I first learned about Yulia through her hilarious ME advocacy videos on her channel, @FunWithCFS. Yulia was a Ph.D student when she got sick and she is one brilliant, multitalented spoonie! This is a tiny bit longer than my other guest posts, but every word is worth the time. Please read her painfully relatable, funny, beautifully written memoir excerpt and be sure to check out her videos in the middle of the post.
Hi! My name is Yulia and I live in Brooklyn, New York. I write, paint, and make YouTube videos. My field is comparative literature, and I’d been in the middle of writing my dissertation when I became sick in 2017. So now I’m writing (on spoonie time) a memoir about how it all went down. Below is an excerpt describing how the first day of acute onset ME/CFS can really flip the script.
Excerpt from The Mind’s Alleys in the Fog:
The instant I wake up, I sense that something is wrong. I’m unable to identify what it is, exactly, but I register that this “awakeness” is faulty, malfunctioning. It’s got a fatiguing quality I can’t quite place.
I lay in bed, scanning body and mind for cause, clarification. It offers none.
When I give particular bodily parts instructions to move, I find they resist. Only with great difficulty do I wrench my eyelids apart, then, with further difficulty, strain to keep them open. My first effort to sit upright proves unsuccessful. I fall back onto the bed, baffled.
Certainly I am familiar with a wide range of tireds. Before graduate school, I had been a competitive ballroom dancer, when I knew the tired of grueling dance practice. That was the sweet, sweaty tired of aching muscles. Then there’s the tired of the mind: 16-hour adjunct instructor work-days followed by insomnia; or, for a slightly different flavor, the morning tired after a manic, nightlong writing binge. The tired of illness, the tired of grief, the tired of depression. And many more varieties besides. But today’s breed of it seems worlds apart from the others I’ve met. Though I cannot know, if I had to guess, I would say that this is the tired of very old age, somehow arriving 60 years too soon.
It’s true that my body hasn’t been the most energetic lately, but it has never defied my will before. So I command it like a despot, arrogant in my rights and entitlements. This is ridiculous, body. Do you know who I am? I’m your owner. You’re just the residence. And no, I’m not about to examine the Cartesian mind/body dualism inherent in that statement!
After several tries, I manage to sit up on the bed. Surely, this achievement indicates that I’m reclaiming my sovereignty over the corporeal realm. I contemplate my options from here. Yes, this tired feels strange and different. But having mastered each of my former tireds, I should be able to clobber this one with the same tactics: exercise and caffeine.
Nearly 15 years of dance training have taught me that exercise often revives me when I’m feeling sluggish. When dancers burn out, the virtually universal rule is: drag yourself to the studio, turn on the music, start moving, and you’ll be surprised by how alive you feel. Movement is an infusion of energy, not a drain.
I’m no longer a competitive dancer, so I won’t be heading to the studio. Instead, I’ve got some basic exercises that usually flood me with endorphins and leave me more alert and ready to work. I force myself from the bed and onto the exercise mat, then push through a routine that I had done just yesterday to good effect. But this afternoon, the activity seems to have lost its magic powers. It’s torture to complete. My arms continuously buckle under the weight, my body slumps—an insubordinate, a mutineer. I lie on the mat, more exhausted than I’ve ever been. Wherefore, my endorphins?
Failing in the first tactic, I move on to the second, coffee. In the kitchen, I stumble over the brewing instructions, then find myself confused about how to make breakfast.
Since waking, another puzzle has been bothering me, though I’ve tried to avoid naming it to myself. On the verge of pouring cereal into a glass, I must admit that the problem runs deeper. It’s not just my body; something isn’t right with my mind, either—a brick is pressing it down. I want my thoughts to move about, leap and bounce, but they can’t so much as figure out the right kitchenware. And today’s coffee isn’t making them any sharper, nor is it adding any physical energy whatsoever.
Is tired even the right word for this? Can body and mind be this tired without cause? What happened to me while I was asleep?
