Why Saying Cerebral Palsy Isn’t Degenerative Does Not Tell The Entire Story

Like many who are born prematurely, my entrance into the world wasn’t exactly a smooth one. Born ten weeks too early, I suppose you can say a fixture of my personality has remained set in stone: impatience. What can I say? I knew I had a wonderful family and a beautiful mother, I had to meet them. Getting back to the point though, at some point during the birthing process I sustained an intracranial hemorrhage- bleeding inside of the brain. I also wasn’t getting adequate amounts of oxygen. After a difficult recovery for my mother, everything otherwise seemed well, so we thought. Fast forward three or so months my family discovered that I had Water on the Brain or Hydrocephalus. After corrective surgeries, I was on the mend and doing as well as could be expected. Smooth sailing from here on out, right? Well, not quite.
Around the age of three when I wasn’t meeting developmental milestones, physically, doctors discovered that while my primary medical condition is Hydrocephalus, my secondary physical disability is Cerebral Palsy. I have talked at length about Hydrocephalus and the impacts that it has had on my life, especially in the last eight years or so. The condition that I speak a little less publicly about, ironically, is the condition that you can almost immediately see that I have when you’re looking at me (more so when I’m moving). Throughout the course of my life, my family has been told that Cerebral Palsy isn’t Degenerative- meaning that the damaged that my brain sustained during birth will never worsen. It is the same now as it was twenty-five years ago. I will be the first to acknowledge how much of a blessing that is! However, I also acknowledge how misleading that statement is. The form of Cerebral Palsy that I have is called Spastic Diplegia which manifests as a constant stiffness or tightness in the muscles relating to the lower extremities, my legs, hips, back and pelvis in particular.

While it is true, the brain damage will not worsen, it is clear now as I’ve grown, that my physical condition is deteriorating as a result of the unnatural movements of my body.

Thanks to the family who has fought for me to lead a normal life, I was a child who grew up pretty similarly to my peers. I loved physical activity. Each recess and lunch break I was outside playing with my friends- whether it was four-square, basketball or tag, I was always on the move. Without fail, I was also in my school’s nurses’ office receiving medical care for bumps and scrapes because I refused to by limited by my body’s abilities. Have I mentioned I’m also incredibly stubborn? I began horseback riding at around six years old. What first started off as a more amusing form of physical therapy, slowly grew into a passion that allowed me the privilege of competing internationally for my country of Bermuda and eventually, the training which led the way for the possibility of the 2012 London Paralympic Games. At that time, except for flying, there wasn’t anything I believed I was incapable of doing.

That was then and this is now. Seven years further into a new chapter in the story of my life. On May 11, 2015 I underwent extensive surgery to “correct” the misalignment of my Tibia and Fibula. Though correct is a term that I have to use very loosely. I consented to undergo the surgeries knowing that it would not correct my secondary physical disability– it would however, correct the bones placements and hopefully relieve the stress and damage that it was creating for my body. I think back to myself and my body, what it was like seven or so years ago and the tasks that I very foolishly took for granted. Those very tasks are still, mostly, the ones I am still able to do, though it may take more time for me to do them. Thankfully, my knees are not dislocating as often, (the month or so before the surgery, one was dislocating almost daily!). My lower back, S.I. joints and my heel chord remind me thought that while my physical disability isn’t getting worse, my body isn’t as strong as my will. Walking unaided by a cane for extended periods of time is not longer a choice. Truthfully, some part of my lower body hurts most of the time now and that is frustrating and draining, sure and it is frustrating to admit that I no longer move with the ease that I once did.

But in writing this post I understand that while my CP has taken much from me, it has also gifted me some pretty amazing opportunities.

I have a different perspective of the world.

I try to be kinder to others, because those very same ones haven’t always been the kindest to me.

I have had the opportunity to see different parts of the world, an opportunity I was given because of the limitations this condition placed upon me. And now, years later, I know that I mustn’t take anything for granted. Can I take back those earlier years where I so carelessly did? No. I can however make sure that I do not continue making that mistake. A few years ago I realized that while I like control, I cannot control my body and how it will progress… or decline. What I can do though is make sure that I make every day count.

That everyday I choose to do something that scares me.

To give all that I have until the end of each day because I know the ability to do so isn’t promised and I encourage you to do the same. These lessons are universal, regardless of physical ability and, unfortunately, grossly underappreciated.

So tonight, I hope you rest well, because tomorrow is a new day. Make it count!