reading with chronic migraine

Life Without Books: Mourning My Migraine Sacrifice

Not all of the friends lost because of chronic illness are made of flesh

The backs of shampoo bottles. Street signs and shop names. Catalogs and junk mail. Words swirl in my mind all day long. My eyes are drawn to words – in the car, in the shower, on the toilet, in the kitchen. A stack of papers on the counter is a temptation too much to resist for me. I have been accused of being nosey more than once, rifling through a friend’s mail.

The author and her dad and a book. 1993ish

In other words, I love words. A reader since age four, words have been a big part of my life for as long as I can remember. I hold my own memories and the stories I have read just as dearly. Anne of Green Gables was my bosom friend, dear to me as her living, breathing counterpart. Mary, Beth, Jo, and Amy March – the sisters from Little Women – taught me almost as much about feminity and independence as my own three sisters.

When I first encountered death at a young age – in its slow, stinking form of cancer – and its partner grief, I took to the page. I wrote a story – full of plaigarism, spelling mistakes, and hearts over the i’s like you would expect from a 9-year-old girl. It was morbid and a little silly, but it was the only way for me to make sense of something as big and unpredictable as death – through words.

Reading with Chronic Migraine? Yeah, Right

The author and her mom and a book. 1993ish

Eighteen years later, Chronic Migraine has changed everything. Chronic Migraine brings a lot of baggage – debilitating and diverse symptoms, ruined relationships and careers, destroyed dreams and altered plans. Among other things, Chronic Migraine brings me light senstivity, a headache all the freaking time, and a very different relationship with words.

I still love words. I devour podcasts and music and audiobooks regularly. Writing is a huge part of my life. But books – the magical, rough, fragrant physical objects with their coffee stains and barcodes – are no longer an integral part of my human experience. Chronic Migriane has stolen so much from me that it may seem silly to mourn the loss of books, but for me, it is devastating.

I can still read, of course, and sometimes I still do. But in the same way that I have to carefully moniter and allot the little energy I get each day, I have to regulate how and how long I use my eyes. Because the majority of my pain is in my head, my face, my eyeballs, and my neck, any tasks that involve visual and/or intellectual concentration is difficult and draining.

I am so, so, so lucky to have a paying job where I not only get to learn and advocate about my illness, but I get to use the very thing I love so dearly – words. Like so many other jobs, mine involves a computer screen. Every hour I spend looking at a computer screen or shopping in flourescent lights or walking in bright sunlight is an hour that I cannot spend looking at a book. I simply do not have the well hours and my aching eyes do not have the ability to do it all. Reading with Chronic Migraine is near-impossible.

From Dostoevsky to To-Do Lists

Chronic Migraine is a lot like this Twilight Zone episode. Haven’t seen it? Netlifx.

Giving up the pages of books is a small price to pay for what I have gained. Gainful employment and being active outside are two big parts of my life right now. To a healthy person, this sounds basic, but anyone with a chronic illness understands that both of these are HUGE. This time last year both were merely fantasies.

I still have mulitple library cards. I still go to the library regularly, with my laptop to write or sometimes to just walk up and down the rows of books, breathing deeply their smell, carresssing dusty spines, and remembering old friends. I still scribble in a Moleskin from time to time and skim too many political articles online.

Sometimes I pick up a book of poetry or short stories, but unlike in my healthy life, I rarely finish an entire volume. Reading with Chronic Migraine is a stunted, unsatisfying affair.  I read The Brothers Karamazov at 17 and at 27 I stick to mainly to the backs of shampoo bottles, street signs, and junk mail.

I miss books deeply – I miss seeing them on my nightstand and feeling them knock against my thigh in my purse. But mostly, I miss myself when I was reading books. I miss the days when, “Does my brain work?” and “Will I be able to open my eyes today?” were not the first questions that ran through my mind in the morning.

But I am coping – with this loss and the many, many others that I have sustained at the hands of chronic illness. I have faith that someday books will be a big part of my life again. Until then, I’m going to keep holding on tight to my library card – and my Audible subscription.

9 thoughts on “Life Without Books: Mourning My Migraine Sacrifice

  1. I no longer have chronic migraine. This day last year (literally) started the first migraine of what would end up being about 40 migraines throughout the year with all but three of them in January-March. It turns out the migraines were caused by a brain tumor we knew nothing about for awhile. But although I still get occasional migraines, they’re back to their more seasonal appearances.
    But I remember not being able to read books like I wanted to; the light I needed would be too bright and even just focusing on the words was enough to increasing my pain level. So I hardly read at all last year, which was depressing coming from a girl who appears to have grown up very much like yourself in the reading department! One of my goal this year is to read 30 books, so I hope I can manage. Best of luck to you that things will improve for you!

    1. Laura, I am so happy to hear that your migraines have eased up and you’re able to read again! What a beautiful thing! Books become like friends, and being unable to read really feels like a sacrifice. Thank you for your thoughts and best of luck to you and your reading goal!

  2. Weird I should randomly find you on Twitter Angie. I am a writer missing words and books like crazy! Your post rings so true. I’ve been in mourning for a while, nor having read a page from a book in months. I need to focus on that more when I feel better instead of sorting the mail or something less important. 😊

  3. Wow. First of all, I’m so sorry. Chronic Migraine, I feel sick even thinking about it. All the pain you must be in! I’m so sorry you lost your ability to read entire books. When I’m in a bad period, I also lose that ability and it’s one of the worst things I can lose. I’ve been very sad about it. Now, I’m a bit better so I can read. I will never take it for granted again.

  4. I can totally relate to this… thank you. I am not chronic at the moment but I have been and books had to take a back seat to just getting through the basics of life. Hang in there.

    1. Thank you for reading and your kind words. I hope to someday be where you are – back to episodic and reunited with books. Take care!

  5. This struck a chord with me I used to love reading, but since my last chronic episode 4 years ago which I’m still struggling back from I’ve just not been able to finish any. I can read articles and blogs like yours but full books still seem like a distant memory. Going someday I too will feel well enough to read again. Also feeling blessed that I’m at lest well enough to work for the time being.

    1. Thank you for sharing your experience, Marie. We give up so many things to our health. It does help to focus on the blessings – once you start looking for them you realize how much you have.

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