A Rough-Hewn Kind of Beauty

This was originally published on BlogHer.com in 2011. It has also been reprinted in the magazine for the Spondylitis Association of America. It is being republished here because changes in the ownership of BlogHer have resulted in content created on that platform becoming inaccessible.

Me as a toddler, bride, and in middle age.

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 mainstream beauty culture that it’s 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 themselves look presentable and professional – much less attractive. My hair, clothing, and footwear choices were determined more by what I could manage than what I preferred.

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.

Comments

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jennyfoo 5 pts

I was diagnosed with AS 3 years ago. I’ve got 4 kids ages 3-13. It’s been very difficult to accept that my old supermom body & even brain just aren’t capable of doing everything any more. I’m still struggling to accept the limitations this disease has put on me. It’s very hard. I keep fighting for more, hoping something else will be my miracle cure, but in 3 years, I’ve just gotten worse. It’s difficult for me to not be able to do the things I want with my kids & husband. I’ve always been a stubborn overachiever. My family & friends were so concerned when I adopted a drug addicted baby boy from foster care. I was so determined to show them I could do it, that I adopted 2 more, a girl, then another boy. I’m now raising 4 wonderful kids who all have special needs, & I guess so do I. Somehow we make do.

Your story was an inspiration to me. I hope that some day I will be able to accept what AS has done to me, but for now, I’m fighting it with all I’ve got. I’m still young(34), I’ve got young kids. I fight for them.

hlab27 5 pts

I am just 36 but already fed up of this life. It’s so painful. I have seen almost all renowned rheumys in the US. There is no cure for this disease. This disease reminds me everyday, morning and evening, that life is beautiful but there is nothing that I can do. All I can do is fret upon my bad luck.

Very beautiful article! A source of inspiration for people like me! Thanks for sharing your story.

Regards

SSA

shura9123 5 pts

Thank you so much for sharing your story. It reminds us of our humanity,and what is increasingly important, and that is the truest of beauty that lies inside our souls. You are so beautiful and inspirational and I will share your story…they’re are many who can learn from your life lessons.

SeasideMaestrina 5 pts

My father has also undergone a physical transformation due to AS. He was a football and baseball player, an active student through college and graduate school around military service and engineering research. Now, he is an engineering consultant who struggles to find comfort just sitting, much less actively standing and moving around, in the lab where he works. He’s an involved, loving and interested grandfather with a reputation as the “project guy” rather than the “swim and throw the ball guy” because a comfortable seated position at the kitchen table is the best and only way he can participate in things with them. My memories of learning to throw balls, swim, run, play games, are an identity my children will never know of him. I am not sad for their loss; I am sad for mine. It is his hope, as it is mine, that this legacy is not shared with those children, so they never know this transformation the way he, and you, have.

Kim Pearson 6 pts

From your lips to God’s ears! Thank you so much for sharing your story. I wish your father and your family much joy. SeasideMaestrina

Elin 5 pts

Kim, Thank you for writing this! What a beautiful, inspiring, and honest article! I know the spondylitis community, as well as anyone who’s had to struggle with the ‘relationship with their body’ as you put it, will find much here to draw strength from. Thank you for reminding us what grace looks like.

Elin Aslanyan

Spondylitis Association of America

Kim Pearson 6 pts

Wow, it’s great to hear from someone from the SAA! Thank you for your words and for all the good work you do. How cool would it be to see people who look like us in women’s magazines or other media? Of all of the unexpected pleasures of having written this post, one of the greatest is hearing from others with AS who feel that I’ve helped them. Thanks, again. Elin

bereccah 5 pts

This is an amazing post. I wish there was a way to tell you, a perfect stranger, how proud I am of you as a person without it sounding weird. Oh well, I’ll just take my chances. 😉 Thank you very much for sharing.

Kim Pearson 6 pts

Not weird at all. I’m grateful for your words. Thank you. bereccah

Eve1 5 pts

Thank you for the wonderful blog! Sharing your perspective of life and how you balance everything with understanding and compassion for your self is wonderful. You have “grace” which is a rare atribute to find in many people.

