Norberto's Cerebral Palsy Journey

Because I was born with cerebral palsy, I have never thought about it much – it has always been my normal. Cerebral palsy is the most common childhood physical disability and affects 2 to 2.5 children per 1,000 US-born children (Krigger, 2016). Cerebral palsy comes in many shapes and forms; mine, in particular, is known as right spastic hemiplegia. Essentially, that means I have movement issues with the right side of my body. Cerebral palsy is a permanent disorder in the developing fetal or infant brain (Sadowska et al., 2022). Many people have preconceptions about cerebral palsy, how it presents, and the outlook for those with it. Today, my cerebral palsy is not easily noticed, and people are often surprised when I share that I have it.

I remember being told while growing up that I wouldn't be able to run like other children and that my chances of playing musical instruments were slim due to a lack of strength and dexterity on the right side of my body. Between 9 months old and right before I turned 18, I would have five different surgeries to correct muscular and skeletal leg issues connected to my cerebral palsy. Throughout those years, I was also constantly in physical therapy to gain strength and train myself to utilize the right side of my body more. To this day, I still favor my left leg, and when I'm feeling sore, my cerebral palsy becomes more evident as I walk with a limp.

Despite all that I've been through, I can run, play saxophone and guitar, and most wouldn't realize I have cerebral palsy. Gaining the ability to do these things has taken tremendous and continuous effort. Today it's no big deal to me, but I remember my struggles and the effort it took. Throughout all the surgeries, the physical therapy, and the years spent using a walker or a cane, I never thought much of what I went through. I was born with it, and so it was my normal. It is only now, in retrospect, that I realize that my normal was not everyone else's normal.

I’ve always been the kind of person to try and push myself to the limit and test the boundaries of what I’m capable of. That mentality drove me to focus on physical therapy and also on mastering skills that I knew would be difficult such as learning to play instruments. The most challenging part of overcoming my limitations was the waiting. When it comes to accomplishing things, I’ve always been and continue to be very impatient with myself. Incremental steps may be barely noticeable but are steps nonetheless on the journey. It’s very easy to forget how long the journey was and all the effort that went into it after you’ve arrived at where you wanted to be.

The most rewarding moment in all of this was when I started college. At the end of high school, a lot was going on – I was homeless, and I had just had a major surgery. Stepping foot on to the college campus in essence closed a chapter of my life, a rough chapter that I managed to survive. To me it was the culmination of my efforts and a testament to what I am capable of. It was the end of one journey and the beginning of the one I’m on now where my drive is to continue defying my own and others’ expectations, knowing how far I’ve come from where I started.

I love sharing this aspect of my life's story, among other elements, to shed light on cerebral palsy and encourage others to strive to defy expectations and strive to thrive. My cerebral palsy is undoubtedly on the mild end, but had I believed that I wouldn't be able to run, had I thought I wouldn't be able to do other things, I would never have tried, and I wouldn't be where I am today.

Sources:

Krigger KW. Cerebral palsy: an overview. Am Fam Physician. 2006 Jan 1;73(1):91-100. PMID: 16417071.

Małgorzata Sadowska, Beata Sarecka-Hujar & Ilona Kopyta (2020) Cerebral Palsy: Current Opinions on Definition, Epidemiology, Risk Factors, Classification and Treatment Options, Neuropsychiatric Disease and Treatment, 16:, 1505-1518, DOI: 10.2147/NDT.S235165