By Maximillian Wollner, Special to Everyday Health
As a kid, not knowing the full spectrum of my disability, I would often ask my mom, “Am I always going to have cerebral palsy?” Her response: “Yes, but it can’t get any worse.”
Those words have played a prominent role in my life, reminding me that I am in control of cerebral palsy (CP) and not the other way around. Knowing that CP was a non-degenerative disability filled me with optimism that I could be like all the other “normal” kids in my neighborhood. Even though that would never be the case, I never wanted to be labeled “the kid with the limp.”
I usually don’t discuss CP with others unless they ask, but now (March is National Cerebral Palsy Awareness Month) seems like the right time to shed some light on what it is like to grow up with CP.
I was born almost 11 weeks prematurely in Alexandria, Virginia. I couldn’t breathe on my own and was put on a respirator in the intensive care unit, where I remained for the next two months. I came home from the hospital on my sister’s first birthday – she says I was the best birthday present she has ever received. However, the gift of my presence was short-lived as I was back in the hospital weeks later with respiratory syncytial virus, which eventually ended in laryngeal reconstruction surgery.
I was finally diagnosed with cerebral palsy at 14 months. According to my parents, the doctors thought my developmental delays were because of my premature birth and that I would eventually “catch up.” When I learned to sit up without assistance, my mom noticed that I wasn’t sitting up straight and that my legs were rigid. My pediatrician still thought nothing was wrong, but after some coaxing I was taken for a CT scan, and I was formally diagnosed with spastic diplegia.
Spastic diplegia, caused by damage to the motor cortex, is a form of CP characterized by stiffness or tightness primarily in the legs and hips. About 70 to 80 percent of people with CP have the spastic form of the disability, although there are other more severe forms of CP. The exact cause of CP is unknown, but premature birth and any associated brain damage are major factors for the disability.
My experience with CP is similar to walking with two pulled hamstrings, but without most of the pain associated with such an injury. All of my leg muscles are overly tight, so I walk with an exaggerated limp. I am very fortunate to have a mild case, but still felt the stigma that shadows someone with a physical disability.
Show and Tell
From the moment I entered public school at age 5, I became the object of weird looks, pointed stares, and other humiliations. Many times, the neighborhood troublemaker, Court, would assemble his henchmen to make fun of my walk by imitating it, while calling me names like “Wonky Wollner” or simply calling me “cripple.” Most of the time I didn’t care what people said or did to tease me. I had a different approach to fighting bullying – honesty. Instead of leaving my disability up to the imaginations of others, I was very upfront about it and answered any question.
I spent my early school years wearing visible plastic braces, which kept my feet from becoming deformed from spasticity. When I was 7 years old, during show and tell, I decided to shock my class by taking off my braces and explaining their exact function. After that, most of the stigma of being disabled was gone (well, at least until high school gym class – but that’s everyone’s nightmare).
Run, Forrest, Run!
Usually I don’t let my disability get to me, but sometimes odd triggers would strike a blow to my self-esteem. Seeing the movie Forrest Gump, for example. In the film, Forrest is born with CP and has to wear braces similar to mine. In the iconic “Run, Forrest, Run” scene, he breaks out of his braces and is subsequently cured!
To any moviegoer, this is just another chapter in a heartwarming story, but it is simply Hollywood magic. No one can be cured of their CP, a concept that was devastating to my six-year-old self. I cried for hours afterward.
The good news is, like most issues I have with my CP, Forrest’s story didn’t bother me for too long. Instead, I resumed my quest for normalcy. I strived to be active like everyone else was. I spent countless hours in physical therapy doing stretches, joined my neighborhood swim team and the Boy Scouts; I even developed a fondness for playing baseball, which is still a great competitive outlet for me.
How It Is Now With My Cerebral Palsy
Growing up with CP has been challenging, but as I get older (I’m almost 23) I find myself thankful for the physical and emotional struggles I’ve had to endure. Living with CP has taught me to be a problem solver: “I can’t do this” became “I will do this” and then “What’s next?”
My advice to anyone struggling with self-esteem issues, related to CP or not, is to find an outlet or a hobby that makes you feel awesome and stick with it (mine’s singing). It sounds like a cliche, but it couldn’t be more true.
Still to this day, I try to distance myself from my disability, especially considering my cerebral palsy is minor in comparison to most cases, but there are about 500,000 people in the United States who have this incurable condition. My hope is that my story can raise awareness about cerebral palsy so that we may eventually find a cure. Until then, I will continue to walk through life spreading joy and awareness to others. I’m proud of not only how I grew up, but how I grew up with cerebral palsy.
Maximillian Wollner was born in Northern Virginia and currently lives in New York City. He received a degree in communications from Fordham University in 2013 and has since been working as a Production Editor at Everyday Health. Diagnosed with cerebral palsy at 14 months, he has been a vocal advocate for cerebral palsy awareness. You can follow him on Facebook and Twitter. To help those in need with cerebral palsy.