On my desk, next to my computer screen, rests a black-and-white photo of me at age three, my braided hair in white satin ribbons. I’m wearing a plaid dress with puffed sleeves and a white Peter Pan collar, holding what I think was a stuffed toy deer, sitting in a folding chair in the back yard of our home. Like most little kids, I loved having my picture taken, and I’m grinning happily at the camera.
Not so, now. I don’t know at what point I began to hate having my picture taken. Probably sometime around the seventh grade when, like most teens, I started to feel too self-conscious about my facial flaws. Many women I know feel this way—we’re all far too aware of our imperfections in a society that values Photoshopped perfection.
But scleroderma adds a whole new level to my camera shyness. Recently, I needed an updated portrait. So I asked a friend who’s a good photographer if he would do the honors. We did the shoot outside in about 10 minutes, as he zipped through digital shot after digital shot and kept me laughing.
The next day, he sent me a set of images to review, most of me grinning at the camera. But as I scrolled through, my heart sank. Oh. My. Even after all these years with scleroderma, it is really hard to see how it has distorted my face. Friends who know me don’t notice, because I’ve had the disease for so long that the way I look is all they know.
But for me, it is still a shock. Although my skin has loosened somewhat with time, excellent medical care and a dose of serendipity, it remains abnormal. My wrinkles are not the fine lines and soft creases of my 60-plus contemporaries (even as I’m grateful to have wrinkles, because when the disease was worse in my 30’s, my face was tightening to the point that it was uncomfortable to blink). Rather, because my skin is still thickened, my wrinkles resemble corduroy welts of varying widths. My mouth is tight around my broad smile. The nostrils of my generous nose are narrow. My eyelids are too thick to open fully.
In short, I look a whole lot older and odder than I think of myself. I don’t care about the salt-and-pepper hair. I still have my teeth (well, at least, most of them). Maybe it was the natural lighting, which can be quite unforgiving. But. Wow.
One of the hardest things about this disease is how it damages your looks. It is deforming. There is just no way around it. When I look at myself in the bathroom mirror, I often am not wearing my glasses, so the impact is softened—a bit of self-delusion, perhaps, but it also makes me feel better.
The reality is, I’m always still hoping against hope that I’ll get my face back. I wonder what I’d look like without scleroderma, just normal aging. What would it be like to once again have a relaxed mouth, a nose that isn’t pinched, eyelids that open all the way? What would it be like to have gentle lines rather than deep creases?
I know this ruminating is both self-defeating and self-absorbed. Beauty is only skin deep, and all that. But there is a real loss involved here, and it takes a long time to make peace with the fact that scleroderma ages you prematurely and is so unkind to whatever lovely features you may have once had. You need to dig deep to summon self-respect and compassion for who you are, for all that you are, despite damning social standards.
In the end, I selected the most forgiving image and forwarded it on. The pictures told the truth. This is how I look. The contrast between what was and what is remains in my head, and those whom I love and who love me don’t care.
Friday evening, I sat on the living room couch as Al gave me a much-needed neck massage—too many hours at the computer. I told him about the photos. “I look so old,” I said, discouraged.
“You don’t look old to me,” he answered, softly. For some men, this would be a throwaway line. But not Al. He meant it. And that made all the difference.
Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com
Thank you for writing this blog. I loved your entry about the photo shoot. What you said is so true. It is difficult to grieve the loss of the physical self. Those loving individuals we keep near us make all the difference in the world. I’ve lived with Scleroderma for 28 years (since the age of 14). I feel like I was robbed of what should have been the best years of my life. It is difficult to look in the mirror or have pictures taken and see how the disease has ravished my body. I remember how I was before the disease hit. Who I see is now is not who I am. There is a genuine loss and grief in that. I get frustrated with people when their biggest image worry is their weekly gel manicure or the way their stylist screwed up their hair. I worry about how tight the skin on my face may get. I worry that soon I might not have any hair left to style. I look down at my hands and wonder what it would be like to have a nice manicure and pretty hands instead of the ulcers I battle. Most of all, I think that people with Scleroderma do a lot of suffering in silence. Thank you for giving a voice to all the things many of us keep inside.
Thanks, Kristine. My heart goes out to you, living with this disease since you were a teen. It is hard enough to contract scleroderma as an adult, but dealing with all of the peer pressure of teen years must have been so difficult. Living within bodies that no longer fit is one of the most difficult aspects of dealing with scleroderma. Thanks to those whom we love and who love us, our true selves can still be known and treasured. Be well.