Over the years, I’ve had many people tell me how “blessed” I am. I used to have conflicting feelings about this word in particular, and admittedly wasn’t one I would use during the times I felt particularly sad or upset about having CP (I’m only human, after all). That phrase, which sounds kind of like a compliment, still fills me with pressing, big questions.
Is the phrase, “You know, you’re truly blessed,” a line I’ve heard time and time again, one of those empty things that a person says and thus carries a negative connotation? Like when somebody says, “everything happens for a reason.”
Why use the word, “blessed?” Is there a word out there that means more?
Who was blessing me? Was it my family? Friends? The doctors who treated me since infancy, or the ones treating me today?
Another problematic aspect of the word, “blessed,” is that it’s almost more about the person using it to describe me. If they get me to agree that I am in fact “blessed,” it absolves them of having to acknowledge or deal with the aspects of living with cerebral palsy that I do struggle with.
If I sound bitter, it’s probably because at certain points in time, I was. I would get incredibly frustrated that a reality many people take for granted–the ability to walk without aid–wasn’t quite a possibility for me in the way it was for them. I could not walk somewhere without having to think about it, or without having some kind of struggle, even without falling over. I couldn’t walk long distances without crutches. Period.
It wasn’t until I was 17 years old and I began to work with one of my mentors, a nurse practitioner who specializes in treating cerebral palsy in children, that I began to realize what others really meant when they would call me “blessed.” CP itself is on such a wide spectrum that each case is as unique as the person it affects. This means that more often than not, the children my mentor would treat had much more severe cases of CP than I did.
Even though my CP is considered less severe than other cases, my walking wasn’t, and isn’t, perfect. Without crutches, I still have a certain sway in my gait. My balance is poor. My upper body contorts to overcompensate when I move around, as it tries to locate a proper center of balance that had since been altered after my last surgery. I may be more reliant on crutches since that whole ordeal, but I can walk.
Though this point in my life is not perfect physically, getting here has been quite the adventure. I went from using AFOs (leg brace, pictured above) and a special stroller, to using a posterior walker, to finally using crutches. I still need extra help with some things, and I had a few major orthopedic surgeries over the years to achieve optimal mobility and quality of life.
I accept this reality. Every day I must acknowledge how much I’ve achieved even while meeting certain challenges of living with cerebral palsy, how hard I’ve worked, how far I’ve come since childhood to get to this point. In that case, yes, I will say that I am blessed, because despite these challenges, I still have so much to be thankful for.
The Spastic Diplege 