“My greatest accomplishment is that I didn’t let [anything] be affected by this. It happened, I dealt with it. I realized, ‘Okay, this is my new normal.’… When I look back on [the illness, the surgery, the recovery] now, I feel fondness, like thinking of an old friend.”
Diagnosed with severe scoliosis in the fourth grade, Stephanie doesn’t consider herself disabled. Her story, which includes years of wearing a plaster cast, held tight round her torso by Velcro straps (imagine the most torturous corset and then make it bigger and heavier and hotter and a little stinkier) and an intense spinal fusion surgery*, she claims is actually comical and has given her a self-confidence she might otherwise not have had. It is this self-confidence, this healthy, totally not arrogant self-love that is difficult to find in most people, but especially a woman, and especially a woman many would label the dreaded word “disabled”. I am inspired by her strong sense of self and that she didn’t have any qualms or hesitations about getting topless for our shoot so I could photograph her bare back, a crooked (like a right-handed person writing with her left hand), silky scar drawn from the nape of her neck down to her sacrum. The scar, which she refers to as a mark of pride, is all the evidence left from that time in her life. Her parents, having loathed watching their little girl squeeze into it before bed every night, then toss and turn, sweaty and uncomfortable until she could bare it no longer and would, half asleep, pull loose the Velcro straps and toss the heavy cast to the floor with a thud by early morning, threw away her plaster torso cast long ago. A bummer, because I’m curious to see it, feel it, even have Stephanie try it on again in all its hot pink glory. I don’t doubt for a moment that she would have put effort into finding the cast and tried it on for size for me had it still existed; she is the most down-to-earth, most fun-loving, loud-laughing, do-anything-for-a-friend, warm, crazy intelligent young woman. I know because Stephanie and I go way back; in college she was my Chief Copy Editor for the University of San Francisco’s school newspaper The Foghorn and, when she graduated, I was promoted to fill her shoes. Even then she exuded a confidence and security that only the best of us coeds could dream of. I had no idea she had scoliosis, and if our long days and late nights sitting in the Foghorn editing office (read: cubicle) were painful for her, she never let on. Fast forward over a decade and here we are, she giving me yet another valuable lesson, but instead of one in journalism, it was a lesson in beauty that transcends anything you’d find in the pages of Cosmo or TeenVogue. She admits that she’s never directly thought about her self-confidence, but says that after the plaster cast, the missed days of school, the trips to and from the hospital, the surgery, the waking up in post-op and feeling like her “back was on fire”, the recovery, the learning how to walk again as a 14-year-old**, and the dis-ease ever since really put things like the teenage drama into perspective. In comparison, “none of that really mattered to me,” she shrugs. It seems that her reverence for the scar and the trauma that she experienced has continued to grow. “I’m actually bummed because as I get older, the scar begins to fade. I don’t want it to go away. It’s part of me.” I begin to wonder about the unfortunate truth that society in general tends to mistrust that someone actually has a disability unless that disability is visible. I wonder if Stephanie’s fading scar is the last visual proof that she still suffers from chronic pain from the back surgery, as if she will no longer have something to reference when sitting in Disabled Seating on public transportation during her excruciating hour-long commute to work and back home again. She herself admits that, totally well-intentioned, she’s guilty of asking “able looking” people to give up their seats for individuals who are more visibly “disabled”, i.e. the elderly, those with crutches, pregnant women, etc. But, acknowledging the irony, she quickly catches herself, “Wait a minute, I don’t know what that 30-something guy is feeling today. His back might hurt as badly as mine does.” I suppose even those with disabilities weren’t granted the ability to smell our own, try as we might, and, even if we could, there isn’t one right way to help a disabled person, nor should one assume that that person needs help to begin with. But that’s a very long, complex analysis that I’ll save for a different essay. You’re welcome.
We spend much of our time gabbing about fashion***, beauty, sexuality, feminism which then ultimately leads to the topic of the coolest female superpower, motherhood. I was touched by her recounting of her mother’s love and support of her, as not all – not many – young people with disabilities tend to have the most supportive parents. “My mom was with me every day [before, during, and after the surgery]. She was there helping me to get up, to get down, to bathe. She was there the whole time.” She pauses to think about that for a second, as if the math doesn’t quite add up. “She had a full-time job. But she was there for me. The. Entire. Time.” Stephanie continues to share her hopes that she be just like her mother when she has children of her own, though pregnancy and the physicality of motherhood are relatively large concerns. “I have hip problems now. My back hurts when I sit or stand for too long. What is [my body] going to feel like when I’ve gained 30 lbs. and my back is arched and my center of gravity has changed? We actually moved into this house so that we could be near family who could help us, who could help me. I don’t really know what I’m going to do.” As I write this narrative, about a week after our interview together, I wince for my aching wrist and smarting ego. Earlier today I took a pretty nasty tumble while holding my youngest daughter and, though we’re both totally fine if not a little banged up, I officially realized my worst nightmare. I have never felt more disabled in my life. But here I am, life having continued, and there is my daughter, smearing pomegranate seeds into the rug as she smiles at me like nothing happened. So, Stephanie, if you’re reading this, remember that you are no stranger to pain, to a challenge, to your body disappointing – or surprising – you. It’ll all happen, and it will happen over and over again. You’ll find love and support in people like your mother and husband; you’ll find inspiration in your child; you’ll conjure up strength from the deepest, darkest parts of you and you’ll pick yourself up, like you’ve done many times before.
*In a spinal fusion, the curved vertebrae are fused together so that they heal into a single, solid bone. This will stop growth completely in the abnormal segment of the spine and prevent the curve from getting worse. All spinal fusions use some type of bone material (Stephanie’s doctor took pieces of her pelvis for this part), called a bone graft, to help promote the fusion. Generally, small pieces of bone are placed into the spaces between the vertebrae to be fused. The bone grows together – similar to when a broken bone heals. Metal rods are typically used to hold the spine in place until fusion happens. The rods are attached to the spine by screws, hooks, and/or wires. (Scoliosis Research Society)
**Of her eagerness to learn to walk again after the surgery, she says, “I [was] bored [just lying there]. I mean, I could only listen to Celine Dion on my walkman so much! That’s what I listened to pretty much the entire time. My aunt brought me a walkman and the Celine Dion “Power of Love” cassette tape. There weren’t CDs back then! I just remember needing to flip it, being like, ‘Oh, it’s done…gotta flip it’ over and over again. Yeah…sitting there…listening to it constantly. But that’s all I had. So, I was like, ‘Um, yeah, can I get up and walk now?’”
***As she’s engaged to be married, she’s even on the hunt for an open-backed wedding dress to show off her battle wound. Other than that, her scar or her body’s shape doesn’t ever affect the clothes she wears…except horizontal stripes. Good God, does this girl loathe stripes. She begins to show me that horizontal stripes accentuate her slightly slanted posture, actually making it look a little more like she has one enormous breast and one teeny tiny one.
Here’s Stephanie on one of the cooler side effects of her spinal fusion operation.