KEEPING IT REAL: Jonathan’s Story

KEEPING IT REAL: Jonathan's Story
Posted on Thu 18 Jun 2020

We're continuing to amplify the voices of the cerebral palsy community. Check out Jonathan's story.

KEEPING IT REAL: Jonathan's Story*
By Jonathan Sanders

Everyone’s story is different and I want to share mine with you. I’ve been through a lot, and I’m still going through a lot, but I persevere.

I was born almost two months premature in 1978, just one year after my parents lost a baby boy, my older brother, Matthew, due to a premature birth that most likely would've resulted in severe mental and physical disabilities. He lived for one day.

Because of my parents’ experience with my brother, my father demanded that I be born in a different, nearby hospital. And so I was.

I was a bowling ball of a happy baby. But when I was around five or six months old, my parents noticed that I wasn't developing physically in the ways they expected — primarily related to not walking and a lack of balance.

Not long after that, I was diagnosed with cerebral palsy — specifically, spastic diplegia. Luckily for me, it was quite minor — and by all accounts, I grew up happy and healthy, but I obviously had trouble walking with the familiar gait that is CP.

School came easily to me and I excelled academically. Socially, however, like all of us growing up, I endured days, weeks, and months of basic teasing, name calling, pointing, laughing at how I walked or seemed to limp, and the typical isolation from cliques, cool kids, and the popular girls.

I wasn’t seen as someone to date, or to invite to parties, so I began to surround myself with the other outcasts and tough guys for protection and I tried to develop the confidence that I would need later in life.

In 1995, I had a surgery to lengthen my hamstrings and hip flexors, I was left with two full-length leg casts for nine weeks in the summer. That was far from awesome and definitely not the way I wanted to spend more than two months of my life, but it made my legs straighter and more flexible, as long as I gained strength and taught myself to walk.

I was accepted into the University of Notre Dame in 1999 after a short stint at Holy Cross College across campus in South Bend, IN. Friends came and went but socially, dating was very hit and miss. I stuck out mostly because of how I walked and as a young adult, was the target of the same name-calling, jokes, and being stood up on dates, as few as they were.

Six months after graduation, I moved to Detroit to work for Chrysler in 2002, and I’ve worked for them ever since.

In 2004, I had knee and patella surgery to remove a "second knee cap" as doctors called it, but I think it was a big piece of calcium that grew below in between my patella tendon, tearing it to pieces as I walked. I traveled to New England with my father and walked all day, pain free, with no medication. It was the first time in a long time that I felt that good.

The pain went away for three months, and then unfortunately came back tenfold. When doctors looked at x-rays later on, they couldn't even believe I was walking, let alone going to work and doing what needed to be done. After all, I was alone and stubborn, true to my Scorpio sign.

I loved to mountain bike and slowly this became the only activity that didn't cause pain in my knees, feet, ankles, toes, and elsewhere. As for my life with CP in Michigan, I lived by myself and was prescribed some form of narcotic pain meds, creams, wraps, balms, IB shots, white blood cell transfusions, rooster combs shots, cortisone, and braces, while spending untold amounts on "snake oil" online products, doctor appointments, and countless co-pays since 2006.

The doctors could only give me narcotics as a proposed solution, but my mobility slowly became the issue. I had quit my bowling league and quit dating, and I found that the energy I once had to do most things was replaced with stress, anxiety, depression, isolation, fear, anger, and even worse.

I didn't feel like I "fit" anywhere or with anyone. I had to start walking with a cane and/or a walker in 2018. At work, I’ve filed for Family Medical Leave Act since 2010 to protect me because of how my physical pain was keeping me from work. CP felt like a weight on my body and soul, even at work.

I’d fought my entire life to not be defined by CP and now as I got older and slower, it seemed that I couldn't escape. On top of all of this, I also wanted to find someone to spend my life with. I wanted a woman who would see me, to look in my eyes before seeing how I walked, to love me for me, and not be concerned instead about perceptions from other people.

Last year, after years of pain, I finally found an orthopedic surgeon who provided some pain relief by performing a half knee replacement.  I’ve traded severe pain for no strength and no balance, but I'm continuing to improve. I'm still not sure how much I'll be able to get back. My insurance barely covered physical therapy because they refused to see the CP as the underlying condition and I was left doing therapy on my own after just 24 hour-long visits. Because of this, and because I used the walker to carry myself, I ended up tearing my bicep and rotator cuff as well. So I had surgery for that a few months later while not being able to walk.

Now more than a year later, I still can’t walk without the help of a walker or cane. (Most healthy people can walk on a knee replacement weeks after surgery.) I still have multiple tears in my other knee, as well as painful Osgood-Schlatter disease, Patella Alta, and now, severe acquired scoliosis from CP.

But I‘m still a stubborn Scorpio and I refuse to believe that I am the only one going through this. I know there must be other options out there somewhere, even though it feels like I’ve tried absolutely everything.

I’d be lying if I told you that I'm not fearing 51, 61, 71 years old. Only people like me would understand the struggles and challenges that we face. I’m just happy that the Cerebral Palsy Alliance Research Foundation is out there for people like us, and even young mothers and fathers who wonder about the future for their children with CP.

 

*Jonathan's story is part of KEEPING IT REAL — a series of personal stories that will take you deeper into the lives of people with CP. Each person makes different choices based on what works for them, and we’ll showcase that — highlighting what life is like for them on a daily basis, what they care about, and the ways CP impacts them. 

The KEEPING IT REAL blog is intended solely to raise awareness about the varied human experience with cerebral palsy and shouldn't be read or construed to contain any medical advice or medical endorsement by Cerebral Palsy Alliance Research Foundation. Only you and your doctor know what's best for you. Please consult your doctor for medical advice.

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