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…

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”

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?”

How I Tackle Grad School with Cognitive Problems from PANS

“How’s grad school going?” my friend from home asked.

“I mean—I’m glad I’m trying it,” I stammered, going on about a few highlights.

“But do you like it?” she pressed.

The truth is that I’d been afraid to ask myself this very question, because I was afraid to learn the answer….

But first, how is grad school going?

Continue reading “How I Tackle Grad School with Cognitive Problems from PANS”

Why Failing in Grad School Proves I’m Doing Great

“You need to get yourself together,” my professor warned, staring at me with utmost concern.  “You have to do better than this if you want a career.”

The words stung and burned into the darkest recesses of my mind, not because I was taken aback, but because I knew on some level they were true.  They were the doubts that nearly kept me from applying to grad school in the first place, and the soundtrack to every moment when I’ve wondered if I should even be in this field.

Maybe I’d made a huge mistake after all.

When people ask how I’m doing lately, I have no idea what to say.  On the one hand, I’m successfully living on my own again, and my PANS symptoms are 95% better.  On the other, I’m easily the least effective graduate student in my group.

I feel like I’m the runt of the litter, when my professors thought they were hiring a pure-bred show dog.  My undergraduate mentors apparently wrote glowing recommendation letters, but now that I’m here, I’m barely meeting these new professors’ demands.

After that conversation with my professor, I was utterly deflated.  I’d been on the verge of a breakthrough, excited to find where it would lead, but now I wanted nothing to do with my work.  I went home and cried, longing for the days at my old school when my professors understood me so well and always gave me the encouragement I needed.

I tried taking a walk around campus, I tried calling my parents to vent, and I even tried going out with a friend that night.  But nothing could lift the storm cloud that was now enveloping me.

IMG_6013That familiar depression—the monster I’ve fought for over half my life—had suddenly crept back in to eat me alive.  This was always how it began.  I’d been on such a long streak without a full-blown episode, but here it was to taunt me all over again…

I couldn’t leave my room the next day.  I spent the following day alternating between crying and scrolling through Twitter (but not tweeting anything because I was too exhausted to think of anything to say).  I eventually went to the lab to attempt some work, but just looking at it brought on a panic attack, so I gave up.

Let’s just say that I felt utterly pathetic and unsure why in the world I ever imagined I was cut out for grad school.

The problem with having PANS is that every time I have a bad mood or get extra anxious, I worry that I’m relapsing.  The disease attacks the brain, so the symptoms are psychiatric and neurological ones like depression, anxiety, OCD, involuntary movements, and too many others to name.  It can be easy to mistake it for “garden-variety” mental illness, especially in the early stages.

And for me, most of my PANS flares start with sudden, severe depression similar to what I experienced last weekend.  I’d also been getting other symptoms in the days leading up, like more difficulty sleeping and even some tics, which often proceed my flares, too.

Was this going to be like every school year in my undergraduate career, cursed with a major relapse at some point?

But then came Sunday.

As difficult as it was to make myself do anything, since I was being far more unproductive than usual I forced myself to get in the car and leave town for an afternoon.  I had so much work hanging over my head, but I needed to get away from it all just for a bit.

And you know what happened?

The darkness lifted. 

SunriseI felt like myself again by the time I returned to campus.  I got a renewed fire in me to prove everyone wrong—to prove that I really can do a strong thesis and have a solid career.  So I went home and got back to work.

Although the fear that I’ll never be good enough still stings, I’ve realized that something incredible happened because of that meeting with my professor: I had a somewhat “normal” response to a painful situation—the depression I experienced wasn’t from my brain being inflamed like it is in a true PANS episode.

It turns out recovery is complicated.

Many people think that recovery from PANS means a person has no mental health issues anymore, nor anything that could remotely be mistaken as a symptom.  Perhaps there are cases like that, particularly if they were caught early and treated promptly, but I think this is too idealistic an expectation for a lot of us who went years without care.

Even if my depression and anxiety were initially caused by an autoimmune attack (PANS) years ago, it seems to me that because the disease taught my brain those maladaptive patterns for so many years, it still takes less of an emotional trigger to send me back into them now—but now my problem has become psychological rather than autoimmune. 

It’s not surprising at all that I fell so hard and so fast into depression after what happened the other week—but the fact that a day out rather than more antibiotics or steroids broke through the darkness proves it had nothing to do with my disease this time.  I’m just a struggling grad student now, and no amount of Prednisone can fix that.

At this point, a year since I re-started treatment following a catastrophic PANS relapse that left me as a shell of my former self, I dare say that for all practical purposes, I’m better… 

But “better” is a tricky concept to define when you’re talking about a condition that attacks the brain, changes your personality, and forces you to relearn every aspect of normalcy.  Better doesn’t mean you don’t have any kinds of problems.

The reality is that I’ve just spent an entire year living at home and focusing on nothing but healing my brain—and for all I know, it’s still healing since the ability to stay on task and manage time can be one of the last things to improve.  Either way, though, it’s no surprise that being on my own and starting full-time grad school all of a sudden has been so jarring.  No wonder I’m having a hard time, since I’m coming from a vastly different world than all of my healthy peers fresh out of undergrad.

When you’re going back to school after a serious illness, you have to be patient with yourself and give yourself credit for showing up—even when others say you’re not doing a good job.  Don’t listen to them—you’re doing a fantastic job living the best life you can given the circumstances.

If you’re like me, you might be ready to go full-speed and leave the sick days behind, but it takes time to relearn your limits and adjust to a new life.  I’m learning that, no matter what anyone says, I have to be patient and kind to myself.

I’m happy to say that things are starting to improve since that conversation with my professor, and I’m beginning to find my footing.

No, I’m not the most efficient worker, and perhaps by those standards, I’m still a runt.  But you know what?  Sometimes the runts grow up to be the best dogs because of their differences.

So these days, I’m standing tall, and I’m proud of what I’m doing…  I hope others will soon be, too.


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P.S.: I’m tentatively going to appear on national talk radio next week for PANDAS Awareness Day on October 9th.  Stay tuned for more details on when/how to listen!