What It Feels Like (Part 1): Day 4 of Medical Leave

One of my great sources of irritation as a writing teacher is when students write that some topic “cannot be described.” (it’s always “cannot,” never “can’t”). Her love for her children cannot be described. My feelings when I scored the game-winning basket in the championship game cannot be described. My response is always But that’s your JOB – to describe the indescribable. I didn’t give you this assignment because it was going to be easy. Things that are EASY to describe usually aren’t very interesting to read about.

Karma exists, folks, because here I am at my kitchen table getting ready to tell you what fibromyalgia feels like. As far as I can separate the two, I will try to focus on fibromyalgia and save Multiple Traumatic Brain Injury Syndrome for another day. But there will be spillage from one overflowing bucket to the other, I think. My goal is to achieve accuracy and honesty and to understand my own body and my own pain just a little bit better when I finish writing this entry than I did before. And I want to do so without hyperbole or understatement, without glibness or sarcasm or euphemism or clichés. And I hope to use similes and metaphors sparingly – let’s say that I can use five total.

(And I’ve already wasted one on that overflowing-bucket business. Shit.)

How It Started

In November of 2007 I went to a conference in Boston with my current boss, who at the time was the Dean of Students at my school. She drove to my place the night before the conference, left her car, and rode with me to our hotel. I napped in the afternoon and woke up just a few minutes before she arrived. I was stiff, disoriented, and in pain – and as far as I recall this was a sudden change in how I felt: before the nap I just felt the kind of fatigue a teacher usually feels on a Thursday afternoon. I remember how much the lights of oncoming cars on the highway hurt my eyes and how disoriented I felt trying to decode the card I was given on the Mass Pike to determine how much toll I needed to pay. Turning around in my seat before changing lanes was agony, and I remember being aware of simple pressures like the seatbelt against my neck and the weight of my purse strap over my shoulder.

That night I soaked in the hotel’s hot tub to relieve the pain in my neck, which at the time I still interpreted as basic muscle pain, probably from sleeping in an awkward position. The hot water actually made the pain worse. By the time I went to bed, I was really scared. The next day the pain continued to rage in my neck and back and had also crept upwards into the right side of my face, searing away in a half-moon shape with one tip in my right eyebrow, the wider part of its crescent arcing across my temple and cheek, and its other tip right on the hinge of my right jaw. This crescent of pain has been one of the most consistent of my fibromyalgia symptoms over the past four years, and it has also caused the most consternation for my doctors, since this kind of pain can also indicate more serious conditions (namely lupus and M.S.) from which I have so far, fortunately, been spared. I remember drifting through the conference center at the Marriott and Westin hotels in Boston between sessions, buying overpriced Tylenol from the lobby gift shops and mulling over the many, many articles I’ve read in women’s magazines that advised readers to immediately call 911 if they were experiencing “the worst headache they had ever had” and thinking that the pain I was feeling at that time wasn’t too far off that mark.

At this time in my life, I had rarely encountered a medical problem that could not be cured by hydration. Fatigue? Drink water. Headache? Drink water. Muscle pain after a workout? Drink water and eat a banana. Want to lose weight? Drink LOTS of water. Strep throat? OK, for that one, go to the doctor. But these five scenarios do a lot to summarize my medical history at the age of 31 when I wandered from conference room to conference room wondering just how embarrassing it would be if I called 911 over a headache in front of my colleague at my new job. In keeping with this medical strategy, I carried a 1.5-liter bottle of water with me everywhere I went. Throughout that conference, I stared at my water bottle the way a Hemingway protagonist looks at God: with disbelief, betrayal, and anger. Like the Lost Generation, I was entering a world that would be governed by different rules.

Those two similes only count as one, by the way.

