I’m a Writer Who Can’t Read. Here’s What You Should Know.
“A good writer is a reader first.” It’s a cliche for a reason. Reading widely is just about the best way to learn about the world at large and yourself as an individual without ever leaving your home.
I should know. I hold a BFA in creative writing, and just about 75% of the curriculum was reading — classics, metafiction, poetry, mythology, journalism, so. much. literary. fiction. After I graduated, I became a library worker, and finally published my own novels. My position at the library kept me flush with reading material both in and out of my sphere of professional interest.
And then came 2020. A case of COVID that just wouldn’t leave. Suddenly, my ability to concentrate was reduced to almost nothing. For some reason, I could no longer hold fiction in my head. I was able to read nonfiction — devoured it, even. I assumed it was some weird pandemic trauma. I knew a lot of people who struggled to disappear into fiction with the way the world was going.
In February 2022, I got my second case. This one wrecked me. The acute phase leveled me worse than any flu I’d had, and in the months to follow, I would be diagnosed with, among other things, an energy limiting disease called myalgic encephalomyelitis, commonly known by the acronym ME/CFS.
Ironically, the last full book I read was about ME and how the desperate author tried just about everything to treat it. (To the point where I don’t feel good mentioning the title; I don’t want people to think some of the things she tried are good ideas.) ME/CFS is patently awful. Even reaching outside of my own experience, the numbers consistently show that patients experience a lower quality of life than people with MS, various cancers, certain forms of organ failure, and stroke.
In my non-expert opinion, the reason for this is how much the disease takes. The hallmark symptom of ME/CFS is post exertional malaise. This is a full-body tackle: flu-like illness and bone-tiredness that slams into the patient anywhere from some hours after activity to 1–2 days later. The Johns Hopkins piece on PEM I linked makes it very clear, too, that this activity can be physical, purely cognitive, sensory, emotional — the body doesn’t differentiate. I can walk around the block, I can have a difficult conversation on the phone, I can chop vegetables, I can try to balance the budget, and the resultant general misery will be about the same.
Then there’s public apathy and misinformation. The leading study cited by doctors everywhere about ME/CFS came from the PACE trial, which determined very helpfully that ME/CFS was largely due to physical deconditioning and psychosomatic — “in patients’ heads”. Graded exercise therapy, or GET, along with CBT, was the order of the day. If you’ve ever had physical therapy for an injury, you know the basics of GET. Start small, build up tolerance, listen to your body. The problem with this is that ME/CFS patients don’t build tolerance to exercise — and the PACE trial was riddled with confirmation bias and methodological errors.
The problem is that PACE was so widely vaunted, originally published in The Lancet and unveiled at a prestigious conference, that lots of doctors read the dismissive headlines (“Got ME? Just get out and exercise”), figured that was all there was to know about the disease, and handwaved patients’ suffering.
COVID and long COVID brought to light the dearth of understanding and concern about ME. Suddenly there was a spotlight on postviral diseases and the general shrug the medical community had given them. That doesn’t mean every doctor has gotten with the times, however, and as of right now, there’s not a whole lot known for sure about how to treat it. Except that the insistence on exercise is very bad. Patients could have told you that. (This has been a problem so long there’s a Golden Girls episode about it.)
Comfort Reading
Even though I was new to ME/CFS, I was not new to disability. I broke my spine in a car accident in 2016. A sudden entry into the world of chronic pain made everything much harder, and I was used to having to find new ways to do things I loved. Or things I didn’t and had to do anyway.
I can still tell you exactly when I figured out that I could no longer read anything longer than a short form article. September 2022, a sun-soaked Wednesday afternoon. I had had to come home from work early because another fun thing ME/CFS does is amplify chronic pain. I got these delightful migraines caused by the combination of a CSF leak in my spine and stress already, and when long COVID hit and brought ME with it, these became unbearable.
One thing I am not good at is resting. Even though I was home for the day, I decided to pick up my husband’s book. I had been putting off reading it because of the difficulty I’d had post-2020. I assumed it was burnout, stress from my own writing, stress from my library job. But it was actively hurting his feelings that I hadn’t read it and stressing him out that I hadn’t given him my opinion on it yet. I cracked open the proof copy he pointedly left on the tray table next to the couch.
