I was born with a rare medical condition which caused many hospital stays and a need to take an experimental medication during my childhood. Even after I was taken off the medication at eight years old I still had to endure many doctor visits and take other medication to control the Epilepsy I developed as a result of my infancy trauma. I was treated for Epilepsy until I was fifteen years old. Since then, I have been diagnosed with Diabetes, Thyroid disease, Psoriasis, Psoriatic Arthritis, and Fibromyalgia therefore; I have been chronically ill my entire life. I often wonder how much the trauma I went through as a child has affected me now as an adult. It is difficult to discern whether certain aspects of how I respond to life events are just because it is my personality by nature or if it is a direct response to the complications I experienced in my early years.
Let’s review what occurred in my youth. When I was six weeks old the doctors did surgery to remove most of my pancreas due to the fact I had extremely low blood sugars which caused seizures and comas. The surgery did not fix my problem so they gave me an experimental drug. I stayed in the hospital for most of the first year of my life. My mother stayed with me, my father had to work, so my siblings were cared for by our grandmothers. Each summer for the next eight years of my life, my family would travel 2-1/2 hours to a hospital where I was being treated. I would stay for the week with my mother while they tried to take me off the medication. My father would stay with my brother and sister at a nearby hotel. I can’t imagine how my siblings felt being separated from our mother most of the time. I am sure it was difficult for them especially for my brother who was only five years old when I was born. I recall one instance during a hospital stay. There was a little boy in the room next to mine. He started crying hysterically because his mother was going to leave. I asked my mom, “Why is she leaving him”? She said, “She has to go to work, she can’t stay”. I remember feeling so bad for him because he was going to be alone. I was so lucky, my mother was with me all the time! Consequently, I developed an extraordinary attachment to my mother.
The experimental drug I took caused side effects of swollen gums and excessive hair growth. I remember kids teasing me about my gums and asking me why I was so hairy. At first I would tell them I was sick but they didn’t understand so I would just ignore the comments. This led to isolation because I thought no one wanted to play with me. I did have a few friends but I got used to being alone and preferred it that way. I often felt misunderstood. It was too much work to try to fit in so I chose to be by myself. Because of this behavior I was known as the sweet, quiet child.
My youth was filled with blood tests, doctors, hospitals and EEG’s, electroencephalograms. You would think these type of events would scare a child but it was normal to me. I didn’t know what life was like without having these procedures. I guess children are more resilient than adults. I went along with whatever was done to me. It’s not like I had a choice though. In between all of these procedures I still went to school and liked to ride my bike in the backyard. Learning in school was always a challenge for me. Now looking back, I think I struggled with overcoming school issues because I was already dealing with the medical issues. I was tired of fighting so when I was faced with another trial I would shut down saying, “I can’t do it”. My parents would spend a lot of time helping me with schoolwork. I felt guilty because I knew they had to be exhausted from their efforts but I just couldn’t endure more difficulties. It was too stressful.
To be continued…