After that weekend in November of 2007, I have experienced very few days without pain. I have taken 14 different prescription drugs to treat this pain in some way OR to treat the side effects of the other drugs. I have been treated by doctors and other staff at nine different medical clinics, all of which claim to provide “integrative pain management” at the outset of each appointment but end up just pumping me up with more drugs. I’ve been told that fibromyalgia isn’t real and that all pain syndromes are really just food allergies and that the best cure for fibromyalgia is high doses of cough syrup and that I probably just need to get married and that everything would be better if I just slept on a different pillow. The medical establishment’s approach to fibromyalgia treatment makes my old reliance on my water bottle seem like pretty sophisticated stuff.

By the way, do you all see what I’ve done here? I set out to tell you what fibromyalgia feels like, which is damn near impossible, and proceeded to just charm you with a story. Score.

A brief recap of the years between this conference in 2007 and the true hitting-bottom that happened in January of 2012: Doctors, doctors, doctors. Drugs, drugs, drugs. Work, work, work. A lot of temper tantrums, including one in a grocery store that I am SURE is still kept in a prominent place in the company’s security archive in case it is ever needed to establish a prior history of insanity in the event of a future lawsuit. I grew used to the fact that I would always hurt. I found a great massage therapist – truly the only professional out there who has been willing BOTH to listen to what I say and to study my body for its own needs and cues (WHY is it so hard for doctors to pay attention to BOTH a patient’s mind and a patient’s body? WHY?). I basically stopped any pretense of exercising, even though I continued to enjoy it, because even after a brief walk or a light lifting session I became so physically fatigued and mentally clouded and plagued with headaches that I needed 4-5 days to even consider completing normal activities. I dropped all attempts at a social life. I started reading like a maniac: 110 books between June of 2009 and June of 2010, 125 books between June of 2010 and June of 2011, and 77 books so far this year since June of 2011, even reading through headaches because I needed something to make me feel proud of my own endurance. I resigned as a dorm parent (a role I loved) and moved into my own apartment. In the fall of 2010 I was diagnosed with Multiple Traumatic Brain Injury Syndrome, adding a helpful piece to the puzzle of why my body and mind had changed so much in the past several years and helping to explain why the right side of my head was so often the locus of my pain – but ultimately changing nothing. I resumed my earlier pastime of knitting. My cat died. My mom died. For the most part my eating habits went to shit.

And one more thing happened. I became a really good teacher. I had been a decent teacher before, sure. I could tell you what an adverb clause is and why Gatsby keeps staring at the green light and why adolescents always have to be so damn snarky. But my teaching prior to about 2008 was all substance and no soul. I could tell students how to read and how to write, but I had not yet figured out how to tell them why to read and why to write. I couldn’t see very far into my students’ souls, and I hadn’t yet learned how to open my own and allow the students to see little glimpses of what the world had done to sculpt away at who I am. My teaching back then was all about surfaces. I am planning a longer post on this subject sometime in the future, but for now let’s suffice it to say that what happened to me was similar to what Hawthorne meant when he wrote of Hester Prynne that “she was a self-ordained Sister of Mercy; or, we may rather say, the world’s heavy hand had so ordained her, when neither the world nor she looked forward to this result. The letter was the symbol of her calling. Such helpfulness was found in her – so much power to do, and power to sympathize – that many people refused to interpret the scarlet A by its original signification. They said that it meant Able; so strong was Hester Prynne, with a woman’s strength.”

Please don’t think I am taking credit for this – this whatever – that happened to my teaching while I was struggling to come to terms with my changing body and brain between 2008 and 2012. I was as surprised as everyone else, but I am grateful for whatever new capacities these experiences have given me because otherwise these past four years would have been only about deterioration. And they are about deterioration, but they are about something more too. Something has happened here: person-making. Close to the end of her life, my mom looked at me through the Alzheimer’s-tinted lenses that had become her only available way of seeing the world and asked, “When did you become such a person?” I can’t tell you when. But I can tell you how it happened.

But first I’m going to move my cursor back up to the top of this entry and add the words “Part One” after the title of this post. And be done with it for today.

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