I asked my dermatologist when he last saw a case of dermatomyositis. He said a year ago. A little kid came in with it.
Picturing a tiny human being suffering as I am suffering is enough to raise one’s blood pressure and turn one’s face red.
Most children have such sensitive skin and so little muscle to begin with, I can only imagine how he must feel—burning, itching, being teased at school.
To anyone else out there suffering: You are no more your disorder or disease than I am mine. We are humans, not monsters. And we must love ourselves as we are.
When I was twelve, my pediatrician noticed a curve in my spine. Fast forward three years: the curve became a hunch. Add in my dorky green glasses, middle school levels of self-esteem, and grades our teachers posted on the wall (“anonymously” by number, but everyone knew) other kids could only envy, and I was ripe for ridicule, the proverbial wounded gazelle on the Serengeti. Two kids nicknamed me hunchback. My own sisters called me Quasimodo.
Despite being close to six feet tall before reaching high school, my Scheuermann’s disease left me weak and deformed. I played nose tackle on one of the eighth-grade intramural football team, but I couldn’t push anyone off the line. Despite loving music and being one of the best trumpeters in school, I quit after two days of band camp because I refused to be yelled at by my section leader, assistant section leader, drum major, and the martinet of a band director for a physical deformity I never asked to have.
High school eventually improved as I grew and added muscle during cross-country practice. After all, nobody is going to pick on someone who stands half a foot above them. But scars like that never fade. Time doesn’t heal all wounds.
A kid covered in rashes from dermatomyositis looks like a leper victim. No doubt other children believe him to be contagious. Ignorant parents are equally concerned. He becomes an outcast.
We want to be angry for the suffering of innocents, but at what or whom? We blame abuse on bad parenting, but who deserves to be chastised when a seven-year-old develops an autoimmune disorder?
I imagine him still. I have not seen his face. I know not his name. But I see him now—as clearly as I see the thickened, scaly skin on my left arm, and I wonder if he sees as I see, if he feels as I feel, if kids are as cruel in 2018 as they were in 1998.
Is he, like me, tired all the time but unable to sleep? Or is that a symptom reserved for an adult hopped up on caffeine, workout supplements, steroids, and stimulants for ADHD?
Does he, a small boy, contemplate his own mortality and he waits for modern medicine’s miracles? Or is like seven-year-old me, happy and content building pirate ships from Legos as he looks forward to spring breaks, summers, and turning eight?
Childhood traumas hurt. But we can work past them. And with the right attitude (and help from friends and therapists), you see what you never saw before.
I wish thirty-something me could have told teenaged me that girls tease you when they like you. I wish thirty-something me could have told teenaged me some things you shrug off and others you just don’t have to put up with.
But would my life be the same? Would I be who I am today without those wounds, without those hurtful words? Would I be able to persevere through my latest genetic disease if I had not already conquered two?
I may never know who my doctor’s other dermatomyositis patient is. But if he’s out there, now or ten years from now, reading this, I hope he remembers as I so often remind myself: He is no more his disease than I am mine. We are humans, not monsters. And we must love ourselves as we are.
