I don’t remember telling any of my elementary school friends that I was sick. My doctors’ appointments happened after school, and the other things I had to take care of—taking my eye drops and swallowing my horse pills, buying special lifts for my new loafers—could all be done in private. I could not run, but
the school I went to did not expect little girls to do much running. During recess, the boys hogged the soccer pitch and the girls just watched. It was fairly easy to keep the secret of being sick between me and my parents. We lived in Italy at the time, where physical disability was still associated with mental illness. I was severely pigeon-toed, and teenagers in the small village outside of Rome we lived in would walk behind me, exaggerating my walk. They’d add in crude noises and hand gestures meant to signify mental retardation. It was best to keep my illness to myself.
The year I turned eleven my world turned upside down. My parents split up, and I left Rome for my grandparents’ home in Michigan. At the same time, I started middle school, and entered the cruelest moments of puberty. As my body changed, my rheumatoid arthritis roared to life. I flared like never before. My mom went back to work fulltime; because my dad had decided to stay in Rome and renounce his parental responsibilities, my grandfather and sometimes even my teenage cousin were enlisted to drive me to doctors’ appointments. They knew by the sheer volume I kept on a weekly basis just how sick I was.
My cousin Roy, only eight years older than me, kept everything strictly professional. We never talked about what was going on during all of my appointments, which is good, because I didn’t want to. He waited patiently each time, never complained when the appointments went longer than anticipated, and played cool music on the way home. My grandfather, a perennial jokester in his late 70s, pointed out that “the old people” in the doctors’ waiting room needed the large-print Reader’s Digests. Rides with Grandpa were sprinkled with a running commentary about bad drivers, slow drivers, old drivers and anyone else in our path. Whatever bad news the doctors told me was quickly forgotten once I hopped into his Cadillac Seville.
Still, the list of things I could not do grew longer as I got older and stumbled into adolescence. As a result, people outside of the family had to be let into my circle of sickness.
Relatively inconsequential moments made me panic. My middle school held weekly assemblies during which each student sat on the ground, legs crossed, sans cushion. They remained in that position for the duration of the time it took to get through presentations and announcements, usually about an hour. I could not sit like that without having my legs cramp up. The solution was to have me sit in one of the plastic chairs that formed a semi-circle around the students, where the teachers sat. The teachers were the only ones who knew why I was sitting by their side. I was again told to tell none of my friends that I was sick, and endured the teasing that came along with sitting with the teachers.
Though kids could be cruel, the educators I had at this point in my life, when I was at my most vulnerable and self-conscious, were kind, understanding, and remarkably well-equipped to help me adapt to my new health struggles. My sixth grade homeroom teacher, Ms. Coss, listened and nodded when I told her about how I was feeling on 30 milligrams of prednisone, how my pants were tight around my waist and my face was getting puffy. Ms. Coss had us write in our journals every day, and I filled mine with clinical descriptions of the steroid injections I was getting, which required my eye doctor to inject the whites of my eyes while I was wide awake, and the knee drainings that were becoming far too frequent.
“You’re very tough, Katherine,” she said, making feel better without negating my reality.
Mr. Steele, my science and math teacher, was also my PE instructor. When every other kid in my class was running around the gym to warm up, he found other things for me to do. He was the first person to discover that I was actually quite athletic—I couldn’t run, but I could do sit-ups and throw a ball, and I came to life whenever there was competition involved. I especially loved being better than the boys . . . at anything.
Mr. Steele coached the middle school girls’ volleyball teams and wanted me to play. He patiently taught me all the rules, and, aside from the minor adjustments he came up with to protect my knees, treated me like everyone else. My sixth grade season was ok, but during seventh grade, he bumped me up to varsity, and I thrived. He taught me how to ace a serve. When the other team called a timeout in the middle of an eight-point run, he let me in on a secret– they were trying to break my stride. As soon as I knew this, I was determined to not let it happen. By eighth grade I was serving overhand, digging for balls in the back row, and feeling the rush of adrenaline pulse through my chest when I leapt up to the net to spike the ball to an unprotected patch of floor on the other side. We were not the greatest of teams, and did not win any championships. But he made an athlete out of me.
In seventh grade, when volleyball season was over, my mom signed me up for a competitive swimming team, a brilliant move that likely saved me from becoming wheelchair-bound. The team was coached by Vince, another coach-slash-teacher my mom knew from work. Vince ran his practices like boot camp. There was yelling, and kickboards were often thrown into the pool, dangerously close to young heads. You left everything in the pool during a Vince practice, and somehow he knew whether you were trying as hard as you could. During my first practice, I couldn’t believe how far we were expected to swim. The breaks between sets were short and you just kept on going and going and going. My muscles ached in a very new way. But my joints did not.
Vince coached me for six years. He figured out that long distance swimming, which requires much less lower body strength than sprinting, would be the right fit for me. I swam the 200- and the 500-yard freestyle events every single meet of my high school career. The 500 takes at least six minutes, which is an eternity compared to other races. Spectators stop watching the action in the pool when the 500 is underway because it’s so boring. Even though I was never the fastest person on the team (not even close), I got Vince’s full attention when I swam my 500. He would keep track of my splits and set goals for my personal bests. He taught me how to pace my swimming, and, like Mr. Steele before him, cemented the notion that mental tenacity could help me become a better athlete.
Because Vince knew my mom, he knew the full extent of my disability. He also knew that my physical exertion was accompanied by unavoidable pain that the other girls on the team were not experiencing. During one particularly grueling workout, when some of my teammates were grumbling about the duration of a difficult set, Vince began to yell.
“You think you know pain?”
“You think you know pain?”
“You don’t know pain!”
“That’s the face of pain,” he shouted.
He was pointing at me. My disability, in Vince’s eyes, made me honorable. And if I could make it through the workout, so could everyone else.
My senior year of high school, I was swimming team captain. I had earned four varsity letters, one for each year, and received a special plaque at the end of season sports banquet. I still have the plaque, and realizing what I did to get it makes me smile. Vince signed an inscription on it in black marker, which has since faded. But that doesn’t matter, because I know the words by heart.
“Always remember your ability to persevere, Katherine. I will.”
Thank you Ms. Coss. Thank you Mr. Steele. Thank you Vince. I have persevered.