I read two lines. My eyes flicked ahead to the bottom of the paragraph like they usually did — I could never just read the whole paragraph chronologically. That wasn’t the unusual part. I was used to doubling back and rereading for comprehension.
The problem was that when I read the last sentence, everything that came before was gone. I went back and reread and it was like I was reading them for the first time. I then tried to read the subsequent sentences — and the first two lines were gone again. I tried to muscle through, chalked it up to strain from the bad day. I realized midway through the scene I had no idea who was talking or even present.
This was not Jason’s fault as a writer, by the way. His work is lively and engaging — always has been. I put down the proof copy and tried to pick up Lycanthropy and Other Chronic Illnesses. I’d been trying to read that for months. Suddenly I got overwhelmed with the sick feeling I get when I’ve pushed myself too far. I grabbed Nimona — my favorite graphic novel, one I read for comfort. It was like the characters were strangers. It felt as though the act of reading was curtained off from me and all I could experience was the stress of understanding I was doing it poorly.
I tried reading Jason’s book so many times over the next two weeks. I tried starting from the beginning. I tried having him spoil the book for me — something I’d done in the past when I was overwhelmed by work and needed to view a book objectively. Nothing made a difference. I broke down and admitted to him that I just couldn’t.
Occupational Therapy
So obviously, when you suddenly can’t do something you used to love, you get concerned. And I do mean I loved it. I read through both my elementary school library and the city library’s entire collections. When I was in trouble as a kid, my parents would take whatever book I was reading and put it on top of the fridge as a punishment. I experienced a bit of what most of my academic friends deal with post-graduation, where you struggle to read for fun anymore, but I found my niche in kidlit and soon expanded outward to anything and everything again.
My doctor ordered some brain scans and cognitive testing. Scans came back patently normal (which is something chronic illness patients love to hear. Nobody wants to be sick, but when you already are and testing doesn’t turn anything up, this can be insult to injury). It took me months to get into the occupational therapist. Somehow in the long COVID world, occupational therapists are the ones who got charged with helping us figure out how to put our lives back together.
My OT sat me down in her tiny closet of an office and pulled out a spiral-bound, well-loved, xeroxed-half-to-death book of exams. I was given short paragraphs to test for comprehension, individual words to test for memory. The only thing I struggled with was word recall. I already coped with this with circumlocution — I had a speech impediment as a kid, and this is how they taught me to deal with a word I couldn’t say. Synonyms! I’ve always been good at synonyms.
So what was my problem? I demanded of this nice lady, who kept trying to get me to drink green tea. I hate green tea. Can’t do caffeine of any type; dysautonomia will do me in. She printed me off a powerpoint about pacing. This is the primary thing people with ME/CFS can do to try to tackle the fatigue monster.
Unlike GET, the goal of pacing is not to work yourself back up to “normal”. It’s to try to space out your activities with rest to stave off PEM as much as possible. I had been white knuckling it, forcing myself through my day at the library, then coming home and trying to write. I am an expert white-knuckler. My family is the quintessential “rub some dirt in it — do you need me to cut it off?” midwestern doctor-phobic bunch. I was doing absolutely everything I could to keep being “normal” and then passing the heck out. The exertion-crash cycle wasn’t so much a cycle as me ramping a bicycle off the top of a mountain daily.
And then came the bit I really didn’t want to hear. My brain was struggling with input. It was true that I hadn’t been able to listen to music while driving, and I couldn’t stand to hear my coworkers talking down the hall, and that I’d had to turn off my beloved Critical Role when the sounds and players flailing and music all got to be too much. But surely that didn’t mean I couldn’t handle the most passive, beloved form of input possible — reading!
Turns out reading is actually super demanding as a cognitive process. It also turns out to utilize executive function, and mine was already…not the greatest. I’m neurodivergent in ways that hadn’t fully been explored before long COVID came and flipped the table of my cognitive function. Long COVID is proving deleterious for people with previous ADHD diagnoses, and I never really got to probe that.
Okay, I said, so where are the workarounds?
And ME/CFS laughed
The very hardest thing for me to get used to with ME is that when ME says no, it means no. I came fully ready to explore various adaptations, accommodations. I had been hyping up audiobooks for years! Maybe that was my salvation!
