4/5 stars
Here is the window I've been looking for to help people understand chronic pain... to peek inside and say "Ooooh, ok, so you live with that misty fog of pain around your body, like, most of the time?!" Why, yes. Yes I do. And, as Huber says, I could probably use a t-shirt that says, "Excuse my inability to process your spoken language. I won't be able to meet your cognitive expectations of me today." For the really bad days, anyway. If it was a little shorter, I'd put it on a mug!
I have had headaches, which I now categorize as migraines, for basically my entire life. I do not remember a time when I didn't get headaches that sometimes just stop me in my tracks. There are definitely days when I feel totally fine... and when those days happen (especially after a bunch of days of headaches) all I can think is, "This is AMAZING! Wait, so the rest of you just LIVE LIKE THIS ALL THE TIME?!"
This book put into words what it's like to live with chronic pain. Huber has multiple autoimmune disorders, and many of her experiences are far beyond the scope of what I live with. But there is such an eloquence with which she talks about chronic illness, gratitude vs adaptability, breathing, the guilt and shame of illness/pain, and this nation's healthcare system (and lack of training in how to address pain management). The essays in Pain Woman are poetic, witty, sarcastic, humorous, poignant, and sometimes sad.
A few passages that really struck me:
"The massive gulf separating the pained from the non-pained can be summed up in one question: 'Have you tried yoga?' ... This is both trying to get a handle on an unfixable tornado and, unfortunately, minimizing someone else's experience by implying I might be able to fix it."
If you just tried yoga, if you ate gluten-free, if you slept with your head elevated, if you drank apple cider vinegar and tumeric, if you just tried harder...
A few years ago, I was diagnosed with Irritable Bowel Syndrome (IBS). This is something that affects different people's digestive systems in different ways, so there's no cure-all. You basically just have to figure out what you can eat and what you can't. I spent two years diligently writing down every single thing I ate, when I ate it, and what it did to my body (I have the notebooks, but you don't wanna read them!). My hope was that this would be enlightening not only on the stomach and intestine front, but that I might gain some insight into what caused my headaches. I did elimination diets, and yoga 4x a week, and exercised, and cut out alcohol and coffee and a lot of other delicious stuff, and, and, and... eventually found a balance that works for my belly. But not for my head. I have seen my GM, an ENT, a neurologist, acupuncturists, a nutritionist, masseurs, a biofeedback specialist, and probably more that I'm forgetting. As Huber puts it, pain is a "weird project you have to manage in addition to everything else you already have going on," and, frankly, I'm so damn tired of seeking out answers.
"...the mysterious gap between subjective experience and appearance. How can one be in pain and still walk around and function?"
How many times I have wished my headaches made a noise or emitted a fiery red light, or that I could just invite you in, somehow, so you could feel what I feel - just for a few minutes! Just enough to experience what "functioning" feels like when my head hurts so badly I want to scoop out all the muscles and tendons and nerve endings and both eyeballs, and leave them somewhere to chill. Preferably in a dark, cool room, under heavy blankets. And please bring me tea and a snack.
"We are often asked to rate our pain on a 1 to 10 scale. I always get confused by this instrument, partly because I don't know what each level means. Is 1 'no pain,' and would 10 be 'the worst pain imaginable,' such as being burned alive or torn limb from limb?"
YES. Yes. I never know what to say to this question from doctors. I remember once being asked by a therapist how I would rate my pain in that moment, and I said I supposed it was a six. She said, "Why the word suppose?" I said, "Well, I don't even know what a 10 would feel like... I mean, I've never given birth - is that a 10? I've never been shot or stabbed. That's probably a 10!" She told me I was overthinking it. "On a scale of 1 to 10 of the pain you've ever experienced, how do you feel today?" But it still felt (feels) like a hard question to answer.
I MUCH prefer the 1 - 21 pain scale that Huber has created, with markers that range from, "God, why am I so bitchy? Oh, wait - I'm in a sort of grinding, background-noise, world-clenching box of pain just beneath the edge of my conscious," to "I can't read. The sentences are too hard. Remember when books?" I might need to print this scale out and point to a number the next time I'm asked.
Ok, well, this was a sort of rant-y post. More venting than reviewing, huh? I will say that the only criticism I have is that because it is a selection of essays, some of which previously appeared in other publications, there was some repetition of stories or descriptions from one to another. I imagine that if I had read this collection over a greater period of time this wouldn't have bothered me, but since I read it all in one go, I noticed it. Mildly distracting, but not annoying. I liked some essays more than others, but overall it is an easy book to recommend to anyone with or curious about the world of chronic pain.
P.S. If you like the sound of this one I would also highly recommend Disfigured: On Fairy Tales, Disability, and Making Space, by Amanda Leduc and The Empathy Exams, by Leslie Jamison.
UP NEXT: Silver Sparrow, by Tayari Jones
