Why Aren’t You Writing V: Overcoming Illness and Disability

Last time we talked about different writing tools you can use.  This time we’re going to talk about something particularly close to my heart: writing when you’re dealing with some kind of physical infirmity.

Even healthy people will experience physical and mental fatigue, eye strain, and neck/back/hand pain if they spend too much time writing, or write with poor posture. I’ve had various (completely healthy) people claim that they do their best writing while sitting or lying in bed.  This may be fine for short periods of brainstorming and so on, but it may cause all kinds of back/neck/wrist problems from regular longer sessions, which is what you’re working towards, right?

Sitting upright at a desk of a proper height is better if you can manage it.  It may seem obvious, but you will want to be mindful of your posture and make sure that your writing implements are directly in front of you, and you’re not twisting and putting excessive strain on your spine.

Be mindful Padawan

Even if you think you’re sitting straight, you may not be: after cranking out a 95,000-word manuscript this past summer I noticed that my breasts had become uneven!  That was mainly an affront to my vanity, but it was resulting from sitting with my shoulders unevenly hunched, so now I make an effort to sit mindfully and focus on keeping my shoulders open and even.  Keep an eye on your posture and notice if you are getting aches and pains in any particular area, or if your body is getting out of alignment.

Most schools of thought around yoga and meditation believe that maintaining an open chest and proper alignment of the spine will cause your mood to lift and allow a healthy flow of chi.  Even if you don’t believe in chi, it is certainly true that throwing back your shoulders and opening your chest improves breathing and boosts confidenceSit—or stand or lie—mindfully.  This is important work you’re doing, so honor it externally with your posture so that you can honor it internally with your attitude.  This is also another cue to your body that you are in “writing time.”

Even better than sitting at a desk is working at a standing desk, if you are strong enough.  (If you are fundamentally healthy but unused to standing for long periods, you may want to work on getting strong enough).  You can buy or make standing desks of various designs, or you can just stack a bunch of books or whatever on your regular desk and turn it into a standing desk.  Experiment with getting the height right, both of the screen and the keyboard.  If you work on a laptop like I do, you may find it helpful to invest in a separate keyboard so that you can elevate the screen high enough to look at without bending your head down, but don’t have to flex your elbows too much.

Remember, 1) writing is hard work, and you will get tired if you overdo it, but 2) it shouldn’t be horrendously painful, because then you won’t do it.  Experiment with different configurations of your physical space, and don’t be afraid to move between them during longer writing sessions.  E.g., I might jot down little notes while lying down in bed as ideas come to me, and then move to my desk to write out the full-length draft.  I also have a sitting desk and a standing desk placed side-by-side in my home office, and back when I was healthy and strong enough, I used to move back and forth between to give my back and rest from being in one constant position.

Ah yes, back when I was strong enough…On Monday, November 4, 2013, I woke up feeling…odd.  I had gotten a flu during fall break in October, and never really shaken it off.  That weekend I had planned to complete and submit several job applications, since my current job was a 1-year gig with no promise of renewal, but my carbon monoxide had gone off and I had had to evacuate my house.  It later turned out to be a false alarm, but it was a scary moment, and I fell behind on my work and also lost a lot of sleep over it.  By Sunday afternoon I felt like something was really wrong with me, I felt so tired and out of it, and a trip down the Google medical symptoms rabbit hole made me start wondering if I had adrenal fatigue.

But of course I wasn’t going to let something like that stop me from going in to teach, so even though I found myself ripping off my hat as I was walking my dogs that morning because I couldn’t stand the feeling of it touching my head, and my dogs kept giving me worried looks before turning tail and dragging me back home, I boldly set off to campus, ignoring the weird flashing in my peripheral vision.

At 2:30pm, half an hour into my last class of the day, I was hit by a wave of the worst feeling of ICK I had ever experienced in my life.  The final 20 minutes of the class stretched out like an eternity of suffering.  Every few seconds I would tell myself Just one more minute…one more minute…one more minute.

I made it through the class and the rest of the day, but experienced stronger and stronger hallucinations that things were flashing around my head, and I was wearing the ceiling as a hat.  The next day was no better, and neither was the next day.  For the first time in my life, I missed an entire week of class, and when I did drag myself back onto campus, something was still very wrong, and wouldn’t get right.

