Jamilas Story

In Chicago, Ill. I was born Beautiful. That’s what my father named me. At least, that’s how I was brought up to see myself. It didn’t turn out that way, though. January 15th, 1982 was the date of my birth. I was told I was born prematurely, but hey, I’m here. The youngest of 3 girls. My mother had a son, but he was also born prematurely. At the time, resources to save him didn’t exist. His name was Nathan. I don’t know him, but I love him.

Instant issues arose with my entrance into the world. My spinal cord protruded through my back and one of my eyes was crossed. I had a lot of fluid build-up in my brain. Turns out the spinal cord issue was Spina Bifida and the fluid build-up was hydrocephalus. Surgeries to correct my spine, my head, and my eyes immediately followed. My eyesight was fine after that, I wore glasses for a few years once I was old enough to until I was about 6. I never wore them again until my late 20’s.

Learning to walk was a challenge. My right foot twisted inward . I had to have surgery to correct it. During the surgery, a pin was placed in my big toe to flatten it. I had to go to kindergarten in a wheelchair for the first half of the year, and walker for the second half. I had to ride the special bus and everything. But I did have one great friend. That was all I cared about. So, I wasn’t really walking without aid until I was about 6 years old. But that’s when the real problems began for me. 

Being picked on was something my sisters and I were raised not to do. So we never did. But, oh, was it done to me! All people saw was this girl who walked with a serious limp who had problems controlling certain things that normal people usually could. I won’t go into detail, but I will say that the muscles below the waist were not strong at all. I dealt with laughs and jokes about that until high school. But I was always the nice one. Some people did like me. I had my close friends, some of whom I’m still friends with to this day. But I could sit here and name each and every person who made me cry. 

Remember I told you about the fluid build-up in my brain? To keep that fluid flowing, doctors placed what’s called a shunt in my head. In the 4th grade, my shunt malfunctioned. I will never forget this as long as I live. My father was out of town, so it was just my mom, sisters, and me. I had the most painful headache a person could ever have…migraine-like. I woke my mother up in the middle of the night, crying. She gave me something for it and let me lie in bed with her, but the pain didn’t go away. It got worse, and so did my crying. So she decided to take me to the doctor. They did X-rays and found that my shunt was blocked. So I had emergency surgery to remove the part that was blocked and have it replaced with another part. They said had I not gotten there when I did, the shunt could have burst and I wouldn’t be here to talk about it. Thank you, Lord. 

I didn’t have another surgery until 6th grade. My right foot was beginning to act up again. Instead of it twisting inward, it twisted outward. So I had surgery to correct that. A couple of years after that, the pin that was placed in my toe during the first surgery broke in half, and one half came out of my toe by itself, leaving a hole in my toe that got infected. So I had to have a 3rd right foot surgery to get the other half of the pin out and clean the infection. 

All in all, with a few more surgeries to correct my back, among other things, I’ve had a total of 10 surgeries. A blood transfusion as well. You’d think being able to go through all of that would make a person stronger. I thank God every day for life, but to be honest, my spirit was completely broken. I’ve never really been able to live the life I’ve wanted to live. Not to say that I can’t, but fear has always been in my way. I may not be able to walk or run as fast as others, but I should be thankful that I can walk and run at all. So, why aren’t I? I have to watch what I eat so certain issues don’t flare up. You have no idea how abnormal that makes me feel. It breaks my heart to watch other people enjoying things that I cannot. I try to get out of this whole ‘feeling sorry for myself’ thing, and at times, it works. But for the most part, I’ve become comfortable in the box I’ve chosen to live in my entire life. I don’t know exactly how to change that. I’m not even sure if I’m ready to try to change it. I’m afraid of change. But I need to change. 

In order to help me cope with what I’ve been through, I turned to writing. I write poetry and journal-style blogs. Everything I write has a personal touch to it and is about personal experiences. I do this to heal myself and bring a sense of comfort to others who may be going through something similar.