Thursday, May 29, 2014

Living with Chronic Pain


I can't write about the book I recently finished and liked so much, Lynne Greenberg's The Body Broken, without going into my own experience of chronic pain, which is why I got interested in her book. I've grappled with sharing this story, because I know it will make for an unusually long post, but alas, I can see no better way to do it, so here goes.

At nineteen, Lynne Greenberg broke her neck in a bad car accident. Thankfully, it healed, on the surface at least, and for twenty years she was able to lead a normal life. Then, all of a sudden, she started suffering from terrible head aches, and they haven't gone away since. How does one live with that? That is the central question of her memoir.

I lived with chronic pain for 18 months of my life. Chronic pain, Lynne Greenberg clarifies, is defined as "pain that lasts for several months." Mine came on gradually as a burning in my right biceps. Soon my whole upper right arm and shoulder were hurting, and yet, in the early days, I, like Lynne Greenberg and apparently so many other pain sufferers, ignored it. My youngest child was barely six months old at the time and suffering a cold. He'd sit on my forearm, his head resting on my shoulder. He would only sleep in that upright position, and I, thankful for the peace and quiet, kept my arm bent, despite the burning pain. What was a bit of pain when I could lean into the stacked-up pillows and close my eyes for a few minutes?

Thus began my first bout of unrelenting pain. It built slowly, gnawing at me until one night it squeezed the tears out of my eyes because it wouldn't go away. My husband said, "You gotta see a doctor." Thus also began the quest for a diagnosis. As in Lynne Greenberg's case, a diagnosis as to what was actually causing the pain proved elusive. I had full range of motion in my shoulder; no particular movement caused more pain. No particular position mitigated the pain either. An MRI revealed no torn tendon nor debris in the shoulder joint. Surgery was therefore no solution. The doctors oscillated between rotator cuff injury, tendonitis, or bursitis. I was still breast-feeding my son at the time, so I couldn't take any of the major painkillers, which, in retrospect, might have been a blessing. They did give me Celebrex, but that did not help. Neither did any Ibuprofen or Tylenol.

Thankfully I never dabbled in taking opioids, and thus I didn't have to deal with those side effects and possible addiction issues. Lynne Greenberg embarked on a roller coaster of trying all kinds of painkillers and combinations thereof, none of which helped in the long term. Then she had to deal with the torture of methadone withdrawal before entering a pain management clinic which in the end set her on a more sustainable path for living with pain. 

For me, and probably for anyone dealing with chronic pain, it was startling to learn that even with all the medical advances that we enjoy nowadays, there just wasn't a pill that would make my pain go away. The pain was simply there, all the time. Some days I wished I could crawl under it. I'd lay on my left side, resting against the back of the couch, a huge ice pack on my right shoulder. If I could just hide down there, I thought, and have the pain hover above me. Lynne Greenberg talks about the lost months of her "first year a.p." (after pain) that were spent laying catatonic in bed, withdrawn from the world, succumbed to the pain.

While I was able to go about my daily routine, the pain was affecting how I lived. I considered every time I wanted to use my right arm. Should I lift that can from the upper shelf? Or ask my husband to do it? Should I pick up that piece of paper from the floor? Pushing a door open became an obstacle, so did lifting my purse from the car's passenger seat, or scrubbing dishes in the sink. I started ignoring things that should have been picked up. I started understanding why for an obese relative it was simply too much of a chore to pick up wrappers that tumble to the ground. Like him, I now let stuff fall where it may. I learned to ignore the littered floor, and I learned that it apparently didn't bother anybody except me and our cleaning lady.

When I saw people pushing down the hatch back of their car, I wondered whether that was indeed as easy for them as it seemed to be, or whether, like me, they were hurting. That's one thing about pain, or at least this kind of pain: It's invisible. I didn't have an arm in a cast announcing to the world that I had a broken part. I started understanding why others, who I'd been told were in constant pain, were nasty people most of the time. It cost me enormous energy to function normally, to go to work, fix dinner, get the laundry going and tuck kids into bed. Often I was snippy. How many times did my kids hear, "I can't do this, my arm hurts." We didn't go sledding that winter because Mommy's arm hurt.