Well, the part of your brain used to listen to stories and to read them is actually the same. Which is fantastic news to people with auditory or visual concerns or learning disabilities. My problem is that all input is problematic. I can’t listen to a podcast without feeling like I’ve run a mile. I didn’t realize it, but I never opened any of the videos my friends sent me because it was a bit of an assault on the senses. (Also, can we pivot away from video yet? Not everyone, including me, is meant for the medium.)
So what about reading smaller chunks? I can still get through short news articles. This works…extremely slowly, and some days it’s really not a good idea. But that’s part of learning pacing.
Short stories! Never was a fan. Poetry! Only in certain cases. Flash fiction! Gimmicky and unsatisfying. The problem is, I know what I like. I liked reading long books. I liked reading sweeping series, where memory plays a big part, and brain fog has rendered mine holy like a colander. I liked reading my husband’s books and laughing with him into the night about craft and his characters and his unique voice. Right now, that’s not happening. And right now, that has to be okay.
Acceptance and the future*
I have a lot on my plate. Trying to apply for disability, because mountain biking off a ramp into the crash valley every day didn’t work for me. Doing ongoing therapy to understand my new and oftentimes changing limitations. Pacing has led me to if not a more capable era in my disease, at least a more aware one.
Throughout, writing remains my stubborn goal. I didn’t give it up when I broke my spine and ME/CFS isn’t getting it away from me unless it literally starts killing me. Telling stories is like breathing for me. Sound pretentious? Probably, but I was writing stories before I could spell my own last name. It’s intrinsically a part of me. It has absolutely been changed by my illness — everything has — but I refuse to give it everything.
The other strange bit about this is that reading my work doesn’t seem to bother me as much. I get tired, yes, but instead of having to find my place in a completely new landscape, it’s a reminder of a thought I’ve already had. A reminder that it turns out is very necessary as I learn to adapt my writing process, which is a whole nother article. This has been a point of contention for some reading purists in my life, not to mention my husband, who watched bewildered as I failed to read his book, but can sit down with my own just fine.
With the exception of his feelings, which I care deeply about, the scoldings from the outside have just made me tired. Well, everything does, but specifically listening to people who have never had to wonder if they can physically hack their favorite things wax philosophical about the craft of writing gets infuriating. You “can’t” write unless you read? Is that really true?
And library folk. I will go to my deathbed asserting that public libraries are a cornerstone of democracy and that the freedom to read should be amended onto our constitution. But OH BOY is the judgment neverending. “I’d die if I couldn’t read.” Would you? Would you really?
Or would you be like me, heartbroken, frustrated at watching a piece of yourself you identified so strongly with that you haven’t been able to remove it from your bios ripped away, and then keep on keeping on? Because I don’t have a choice, kids. This isn’t resilience; it’s necessity. My choices are keep going or despise myself and my new body, and I do not see a point to that second one. It’s not conducive to living.
Internet leftists are also very bad about this. They’ll go on about how you have to read to understand the world. And reading is a very important method of doing this. I will advocate for it until there’s no more breath in me. But there is a surprising amount of assumption of laziness associated with people who have not read widely, when the truth is multifaceted.
There’s a popular joke running around the internet about how “reading is ableist.” What the people repeating it don’t understand is that the discussion is much wider than those three words or the person who originally said them. Sometimes, people physically can’t read. It doesn’t say as much about their priorities as you think. It says quite a lot, however, about people who judge others as though reading is an intrinsically moral activity.
I suppose to some of these people, I am choosing to prioritize writing over reading. I’m focusing my pacing efforts on adaptations to the former and not the latter. But at a time in my life when I don’t have a lot to give, when I need help to shower and fill out disability paperwork, when I can’t be sure I’ll even have enough energy to go to required doctor’s appointments, my choices are extremely limited. Which parts of yourself will you cling to when disease does its level best to strip you to the bone?
And you might think you know the answer now, but I guarantee you, when your back is to the wall and you have to choose what to let go of, necessity will make that decision differently for you.
*this is not an invitation for unsolicited advice. I am working with my medical team within my abilities to understand what I can do when. This includes assessing for ADHD. Please refrain from making recommendations, especially for books and treatments, in the comments.