Kim Pearson 6 pts

Thank you. Eve1

Moni86 5 pts

“…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.” Thanks for this beautiful post. It takes a lot to share something so personal and to get that to that point in your life where you can be at peace with your condition. I’ve just forwarded it to a dear friend of mine who at the ripe age of 25 was recently diagnosed with MS. Hope this will post will be an even greater inspiration to her.

Kim Pearson 6 pts

Moni86 Thank you. I’m honored to hear that you think my words might help your friend. I am sorry to hear of her diagnosis. I wish love and light to you both.

MommyRachelle 5 pts

I’m in tears right now because I know how very difficult it is to share something about yourself so candidly. You are, indeed, a beacon of strength that has a beautiful outlook on accepting all life throws at you and discovering a personal friendship with yourself (self worth). Beautifully written.

Kim Pearson 6 pts

Thank you. I think the biggest challenge has been to plumb the layers until I am really being honest. Part of the reason I used to worry about writing about this because I did not want to violate my family’s privacy or stress them out by expressing feelings that would make them sad, and that they couldn’t fix. I am fortunate, especially, in that my children are very supportive of anything I do that gives me greater agency in confronting this illness. It is yet another way in which I am blessed. MommyRachelle

Wordologist 5 pts

Kim, I remember the day when I went to see you after the strange phone call about how you couldn’t move and had to go to the hospital. We both were young then. Little did we know that you would be a template for living with a disability. Little I know that when my turn came and I got crushed to the mat by a disability-fibromyalgia that I looked to you as a role model to tell me keep trying and to snatch back pieces of my life. So what we both had to wear sensible shoes or regard each staircase as Mt. Everest or use electric scooters while doing life’s journey.You helped me decide to climb and drive it anyway. Thank you for being the scout. Thank you for leaving the markers in the wilderness, creating a trail spying out rest spots and opportunities for me and for others to follow.

Also, thank you Kim, for mentioning the task that making friends with your body isn’t easy. It always remembers the arrogance that you assumed it would keep on doing what it’s always done with no complaint. But making a peace treaty can be done and if you can do right, sometimes your body will allow you to dance the electric slide.

Kim Pearson 6 pts

Wordologist No fair making me cry. I am very proud of you for the strides you have made and are making. Love you old friend.

Kim Pearson 6 pts

And PS – yes, I remember that time and many others. Thank you for all of your help, advice, support and hugs through the years. Wordologist

DitchYourJobNow 6 pts

Wow. That was an incredible, honest recap of the emotions you have been through in your lifetime with AS. It’s sounds cliche to say that it put things into perspective, however, just the thought of joining Facebook and putting a profile pic up is something one doesn’t think of. That must have been quite a hurdle for you. That said, I am honored to have read this post. I am inspired with women who “feel’ the pain of life sometimes, but come out on the other side with a whole new respect and lesson learned that they can teach others. Kudos to you!

Kim Pearson 6 pts

DitchYourJobNow Thank you. I am determined to be as healthy as I can, in mind and body. This experience is showing me that I don’t have to be stoic in pursuit of that goal.

anicolosi4 5 pts

Kim,

As I told you last night–you truly are special and my hero. Thanks for sharing this.

Love,

Annie

Kim Pearson 6 pts

anicolosi4 Thank you, Annie.

bklynstacy 5 pts

So, so beautiful. The words, the life, the video! But especially the words and the fierce and proud soul that wrote them. Thank you.

Kim Pearson 6 pts

Thank you. bklynstacy

Rita Arens 7 pts

I have to say, the video is totally the best part.

Kim Pearson 6 pts

Thanks to all of you for your kind words. Gena Haskett , show them how we Philly girls do it! 😀 I have a lot of people to thank for helping me open myself to this conversation, but I should especially thank the family member who shot the video, and my daugher ja_tun and Freakwincey. which is the band that was playing. Watching the video, is what finally got me to open up, I think.

DesiValentine4 27 pts

There is profound beauty in strength – in YOUR strength. Thank you for telling us your story.

Gena Haskett 6 pts

Rock on Professor! I’m going to the BlogHer11 dance session and tap out a step or two in your honor. The over 50’s gotta represent in all aspects of life. I feel a bit sheepish. I thought you were holding the camera and then it hit me that you were really dancing.

Too cool for school, it is unquestionable that you rule!