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.

But eight months ago, my life came to a screeching halt.

All of a sudden, the simplest of activities would leave me feeling flu-like and foggy-minded. I would try to work on my thesis for half an hour and then be completely out of energy for the rest of the day and the day after and the day after that. I would walk down the driveway and wake up the next morning in pain all over my body—and it would take a week to recover. I couldn’t focus anymore. I completely screwed up a job that I could’ve nailed as a college freshman because my reasoning abilities became so poor.

Finally, a trip to the doctor confirmed what I’d been trying to deny for a whole year prior: I had developed Lyme- and HHV-triggered Myalgic Encephalomyelitis. There was no cure. There was no treatment my doctor knew to try after two years of intense antibiotics seemed of little help. So I thought my life was over unless I could prove to myself that it wasn’t by staying in grad school.

For the rest of the summer, I held onto the fantasy that I could return to grad school in September, push myself at least through the master’s, and then I could take time off to recover. After all, I’d pushed myself through college while battling my first neuroimmune disease PANS the entire time.

But then my doctor told me I risked never getting better from M.E. if I continued. At that point, I was in a wheelchair part-time, still walked around the house alright, and was starting to manage a couple of hours of productivity on good days. She essentially told me that if I tried to power through and stay in school, I would likely end up in a wheelchair full-time and be too sick to work at all.

So eight months ago, I made the jarring decision to change my whole life’s plan.

Admittedly, I cried a decent amount when I wrote the dean and my advisor to say I was leaving. I cried when the first day of school came around, and I was stuck at home. And I have cried many times in the last year thinking of the life I could have had and wondering if my thirties will be better than my twenties.

Today, as my former classmates participate in the virtual ceremony, I lie on the sofa hooked up to an IV bag because my body is being particularly uncooperative today—this year, I’ve learned and trained in how to give myself IV fluids when my heart rate is too high for too long. It sounds cruel to think of this contrast between the life I thought I’d have and the life I actually have right now, but the truth is that, now, I no longer much miss grad school itself.

What I do miss are all of the little things I used to be able to do a year ago.

I miss being able to study or do homework all day long without consequences, even if I didn’t always like doing so. I miss being able to go to the lab late at night to finish whatever drudge work my professors had asked me for. I miss being able to climb the three flights of stairs between classrooms when the elevator was too crowded. I miss being able to mess up my sleep schedule to get everything done without making myself sick the next day.

But even more, I miss all the simple pleasures of being on my own in my early twenties. I miss going for a walk in the park, going to a show at the last minute, and going for a drink with friends. I miss being able to go on dates that never went well. I miss being able to dance and move freely without wondering if I was getting my heart rate too high. I miss living in my own apartment and making it exactly how I like it. I miss the equilibrium my health had reached and what it was like to not constantly be evaluating every aspect of my existence to figure out what to do with my treatments.

As soon as I decided to leave grad school, it was a huge burden lifted off me. Sometimes the thing you fear doing the most is exactly what you need to do. My depression got so much better. I stopped worrying about what people would think when I showed up in a wheelchair. I stopped worrying about the relapse that would almost certainly come when I moved back to school. I stopped worrying about whether I had it in me to finish my thesis.

And I started living my life on my own terms…

Well, that is, I started living my life within the limits of what my body allowed me to do. But now I don’t have to worry about trying to fit those limits into the rigid requirements of grad school. Now I enjoy my remote, part-time consulting job on the good days, and I rest on all the others. I work ten hours in an entire week on a good week. I’m not able to do nearly as much work as I would like, but I consider myself fortunate that I’m in the 25% of ME patients who can still work at all.

It’s taken me months to accept my circumstances, but I try to view what has happened as simply different from what I expected, rather than as something I should feel sorry for myself over. I tell myself that “different” doesn’t automatically mean “bad”—I tell myself this knowing full well that a university position is not realistic unless I improve a lot more.

So I choose to put my energy towards focusing on being the best consultant I can possibly be—I’m pleased to say that treatments and time have gotten my mind and body working well enough to apparently be doing good work for my job again. As a result, I’ve discovered that I’m happier working in industry rather than academia alone. I try to look on the bright side that leaving grad school has opened doors I wouldn’t have seen if I’d stayed. All of this said, I’d still like to get well enough to at least finish the master’s degree someday so that I have even more opportunities.

What it takes for me to function as well as I do…

Today, I’m very proud of everyone who is graduating this year in the midst of the pandemic, and we should certainly celebrate them. But with May being ME/CFS Awareness Month, I want you also to remember all of us who are missing—missing from graduation, missing from full-time jobs, and missing from the lives we once knew.

I am only one of the millions missing.

There are an estimated 1,000,000 people living with ME in America alone—that’s 750,000 Americans who can’t work because of it, 250,000 of whom are bed- or house-bound.

Spare a good thought for us. Take action for us. Believe and support us. And though we may be missing, never forget that we are still in our homes fighting the good fight until there’s a cure.

Image adapted from Wikimedia Commons

4 thoughts on “Remember M.E.: Why I’m Missing Today

  1. It’s a shame you couldn’t get your master’s degree. I got mine (though only after my third try at a PhD), and it made me feel like less of a failure when I left.

    It’s great for you that you are able to see doors as having opened and not only just closed after having to change paths. For me, while my current (well, current as of before the whole virus situation) job is good in providing not only an income but some sense of immediate purpose and ability to advance myself, I can’t let go of ambitions that are not realistically possible in my current work environment.

    A lot of my issue has been dealing with the disconnect between needing intellectual stimulation and needing to take on really ambitious projects to not be depressed, yet on the other hand not being able to complete such projects due to my mind being so disorganized. I have the vision and not the follow-through, like an artist who sees a gorgeous field of flowers in his mind but the brush shakes in his hand when he tries to paint and everything comes out wrong. There’s this crushing feeling of untapped potential there.

    Though I do relate to sometimes a “forced break” providing some insights or opportunities that would not have otherwise been there–the coronavirus shutdown has provided some of that for me, which I will post soon about on my own blog.

  2. I’m tired right now, angry, impatient etc I have PANDAS. But I still feel so pulled to say something even though I can’t think of much else right now. Your a beautiful person I haven’t met anyone who has ever gone through what you have and it’s astonishing. Feel better really really soon and keep being you. trust me your needed

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