I'm In Pain Pretty Much All the Time

The most profound lesson I've learned from three decades of chronic pain? Never settle for less than what you want out of life -- even when it hurts.

Nov 16, 2013 at 11:00am | Leave a comment

My husband has just given our one-year-old daughter a bath. Vince lifts her from the plastic tub and wraps her in a towel, then places her on our bed to complete the rest of the post-bath routine: diaper, dress, and a few minutes of play before bed. Through all of this I sit and watch. It’s 8 pm and I lost the ability to hold my daughter hours earlier, as I do at some point every day.

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An X-ray image of my wrist that shows where the bone's been removed.


Vince bounces our dry, happy child on his lap and I glance down at my right hand. The fingers are curled inward in a position one of my surgeons called “beggar’s palm.” My hand has spent weeks at a time in this pose, which has left a strong muscle memory.

I look back at my daughter, at her dark curls jumping around her face, at her long legs and plump stomach. Her weight and height are average for her age, unlike when I was a baby; I only weighed fourteen pounds when I was a year old. I also cried and fussed relentlessly for months; my mother is convinced that I had colic, but now I wonder if perhaps I was so unpleasant because I was in pain.

I have no memories of this, of course, but I also have no memories of living without pain. Once I realized, at age seven, that not everyone had a constant ache in their head and below their eyes, my parents took me to see various specialists to get answers. While the really scary possibilities, such as a neurological disorder or a tumor, were ruled out, no firm diagnosis was ever reached. Maybe she’ll outgrow it, the doctors said. Since I was in every other respect a healthy and normal child, my parents and I accepted this vague reassurance.

I didn’t outgrow it, but I did learn to live with it. Then in college, I was taking notes when suddenly my right wrist hurt so much I dropped my pen. As a right-handed creative writing major, the initial diagnosis of carpal tunnel syndrome made sense, but the pain didn’t respond to treatment for either carpal tunnel or the diagnoses that followed. Multiple rounds of physical therapy, a pharmacy’s worth of medications, and four surgeries to repair damaged cartilage, remove part of the ulnar bone, and stabilize what remained have all also failed to significantly alleviate the pain.  Several years ago I was diagnosed with chronic fatigue syndrome, which was later revised to fibromyalgia, which was later changed to myofascial pain syndrome. The muscles in my shoulders and neck frequently go into spasm, becoming so rigid that they feel like stone.

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X-ray images of my wrist that show where the bone's been removed.


  When Vince and I first began talking about having a child, we were concerned about the effect that pregnancy could have on my health. But the specialists we consulted admitted that there was no reliable way to predict how my pain would respond to pregnancy. My ultimate decision was driven by a mix of pragmatism and impatience: tired of talking about hypotheticals and worrying about what could happen, I decided to hope for the best, prepare for the worst, and keep my OB/GYN on speed dial.

Yet my pregnancy turned out to be remarkably uneventful, save for a few days of morning sickness early on and low blood pressure in the last trimester. I had to give up muscle relaxers entirely, but was able to take low doses of my other medications. Vince and I chose to have genetic testing done, along with the standard recommended tests, but what we are really concerned about — that our daughter will develop chronic pain, too — is impossible to predict. None of my conditions have a genetic component; my daughter is more likely to inherit my love of ’90s teen dramas than she is to experience chronic pain. But my history makes it impossible not to worry when she flinches at a bright light or a sudden noise. I know that these are normal reactions, but every time I automatically think about how sudden flashes of light or loud noises always make the pain under my eyes more acute.

I’ve never been very good at describing any of my pain. I have lived with this discomfort for so long, I have lost the words to explain what it feels like. It’s as much a part of me as my brown eyes, and how would I describe the color brown to someone that’s never seen it?

But I’ll need to find those words, and probably sooner than I expect. Because one day, my daughter will ask me why her father is the one who picks her up without hesitation, who cuts up her food, who carries her when she’s tired. She will want an explanation for something that after a lifetime, I still don’t have the right words for. I can’t tell her why I began hurting or why it hasn’t stopped.
 
But I can’t deny that there are also upsides to a life that’s been turned upside down. My daughter will grow up in a household where the man does the bulk of domestic work, from cooking to ironing to vacuuming. Vince will be the one to braid her hair and tie her shoes, the one to push her on the playground swings and help her paint Easter eggs. I won’t be able to teach her how to put on lipstick or mascara, but I will be able to show her that there is beauty in scars and misshapen joints. Although I can’t lift anything heavier than a few pounds, I revel in what physical activities, especially biking and swimming, I can do. I hope to show my daughter that the true joy in exercise comes not from striving to look a certain way, but from what your body can accomplish.

But the most profound lesson I have learned from three decades of pain is to never settle for less than what you want out of life. Growing up with chronic pain has taught me not to put off what I want to do, because a year or even six months from now, it might be too hard to do it. I’ve traveled around the world, sometimes solo; I left a stable job to pursue my dream of writing full-time, even though being a writer with a severely damaged wrist often seems like the worst kind of joke.

I refuse to believe that any goal is impossible, because that would mean admitting that my ultimate goal -- to live a life of less pain -- is also impossible, and I will never accept that.

That is the upside that I most want my daughter to know: to be tenacious and stubborn, to remember that she is always stronger than her challenges, and to never doubt that the positive parts of life will always, always outweigh the negatives.