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With a Master of Fine Arts in Creative Nonfiction degree (Goucher College, August 2014), I am looking at a new phase in my life. From 1992 to 2009, I served as Founding Executive Director of Miriam's House, a residence for homeless women living with AIDS. I left this position when Chronic Migraine Disease overtook my ability to do my job. Now I hope that a writing career will both accommodate the migraines and give me a creative, productive outlet. And soon, September 4, I will launch my Inkshares author page in a bid to hit the 1,000 pre-order goal in 90  days. The book I want to publish is "Nowhere Else I Want to Be," a memoir of ten of my years at Miriam's House.

24 February 2011

Guest Post - Ellen Painter Dollar, Part One

Ellen Painter Dollar is a professional blogger, you can read her at Five Dollars and Some Common Sense.  She also posts at the Christianity Today blog for women.

When Chronic Pain is Part of the Family

Chronic pain knocked on my door for the first time on a December morning five years ago, though I didn’t realize at the time that it would eventually move right in, becoming a permanent member of my household. I was very familiar with chronic pain’s cousin, acute pain, and at first thought that’s who was visiting that winter morning.

I have a genetic bone disorder, osteogenesis imperfecta (OI); the hallmark symptom is fragile bones that easily fracture. I had about three dozen broken bones as a child, as well as many surgeries. They were all terribly painful, but the pain was blessedly temporary. As an adult, I have not broken any bones, but years of walking with an uneven gait due to bone deformities have taken a toll on my joints.

That morning, I was walking across my kitchen floor, heavily pregnant with my third baby. I felt a crunching sensation in my left knee and was blindsided by pain. I had my husband dig my crutches out of the closet and spent a few days hobbling around. I eventually ditched the crutches, but my knee was still painful. I went to an orthopedist who, freaked out by my pregnancy and maddeningly ignorant of my bone disorder, sent me away without even doing a physical exam. I limped around for several more weeks, gave birth to a gorgeous baby boy, found another orthopedist, and when my son was three months old, had surgery to repair my badly torn meniscus (a cartilage disk in the knee).

But that knee has never been the same. I had surgery again three years later to repair another tear, but the knee is still unstable and painful. My other knee began hurting more, as did my ankles, hips, and back—likely due to my overcompensating to protect the “bad” knee, combined with aging and the physically taxing work of caring for young children. For several months after my first surgery, I took a single strong pain pill (leftovers from my c-section and surgery) around dinnertime, to quiet the screeching pain enough to allow me to feed, bathe, and put my kids to bed. Finally, I went to see a physiatrist (a rehabilitation doctor who addresses physical injuries with the goal of maximizing function) and have been on prescription pain medicine ever since.

This was quite a change for me, who rarely even took Advil for daily aches and pains. The medication allows me to function well in spite of pain. But I still don’t function as well as I used to, and certainly not as well as my able-bodied peers (or as theologian Hans Reinders would say, my “temporarily able-bodied” peers). The hardest part of becoming a “pain patient” (besides actual pain and the continual need to prove to doctors, medical assistants, and pharmacists that I am not a “drug seeker”) is confronting assumptions, rampant in the wider culture, my community, and my own brain, about what relatively well-off, educated, loving mothers can and should do.

The cultural ideal of the “good mother,” and the pressure many modern mothers feel as they try (and fail) to live up to the ideal, has been a popular topic for female writers in recent years (see, for example, Ayelet Waldman’s Bad Mother or Judith Warner’s Perfect Madness). Many self- and culturally aware moms could easily name the ways they don’t fit the ideal—their cluttered house is not beautifully organized into color-coded bins, they don’t plan elaborate themed birthday parties, they yell, they hate playing board games and going to the playground, they let the kids watch TV and snack on cookies. In parenthood as well as work, home, and community, none of us can do everything well, or even mediocre-ly, all the time. So we pick and choose our battles, spending our time and energy on the things most important to us and learning (not always easily) to let the other stuff go.

Here is the difference, though, for someone with chronic pain. I cannot always pick and choose where to spend my energy. Sometimes, I simply cannot do things I would like to do, even things I think are important, because if I push myself too hard, I end up hurting more, exhausting myself, and courting further injury.
This inability to do, this inability to choose what to do, certainly affects my parenting. I could not, for example, pace with a fussy baby for hours because I couldn’t stand and walk for that long, particularly with an infant in my arms. I can’t carry a child over 20 pounds, and I have a five-year-old who would still very much like to be carried now and then. I can’t steady my kids on the monkey bars, play chase with them, or pull them up a hill on a sled. I sometimes beg off pushing them on the swings, doing their bedtime routine, or going swimming on summer camping trips because I’m just too physically worn out. And most of the time, I am okay with that, as are my kids. Most of the time.

But it’s not only my motherhood that is affected by chronic pain. It’s everything, every area of life. Learning to define and then accept limits on what I can do is a painful process, as I disappoint myself and others in myriad ways. In my next post, I’ll explore one, perhaps surprising, way that chronic pain has constrained my daily choices, and the hard spiritual truth that has come as a result.

Next Post: It’s Not Easy Being Green When You’re in Pain

1 comment:

  1. Thanks for this post. I've been lucky enough to not have to deal with this, but as the person you quoted says, most of us are only *temporarily* able-bodied. Usually that temporary state coincides with the raising of our children, and sometimes even extends to let us rough-house with our grandkids. I am really sorry that chronic pain affects your capacity to mother in the ways you want to . . . but you are clearly a great mom in that you do want to be such a hands-on parent.

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