. However, not being in school opened up lots of professional opportunities I would have had to turn down if I had stayed in grad school. In my time away from school, I feel like I’ve found myself like never before. I work with a start-up part-time and freelance on the side as well, and I love being in industry as opposed to academia.

So why go back?

The way I see it, if I want to make the year of grad school I already did count the most, then I need to finish the master’s degree. I worked my butt off that year, so I want to earn that degree. 

Half a master’s degree doesn’t earn you much. I happened to be in the right place at the right time (and with the right expertise due to undergrad) to get in with this company, but usually, the top people in my field have graduate degrees. Every day, I’m working with people who all have more degrees than I do. I have wonderful colleagues who value me despite my lack of graduate degrees, but down the road, I will have more options with at least a master’s degree.

Moreover, there are some additional training and research opportunities that are unique to academia. It will be great to have the chance to learn more and get even better at what I do.

Why do I think I’m well enough for grad school?

I decided against applying for 2020-21 because I felt like my health wasn’t where I wanted it to be yet. But I’m optimistic about 2021-22 (and beyond).

Recently, I’ve made a lot of progress in my health. My resting heart rate has dropped to the low 70s compared to the 100s a year ago. The other day, I walked a quarter mile and didn’t crash, whereas the same walk a year ago caused a crash for three weeks. Mentally, I’m 70-100% every day. I regularly work for three or four hours without triggering a flare up. I’ve even been able to dramatically reduce two of my three psychotropic medications! 

I am feeling hopeful and starting to dare to imagine being able to do things like go for a walk every day or do my own housework. I believe I can go to grad school part-time without causing harm.

This time will also be different because I can keep living at home. Continuing to have my family’s support will make a huge difference. 

Taking my own advice to heart…

Something I advise in my upcoming self-help memoir on college and chronic illness is that there’s no such thing as the best school in the country. The best school is where you can thrive both as a person and academically. And for any given person, that usually won’t be whatever school U.S. News has ranked the highest this year. 

So now I’m practicing what I preach in realizing that this school really is a better place for me to be at this time.

I struggled at my old school sometimes because everyone was just as good or better than me. On the one hand, it was stimulating to be surrounded by such smart people, but on the other, I would often compare myself and beat myself up for not being the best—and I never was the best.

But this new school has great faculty and is well-respected within my field, even though the name is not as flashy as where I was before. I will always be taken seriously with a degree from there, and I think I may get more attention in the new program. 

Final words of wisdom

April is often when people find out which colleges or grad schools they were accepted to. If you read my blog, you probably have a chronic illness or know someone who does. So I would like to encourage all of you to not be afraid to choose the school where you can be your best self, including health-wise and as a whole person. And also don’t be afraid to go to community college for a year or two so you can have some support from your family and minimize debt (I went myself!).

Don’t go somewhere only because it seems impressive if there’s somewhere else that will be a better fit for you. School is what you make out of it––the opportunities you find and create, the people you meet, and how you spend your time at school. What others think about the name of the school is far less important.

It might seem really scary to take some time off school to work on your health or turn down admission to a particular school, but sometimes it really is the scariest thing that ends up being the right decision…

My 6-Year Blogversary, My Greatest Hope, & What’s Next

Ten days ago, on my actual blogversary, I had a nice 6-year anniversary post planned—the usual reflection on how I started blogging and how much it means to me. And I still stand by my belief that making this website and chronicling my journey through neuroimmune conditions and their psychiatric consequences has been one of the most meaningful things I’ve ever done.

But I somehow could not bring this post in for a landing, which tends to happen when I feel like I have to post something rather than feeling inspired. So I stepped back and thought about what was going on. And now it’s time to be honest… Continue reading “My 6-Year Blogversary, My Greatest Hope, & What’s Next”

Remember M.E.: Why I’m Missing Today

Today was Graduation Day for my master’s degree…

But I’m not graduating.

And I don’t mean that I’m not getting an in-person ceremony, the same as the rest of the class of 2020. I mean that I’m not graduating because my illness forced me to leave grad school halfway through a degree.

For years, I had planned on going to grad school, getting a PhD, and then becoming a professor. I liked school and liked the tutoring job I had in college, so I thought teaching and researching at a university was what I wanted. Continue reading “Remember M.E.: Why I’m Missing Today”

Dear Sick, Scared 2015 Me… A Letter to Someone Whose Illness Uprooted Their Life

Dear 2015 me,

I know you feel like a stranger in your own life right now while you’re the sickest you’ve ever been with PANS. I know you’re scared, lonely, and unsure if there will ever be anything more to your life than this illness that attacked your brain and kidnapped you from your own body. I know you feel invisible because of all the hours you’re trapped in your room and all the days when you’re trapped in a mind you no longer recognize. You feel unseen because no one knows how much it takes for you to accomplish what others take for granted.

Continue reading “Dear Sick, Scared 2015 Me… A Letter to Someone Whose Illness Uprooted Their 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.

My 5-Year Blogversary… And What Might Be Next

Five years ago today, I made a decision that would change my life: I published my first post on this blog.

I didn’t tell anyone—not even my best friend or my family.  It was my little secret project that I never intended to keep up for more than a few months—and yet, here we are in 2019.

Back then, I was a castaway on a desert island of illness, tossing out that first post like a message in a bottle—I didn’t know if anyone would ever see it, but nonetheless I felt compelled to write.  After all, it was one of the few things that brought me peace from the depression that was engulfing me.

Continue reading “My 5-Year Blogversary… And What Might Be Next”

Facing The What-If’s of Chronic Illness: Why Do Grad School While Sick?

Last month, after finishing my first semester of grad school, the dread of having to come back in January to do it all over again drowned out any sense of accomplishment.  Although I liked my colleagues, the truth is that I was miserable so much of that fall.  And until now, I didn’t know why.

Continue reading “Facing The What-If’s of Chronic Illness: Why Do Grad School While Sick?”