Damn The Headache—I’m Taking Back Reading

P1010904One of the best things about starting over so many years after my injury has been reading. I’ve been a voracious reader for most of my life. During my years as a freelance journalist, I’d get up at 6 AM, or earlier, make a pot of coffee, and read for hours. I subscribed to 12 or 13 magazines and I’d power through every issue, rarely skipping an article, until I felt guilty about my children watching too TV (even if it was Sesame Street).

When I shifted to communications work, I had less time for magazines, but I scoured newspapers daily for stories related to my clients’ mandates so I could ghost write letters to the editor and op/eds, and if I happened to read a lot more than necessary, that was fine. I love good literary fiction, and although I was too busy to read more than a few novels a year, I always took time to read a few on the annual camping trip or over the Christmas break.

After my injury, though, reading for pleasure completely became a thing of the past. Even now, 12 years after the concussion, nothing triggers my headache faster than putting on my reading glasses, especially if I’m reading from the computer screen.

Very quickly after the accident, with no idea what a long-lasting choice this would be, my husband and I decided I had to focus the few good reading hours I had every week day—the few hours before The Headache became intolerable—on billable work only. I divided the rest of my time between health care appointments and rest.

For months, I was only able to tolerate reading for a few hours a day. For years, even when that improved, I still felt I couldn’t afford the time and pain to read for pleasure.

Before my injury, nothing had ever been higher on my Christmas wish list than books. Afterward, there was no point in making a wish list of books because they just gathered dust. Reading was, without a doubt, one of the many losses that steepened my descent into depression. Not only could I not escape into a different world in a way that’s not possible with TV or DVDs, I could barely keep up enough with events around the globe to carry on a conversation about anything larger than my increasingly confined middle-class suburban life.

When I began the MFA program, I worried about being able to manage the reading (and my lack of awareness of what was going on in the world at large, never mind the literary world, embarrassed me). But once I started reading again, it was like getting together with an old friend.

I still don’t read as much as I used to, or as I’d like to. That’s partly because the pace of my reading has slowed considerably, not just because of The Headache, but because the injury triggered symptoms associated with post-trauma vision syndrome.* The Free Dictionary defines PTVS this way:

A defect in visual perception that follows a neurological event (e.g., traumatic brain injury, cerebrovascular accident, multiple sclerosis, cerebral palsy), which is characterised by the perception of movement by objects that are known to be stationary, the running together of printed text, attempting to walk on a seemingly tilted floor, significant imbalance and spatial disorientation when in crowded, moving environments.

In the early days after my injury, I had all the above symptoms, and then some. The feeling of walking on a slanted floor is long gone, but I still become disoriented in a noisy, crowded room (MFA folks: this is part of why I don’t go to many parties), and I still see things moving out of the corner of my eye that I know aren’t moving.

The most frustrating symptoms for me have been the reading-related ones, like losing my place when I get to the end of a line of text; having double or blurred vision by the end of a day (or sometimes earlier); and needing to reread anywhere from a paragraph to a few pages because I’ve lost focus and absorbed nothing. Sometimes by the time I reach the end of a book, I feel like I’ve read at least half of it twice.

The good news is I’m not letting it stop me anymore. I knew I missed reading for pleasure, but I didn’t realize how much until I took it back. And it really was about taking it back. It was about deciding enough was enough, The Headache be damned, it was not going to run my life anymore.

My husband is a voracious reader, but he’s a library user. Not me; I like having a book collection, though I don’t collect books the way some people do. I’m the only one in my family without asthma, and books are dust-collectors, so I limit myself to two large bookcases in my office. Every few years, I used to clean out some of the old to make room for some new.

For several years, I didn’t need to do that. There was a disheartening lack of turnover on my bookshelves. But when I started the MFA program, I decided to change that, too. I cleared out one shelf for the nonfiction books and magazines I planned to read. I recently had to clear out a second shelf for the books, and a third for the magazines.

To people who have always read voraciously, collected books for decades, and don’t live with asthmatics, the single shelf in the picture probably doesn’t look like much. To me, it looks like heaven. When I took the photo, I decided to count up the books I’ve read since I started the program and discovered, to my surprise, I’ve read at least 30 in the past two years. (That’s not counting a few I took out of the library, dozens of magazines, and a dozen or more articles I read in the newspaper or online every day.)

I’m doing a lot better than I thought I was, and that makes me ridiculously happy.

Starting over in middle age is hard, especially when you have particular strikes against you that make it more difficult to keep up with younger peers, or your own expectations. But every so often I realize I’ve actually exceeded my expectations, and that by itself makes up for a lot.

 

* (For those interested in such things, my PTVS was identified by an optometrist who specialized in vision problems related to neurological dysfunction. It includes convergence insufficiency and mid-line shift. Medical doctors are more likely to refer to it as vestibular-ocular dysfunction. I later saw an opthamologist who provided the same diagnosis and remedy: glasses with refractive lenses, much like those Hillary Clinton used for a while after her concussion in 2012.)

 

 

 

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