Either my mind/body duo is not telling me something, or else I don’t understand my own state correctly. Yes, something is wrong, but as a graduate student I have a handy explanation for virtually anything that goes wrong: I must be lazy.
Graduate students, or perhaps academics more generally as a species, flog themselves for any potentially productive time they spend not working. No adversity is a match for pangs of writerly conscience. Here, for instance, are some things a graduate student might do when their mind is tired:
- Not coddle it. It is not a baby seagull.
- Throw guilt at it. Don’t even bother apportioning by necessity or severity of the crime. There is no such thing as too much guilt.
- Remind ourselves that only a handful of tenure-track positions still exist in the world’s universities and that, if we want a shot at getting a job one day, we’re required to work non-stop virtually every hour that we are awake (if there’s a graduate student reading this book right now: what the hell are you doing? Get back to work! It’s not like you can put this activity on your CV!)
- Squash laziness in its infancy, with unscrupulous force.
Whatever exhaustion may be happening to me, it’s no excuse to waste the day. So I haul myself to the desk and reach for my laptop. Today I will synthesize two arguments, add another source, revise at least ten pages. I believe them, these intentions of mine. This tired is only a few hours old, it isn’t “me” yet.
The document pops up, but when I see the first few lines, I’m stunned. I stare at the screen, unable to make sense of the text. It appears to be written in a different language, or by another, much smarter person. Could I really be reading my own words?
No need to panic, I think. There must be a reasonable explanation. I’ll just start off with something easier today. I downgrade to reading a short article. The lines blur. Each sentence takes a Sisyphean effort. I keep pushing them for an hour, refusing to believe that reading has become this difficult, then lie down and close my eyes. I lie for a long time. I cannot tell how long.
I was diagnosed 7 months later by Dr. Susan Levine in New York.** Those 7 months were enough to, let’s just say, “disillusion” me on the standards of many healthcare professionals, lulz. The year I became sick, I started a comedy YouTube channel for other spoonies. In the video below, I show you what it’s like to visit a doctor, ME/CFS-patient style.
If your friends or family members don’t understand this illness, no problem. I break it down for them in the next video, ME/CFS: A Guide for the Perplexed. Send it along so they can have a jolly good time learning about our interminable nightmare!
You may find that your friends or family members (or strangers on the street) tell you to “stay positive.” They want you to be outwardly happy about your pain, fatigue, and extremely uncertain chances of recovery. Otherwise, you might bum them out! I wax poetically on the subject of “positive thinking” in the next video, which you can send along to the all the healthy, abled, and ultra-positive people in your life.
You can find more videos here.
When I’m too brainfogged to use words, I find that art can express what I’m feeling. I usually use watercolor (woohoo, easy set-up and clean-up!). Here’s a couple of my pieces:
I also have a playlist called “Sketchbook” on my channel where you can watch me make and talk about art.
All of my creative outlets allow me to interrogate (I couldn’t just not insert a fancy academic word in here somewhere!) and reframe how I see my illness. I also use them to connect with other spoonies and even cheer them up—making another sick person laugh, even if for a moment, is one of my favorite feelings.
Even though this disease seems to be taken out of a science-fiction horror movie, I am so incredibly lucky to periodically experience good days, and to be in the rare position of an ME/CFS patient with access to medical care. I absolutely must take advantage of that and live as meaningfully as I can. For now, that’s by trying to spread beauty and smiles throughout our spoonie community.
Much love and healing to you all.
Find out more about my story, and watch more funnies on my channel, @FunWithCFS.
See more art on Instagram.
And follow me (for yells and advocacy) on Twitter.
Memoir in progress—stay tuned! 🙂
**Editor’s note: Dr. Susan Levine, mentioned earlier in this post, has helped many ME patients but can be problematic when it comes to Lyme testing (this is my personal experience — I had a mostly CDC- positive test and she didn’t think it was significant). Go to ILADS.org or Global Lyme Aliiance and click “provider search” to find a Lyme-literate physician. You can also have your own doctor request a Lyme test from IGeneX Labs.