One thing I have learned as I age is that a story can be told many different ways.
I always wanted to be a storyteller. However, I just thought I could only do it by acting and singing. Now I know it can be done in multiple ways. This story was not in my book…fully.
Once upon a time, there was a girl who looked her age on the outside but on the inside she was more advanced than her peers. When she was two she looked like she was four. When she was five she was playing with Barbie Dolls, but every time she heard Five for Fighting’s song 100 Years she would keep asking herself and God “Am I really going to be like this for 100 years?” That thought went through my head when I was five years old but it got better when I met Amanda and the other members of Bergen County Special Services Computer Camp.
The campers had different disabilities but when I meet people on vents (which have only been a small number of people) it sticks with me. There are so many different reasons to be on a vent, but at the time I didn’t understand it. I thought that we were all the same. At the time we didn’t understand each other’s health. After all, we cared more about Hannah Montana and High School Musical. When I was in the mood I paid attention to more details than others, even if I didn’t understand all of them. But now, upon reflection, it makes sense.
When you’re paralyzed as a child one has a greater possibility to have scoliosis than a child that is able-bodied. Depending on the child’s condition scoliosis can develop for several reasons but the biggest reason is the paralysis and not walking. The muscles that hold the spine up are called paraspinal and they get weak and reshape the spine. The bones of the spinal cord also get weak and will reshape. Although I am not a doctor, I am a disability activist with a unique point of view so I try to study as much as I can to help as many as possible.
As I grew up, I didn’t have a role model that looked like me so I have decided to make it my duty to help kids on vents. In my case, I am paralyzed from the neck down. I do have neck movement since my accident but not full neck movement. I have had finger movement on each hand but that comes and goes. The reason I am going down memory lane is because history repeats itself.
I developed scoliosis, a condition in which the spine bends to the side, when I was under 10 years old. The difference between myself and most with pediatric disabilities is my spine was already injured. The posture my body was forming was a “C.” When it was curving badly it caused so much spasticity. It wasn’t until recently that I fully understood this.
My accident occurred at the age of two so my spine was constantly under pressure as I grew throughout my life. But it helps me sometimes when I remember my campmates because two of them (I was the third) received their spinal fusion around the same time period at the same hospital. The main difference is, first, my disability makes me spasm so bad that it restricts my breathing, and second, I have multiple levels injured from the car accident I was in.
Another thing that helps me get through it is the fact that my mother stayed by my side and instilled religion in me. I am extremely blessed because it gives me patience and hope, but at the time my face wasn’t as strong as it is now. My neurosurgeon is another bright light for me. He was and still is kind and patient with me. I know that doctors are not supposed to get too emotionally close to a patient but he is like a father to me. Another medical professional who helped me get through my medical madness while growing up worked in radiology. I met him many years ago at a time I needed a variety of X-rays, CAT-scans, and MRIs. At the time I was in so much pain that any form of imaging seemed frightening, but he calmed me down. Today, he is still so warm and a calming influence.
While I have grown physically, mentally, and intellectually, I feel as if I’m a co-worker or an ally when I see them. That is where the disability activist /advocate in me comes out. If those two were not in my life everything would be a whole lot worse. We need more medical professionals to care about what they do. It is important for them to actually know their job and not just be a pretty face. Having dealt with so many healthcare providers in my life, I am uniquely qualified to recognize those who know their stuff and those who happened to pass and get a degree, but don’t know anything at all.
My spinal cord has way more issues now than at ten years old. It is soon to be 21 years. I have learned so much and I continue to learn more. I compare notes with people I have met and know. My friend Amanda and I are like sisters, but I learn so much from her just like she learns from me. For example, I now know much about the differences and similarities of the many versions of paralysis and other diseases that affect the neurological system. That’s the reason why this is titled Circle of My Life. Now I understand it. Now I want to fight as much as possible to fix pediatric paralysis and ventilator usage. Parents and children are frustrated. They need someone they can relate to, look up to, and advocate for them. I hope I can help them in some way. Every kid needs someone to look up to, especially those that are paralyzed and even more so those that are on a vent… I will be that voice.