Wednesday, May 13, 2020

A Life without Neurofibromatosis

Have you ever thought of the person you would be if you did not have NF? Well, today, I thought of just this as I walked Ki-Bo, my 13-year-old boxer.  I know I, for one, have wished many times not to have Neurofibromatosis. I pray and hope for a cure in my lifetime, but wonder what that would look like for me and everyone living with NF.  I am optimistic that this will happen, but I do not know how it will affect me. Will I be able to take a pill that will prevent fibromas from developing, or will I take a pill that will dissolve the fibromas that I already have?  These are questions I hope to have answers to soon. Unfortunately, I do not think I will ever have sight in both eyes, nor will I not have a bone deformity.  So, even with a cure, I will always have a trace of NF; regardless, I will be content, knowing that my body will be free of tumors. 

Even though I genuinely would relish an NF-free life, I would honestly not know who I would be. Let's face it, the person I am today has a lot to do with Neurofibromatosis; despite not letting this relentless condition control and dictate my life, it has played a role in shaping the person I am today.  What I am more curious to know is if I would have had the same or similar life experiences if NF had not had the significance it has had or even better, had not been. Would I have been bullied in school? What would I have been made fun of if not NF? Truth be told, my tormentors never even knew I had NF, all they knew was that I looked different, and that gave them the right to be cruel. Their jokes and gawks were uncalled for and left emotional scars more profound than the ones caused by surgeries. Maybe I would have swum in my high school's swim team for all four years instead of just my freshman year. Or actually been an active member in the Thespians club instead of being in the background. 

Furthermore, would I be at the same point in life I am today if NF had not played a role?  Maybe I would have another career or altogether would have studied something other than psychology and sociology.  I could very well be married with children. So many more questions are left unanswered when attempting to imagine a life without Neurofibromatosis.  I may not be able to answer any questions above; however, something I know for sure is that I would not be writing this if I did not have NF. Moreover, my blog would not exist, and therefore, I would not be able to make an impact on those that are needing support. 

I cannot choose what personality traits I would have if I was not born with NF, just like I cannot decide how this condition will continue to affect me.  I do not know the person I would be or the life I would live without NF. What I do know, whole-heartedly, is that the life I have is one I treasure.