As the months went on, I started doubting that my arm would ever heal. I felt myself crumbling under the pain. The pain was always, always, on. There was a constant sadness and aggression in me. At my sister's instigation, I finally saw my chiropractor. Initially his treatments, mainly acupressure, and the exercises he prescribed, hurt even more. All the little muscles in my shoulder had to learn to do their job to support the joint, he said. He also gave me ultrasound to bring down the inflammation, and that, while hot, felt good. He told me that this ailment was typical of volley ball players, acrobats and, guess what? - young mothers. I only trusted his advice because I'd known him for a long time and he'd always fixed my back, so I soldiered on.

Unlike Lynne Greenberg, who had to learn to live with pain all the time, my pain did go away after six months. It seeped away quietly until I realized I wasn't under its constant spell anymore. Ever since, I do have a better appreciation for my body working well and for taking care of it. Nevertheless, I experienced two more episodes of the same pain; lifting a too-heavy weight and rowing without any preparation set the shoulder off again, and I was in for another six months of pain. And even though I knew from my first experience that the pain would hopefully go away again, I had my dark moments of impatience with the long healing process. So how, I wondered, does someone live whose pain never goes away?

Lynne Greenberg says, in her epilogue, that "the most absorbing relationship of my life, unfortunate to admit, is still pain." How did she learn to reclaim her life after the surgeries, the nerve injections, the myriad of painkillers and treatments, the stay in the clinic? She shares what helps her, what she learned to do: poetry helps (along the way I got a major lesson in poetry appreciation from her), so does exercise to release endorphins, diversion (hanging out with friends, watching her son dance). She still needs the injections to deal with pain spikes, and she knows whatever remedies help her manage today, might not help her tomorrow.

I loved this book because she so honestly shared her journey of sheer stupefaction at the sudden shift in her life, her rage at not getting her old life back, her desperate search for anything, anything at all that would make the pain go away, and her slow coming to terms with the fact that she'd have to live with this, and figuring out how to do it. When the pain first hit, she was wrapping up ten years of research on Milton's Paradise Lost. She says herself that she probably will never be able to write that book, but I am glad that she was able to write The Body Broken. As I said in my earlier post, it was one of those books I never wanted to end, even though I sincerely wish for her pain to come to an end, and if not that, then I wish her all the strength in the world to bear it as elegantly as she wrote about it in this carefully wrought memoir.



8 comments:

  1. To understand what it's like to live with constant pain, you have to have endured it yourself. I truly believe that those who have lived with longtime pain learn a great deal. It's a hard lesson on many small things in life, but it's there. I think many people will be able to relate to this post, Annette. We probably have no idea how many people we pass on the street or grocery store aisle are living with pain. "invisible' as you said. Your post makes me want to read Lynne Greenberg's book.

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    1. Nancy, thanks. I think you would really like Greenberg's book.

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  2. My mother had it- arthritis was a constant companion in the last twenty or so years of her life.

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    1. William - so sorry to hear that about your mom, that must have been incredibly hard.

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  3. I remember chasing around pain for a couple of years. Like with you, it started as a numbness or tingling. Before long I couldn't lift anything. I couldn't sleep. I couldn't accomplish anything in my days. Some days I couldn't even turn my head to safely back out of a parking space. I had good doctors and physical therapists, but we couldn't locate the source. I had the massive cortisone injections in my neck, laser, electrostimulation, chiropractor, but nothing solved the problem and meanwhile the pain and weakness spread. Finally, a new doctor I met with said he wasn't going to do anything until I first saw a neurologist (the one doctor I hadn't seen). Surprise surprise. The neuro said my neck was disintegrating so much that it was a wonder I was still standing. He operated on me and built me a new neck. The next morning when I woke up all the pain was gone. Nada. Zip. However, by then the years of pain had caused my fascia in the neck, trapezius, and rhomboid areas had spent so many years spasming from pain that it took a couple more years for that pain to go away.

    I learned a lot about how my body works in the process, so now with arthritis, torn rotators, disintegrating shoulder, etc I know what exercise and self-treatments minimize pain. One good thing about this grueling experience was that I gained a feeling of more control over this thing called "aging." However, I never really succeeded in getting my husband to understand how chronic pain could drag me down. I always knew that in the back of his mind he was thinking it was mostly in my head or I was just using it as an excuse for not doing stuff.

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    1. Julie, I'm sorry to learn about your ordeal, yet glad to hear you finally found the right treatment to get rid of the pain. Indeed, as our bodies age, we have to learn how to manage those weak spots that start to manifest themselves.

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  4. Thanks for sharing your experience. It makes me think of the quote: "Be kind, for everyone you meet is fighting a hard battle."

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