Thursday, December 15, 2016

The Fibromyalgia Autobiography: We Are the Brave

I don’t know what to do or even how to write. The pain is so bad that it permeates every second of every day; I get no respite. If I thoroughly distract myself with something consuming, such as drawing every fibre and curve of the poinsettia plant on the table, I can sometimes, most fleetingly, eliminate the pain from my top-of-mind consciousness. Even then, I know it’s there. I know it’s glowering at me, demanding that attention must be paid. How dare I presume to ignore it. It should know that I’m most decidedly its prisoner, and ignoring it is impossible. I’ve merely placed it in the second shelf of things I cannot forget.

Imagine internally repeating a word or a string of digits, something you know intimately well, over and over and over. Your name. The numbers 4 8 15 16 23 42. It would seem like madness. So does the word I repeat, but it is more of a tome than a word, a dull and singular autobiography that tells but one incessant story. I repeat it while making coffee, while reading Prince Caspian to my eight-year-old son, while hugging my 11-year-old son goodnight, while I’m making a joke to my 13-year-old son about the “sentient basketball” his kindly and generous godfather gifted him for Christmas. 

(STOP. Okay, the sentient basketball is this basketball that links with an app on your smartphone and it tracks all the shots you take and calculates the trajectory of the ball and it’s seriously smarter than all of you. I have suggested that it may devolve and start shouting things at my son such as “Missed the hoop AGAIN. Sad! Loser!” by which point it will have detained our entire family in a special “camp” while it bounces recklessly across a keyboard linked to its Twitter feed. But I digress.)

The story in my head has the word “pain” is embedded in the title of every chapter, in every monotonous sentence, and in the cliffhanger at chapter’s end. Synonyms for “pain” could of course be employed here: ache, agony, spasm, torment, misery, distress. I’m afraid that, while in pain, I’m not even clever enough to call upon any of these vocabulary words. It’s all simply pain. It makes for extremely dull reading: “This book sucks. One star, but I’d give it a zero if I could! Sad! Loser!”

(But if I were to be imaged and mapped as an electrical grid, I would be very exciting indeed. I would tell a strange story. Spasms, and flares along the knots and hubs, and bright loci, all firing, firing, firing, until the world’s end.)

Even as a prisoner of the very boring and pedestrian pain, I sometimes still think: I wonder if I made this all up. Because if I did, I can fix it. I know I can. Many doctors said it was all in my head before I was diagnosed. They could be right! I will fight like a wounded dog in a ditch to fix this. Because I have beautiful people in my life who love me, and they are counting on me to be brave and beautiful and to ignore the pain. (Sometimes, when I pass a mirror, I think the expression I wear resembles that of a hurt animal that cannot speak and dumbly wishes to be put out of its misery. My friend, the veterinary surgeon, sees this look all the time, before she expires the animal. And then I tend to think that I’m really quite good-looking. And someone this ridiculously good-looking cannot possibly be sick, right? I also have great legs and really decent biceps and fine, upstanding boobs. But I digress.)

If this is all in my head, then all I need to do is relax. Breathe more. Take some Aleve. Do yoga. Stop worrying. Swim when I can. Hot water. Pay attention to my posture. Take supplements. Use the Miracle Balls. Ahem, this is really a thing—“miracle balls” do help.) This was honestly supposed to be part of a different post, the post that listed “All the Things That Help Me With My Fibromyalgia.” I don’t want to suggest that these things don’t help! In fact, they certainly have. The problem is that they are temporary. Maybe I just need to use these remedies more. 

But just when I’m exulting in the moment of finally selecting a new “inner dialogue” volume from my shelves—perhaps its “Just Keep Moving! You Are Fantastic!” or “Bonus Energy Surprise! You Won the Fucking Lottery Today!”—I reach out and pluck out that sad, dog-eared volume on pain whose author looks like she got whacked with a cudgel studded with stabby Christmas ornaments. Whacked hard in the knees, ribs, shoulders, back, elbows, ankles, fingers, collarbones. Still smiling, wanly. Her author photo tells the whole story. She’s an absolute expert on her subject. Not many people can see her pain, because she’s smiling well enough. But I do.

It’s so very hard to choose another book.

But I will. I must.

How do we go on? People who have Fibromyalgia are in constant, sometimes unimaginable pain. Some are in worse pain than I am, which I cannot imagine. How do we even face the day? How do we read a book, or hug our children, or cook dinner, or fold the laundry? How do we commit to jobs that require us to smile at people? How do we shop for groceries and actually return our carts to the cart corrals (please tell me you do; Fibromyalgia is no excuse here.) How do we continue to stand out in the cold wind and gas up the car? How do we limp down the driveway to collect the mail? How do we sit in a chair, as I do, and type out blog posts that will garner us no favors or fame or money?

Because we are the brave. No matter how bleak it seems, we will never just read one simple story. We can acknowledge that we have read, and will read again, that dreadful autobiography: The one that I call Pain. It will always and always sit on our shelves. But it isn’t who we are. We are a great  library of poetry and truth and submarines and whelks and tangerines and fireworks and ocelots and 17th-century history and rockets to the moon. We are here for a reason, and we will be called upon when it counts. Because we already know what heartbreak feels like and we have been brave and strong for so very long. We will never give up, never stand down, never falter.  

If there is to be a resistance, I will be at the forefront. I am not scared. Why would I be? I am well-versed in pain. Maybe I could finally place that awful, boring volume called Pain way down to the fifth or sixth shelf, well below the volumes of Dignity and Honor.

Postscript: Please. Return your carts to the cart corral. Or even to the very door of the store. We aren't the kind of people who leave our carts parked upon the curb, even when we are bone-tired. The carts do tend to get away and cause mayhem.