Fast forward four years, and not only had things still not gotten right, but I had lost 99+% of my ability to walk, going from an avid hiker and yoga practitioner to someone who had to stop and take breaks, even while holding onto the wall, to cross a single room.  I felt constantly jet-lagged and “out of it,” I had weird vision problems where everything around me sparkled or moved or twisted in strange ways, I had a constant sore throat and swollen lymph glands, and the joint and muscle pain and peculiar twitching that had plagued me since the age of 14 had gotten dramatically worse.  Despite this, all my lab results were normal, and doctor after doctor told me I was suffering from depression, anxiety, and “adjustment disorder.”

Gosh, you say, what could it be??????  It’s so hard to guess what condition might cause an avid outdoorist to develop debilitating weakness, joint pain, and a host of neurological problems, isn’t it?  Who could ever figure that one out????????  Certainly not a doctor practicing on the East Coast of the US!!!!!!!

No one was less surprised than I when I finally, after several years of seeing the Dark Side of the medical establishment, got a positive Lyme test.  Most likely I was first infected in my early teens, and then experienced flairs and periods of remission until the fatal flu of 2013, followed by several more fatal flus (“You have to expect to get sick if you work in education,” one doctor told me sweetly), allowed the disease to slip its chains and wreak havoc on my immune system, central nervous system, and energy production system, causing me to develop the full-blown symptoms of fibromyalgia and ME/CFS.

Anyway, the point of all this is that being healthy is not a guarantee.  Everyone gets disabled at some point in their lives.  Nor is it a prerequisite for being a writer.  Rebecca Wells wrote one of her books while debilitatingly ill with Lyme disease.  Laura Hillenbrand wrote all her books while largely homebound with ME/CFS.  Even extremely ill people have managed to produce a respectable body of work: looking at recent writers and artists within the chronic illness community, the largely homebound or even bedbound bloggers Jamison Hill (ME/CFS and Lyme), Laura Chamberlain (ME/CFS, Lyme, fibromyalgia, endometriosis), and Anil Van der Zee (ME/CFS) blog regularly and produce articles for publication, and filmmaker and activist Jennifer Brea (ME/CFS) directed an entire documentary from her bed.

So if you have some significant physical impairment, what do you do?  You figure work-arounds, obviously.  If you have vision problems, using voice recognition software is pretty much a no-brainer.  If you can’t sit at a desk and type at a regular computer or write with pencil and paper, then you lie in your bed and type out your composition one tiny sentence at a time on your phone.  In fact, while the phone is not ideal as a writing tool, for the severely ill it may be the difference between writing some and not writing at all.  It’s light and can be held in one hand, and you can experiment with adjusting the font and/or the screen brightness.  It will be a slow way to go, but better slow than never.

On the other extreme, Laura Hillenbrand couldn’t handle looking at a computer screen and had to work only with hard copy, and would have paper copies of the newspapers she needed for her work sent to her home instead of straining at microfiche on a screen.  As always, experiment, figure out what works for you, and don’t be afraid to think outside of the box.  As long as you are producing text, you are writing the right way.  And once again, physical impairments can be the push to get you to work on your visualization and mental composition, rather than scrawling down things quickly and wasting all your energy and inspiration before your idea is ready.  To jump over to the hard sciences for a moment, Stephen Hawking produced many of his theories while too debilitated by ALS to write out equations; instead he would work through his thoughts in his head.

However, if you are severely ill, you may need to modify the guidelines for regular and disciplined writing.  Or rather, you will still be disciplined about it, but part of your discipline will involve strictly limiting the amount of time and energy you spend writing.  This is not coddling yourself; this is being smart.  You are an athlete husbanding your energy for when it’s needed.  You will not finish your project if you burn yourself out.  Figure out what you can do and then avoid overdoing it.  Jennifer Brea only worked 1-2 days a month while she was severely ill, and she still finished her film.  If you are ill or disabled you can still create.  In fact, you may have more drive than a healthy or ablebodied person.  And if you are healthy and ablebodied, don’t let your abundance of health and energy get in your way and cause you to waste your vision, your creativity, and your drive on trivialities.  Like money and time, health can actually get in your way, luring you to spend all your time burning off that energy by rushing from trivial task to trivial task, putting out short-term fires that don’t need attending to anyway.

On that note, I’ve already overfulfilled my writing quota for the day and weird things are flashing around my head, so I need to listen to my own advice and quit now.

Next episode: putting it all together

Want a free copy of my fantasy short story collection Winter of the Gods and Other Stories?  You can get it here.

6 thoughts on “Why Aren’t You Writing V: Overcoming Illness and Disability

  1. Elena, this is a sobering post filled with great advice. Thank you for sharing your hard-earned wisdom about writing with health difficulties, and very sorry you have to deal with serious medical issues.

    Liked by 1 person

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