Some months ago, a phone conversation with my BlogHer colleague Rita Arens turned toward my experience of having ankylosing spondylitis, an arthritic condition that froze my spine over the course of 30 years, first into a ramrod pole and now into a shepherd's crook. With her encouragement, I jabbered on about how, along the way, I've loved and lost, borne and raised two children, managed a career and had bi-lateral hip replacements - two surgeries - a week apart, followed by single doses of radiation. Then Rita suggested that my story would be a good addition to the "Own Your Beauty" series.
That shut me up.
I don't write about AS. I haven't really had the words. And talk about it in the context of a conversation about beauty? Beauty has been a vexed notion for me all my life. Being born into a striving black family meant focusing on achievement, not beauty. Coming of age in the 1970s, of course, I was black and proud, owned a copy of Our Bodies, Ourselves, and read Essence magazine cover to cover.
But I didn't have much of the socialization into beauty culture that its assumed American women go through. My friends and most of my female relatives don't wear make-up. They like nice clothes but don't obsess about them, and it's only with the arrival of my daughter's generation that I've heard any of them squeal about a pair of shoes.
Ankylosing spondylitis robbed me of the one thing I'd always considered foundational to being beautiful: erect posture. When I was at my most bitter and self-pitying, it seemed to me that AS made a proud black woman bend like a swaybacked Georgia mule. When the condition started to remold my body during my late 20s and 30s, I started to feel walled off from other women. I gradually lost the physical ability to do simple things women do to make myself look presentable and professional - much less attractive.
I once had a friendly relationship with my body. As a teenager, I had worked it into a fairly athletic condition using yoga, calisthenics, and weights. I loved the way my legs pumped and my lungs filled when I rode a bike. I loved the way my body flowed, bumped and swiveled to music. And yes, there was a time that I enjoyed the way it looked in a bathing suit and let me slice and kick my way across a swimming pool. In other words,I liked my body as much for what I could make it do as for the way it looked. Then ankylosing spondylitis started locking my vertebrae, sapping my energy and turning me into a woman who hunched like the hated teacher in that 90s cartoon, "Recess" and moved (to my mind) like Lon Chaney in the Hunchback of Notre Dame. I felt betrayed. Like Job, I wanted God to tell me what I had done to deserve this.
It would take a few years before I got off my high horse and acknowledged that there was nothing special about me that should make me exempt from illness or disability. Why me? Why not me? And by now, I knew plenty of people who would have been happy to have had the 29 years I'd had of being able-bodied. I also knew that there was plenty that this body could still do, if I treated it right. And so, I sought my body's forgiveness, and we've reached a kind of friendship again where I do my best to keep it fed, exercised, medicated and rested, and it does its best to keep me as upright as it can ...
So I can look at my body in a mirror with respect, and even care, but beauty? What does that mean for me, anyway? Around the time I turned 50, I joined Facebook. Over the next couple of years, I scanned and posted just about every picture I found of myself, from toddlerhood through middle age. Part of me wanted to tell the world that I hadn't always looked like this. When old school friends posted their own pictures of me from college, I snapped them up for my profile. Part of me wanted my children to see what Mommy used to look like.
What amused and surprised me was the number of male friends - some of whom had been objects of my silent affection in college - who commented on how beautiful I was in those old photos. Of course, they never gave me a second glance when I actually looked liked that. A young woman grows prettier in the nostalgic mind of a middle-aged man, I learned.
My body had become so alien to me for so long that I had ceased to think of it as anything to which one could attach beauty or ugliness - certainly nothing like sexuality. It's not that I ceased to be a sexual being, that's just part of being human. It's that I had to find a new way to think of myself as a sexual being, since my body didn't function the way it once had. In those days, my body was a conveyance for my senses, and a means of doing the work I had to do to get my children grown. It was a thing apart from me.
I knew of others who had been forced to make similar adjustments. As a young woman, I worked for a comprehensive cancer center as a lay counselor and newsletter editor. In the course of that job, I learned a bit about sexuality and body image counseling for cancer patients. I worked with people coping with the loss of breasts, testicles, limbs, or the sudden presence of colostomy bags.
However, psychosocial support for ankylosing spondylitis patients is limited, because it is a relatively rare condition. I was diagnosed in 1986, and I didn't meet another woman with the condition until 2003. I still haven't met another woman who has dealt with AS during a pregnancy. There are now some online support groups, but the one thing I learned is that everyone's experience with this condition is completely different.
I told a friend that I later realized that part of what I was doing was trying to see the changes in my own body over time - to make me real to me. For so long, I had felt like this able-bodied woman trapped inside this alien shell that looked like me. Seeing the photos over the years helped me absorb the truth that the body I had once had, the one that pressed its strength against the world, danced in moonlight, and rose with the dawn to suckle my first born - that body had been transformed. What has replaced it may not be as graceful on the outside, but it has its own rough-hewn appeal. It endures. it holds off the ravages of time so I can love a bit longer and learn a bit more. And it still lets me dance.
Today, my children are grown, my career is in a satisfying place and I've grieved enough to know that life is precious and meant to be savored, even when it doesn't deal you the cards you expected or wanted. So I suppose, in that sense, I can own up to a kind of beauty. Yes, I can.
- Spondylitis Association of America
- SAA Women's Health page
- Abstract of 2010 Austrian study on Body Image in Patients With Ankylosing Spondylitis
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