Turning thirty has been a game changer for me, this is the year that I step up to the plate, and change my life into what I want it to be. No more waiting for things to happen, or worrying about how my actions affect EVERYONE else. My life as a doormat, martyr, schmuck, sucker, and punching bag are over. In twenty five days I am embarking on a journey twenty two years in the making. Some people will take it with me, and some will be left by the side of the road. I am going to be keeping a public journal of my journey, and figured I may as well start at the beginning.
My physical life has been less than easy, as my closest friends and family know. I have struggled with physical disabilities since the age of seven. I’ve been asked about my scars more than once through life and many times I just lied to avoid telling my sob story. I would say I was in an accident and leave it at that. That isn’t true, just easier to brush off. I lied about it so much it became easier and easier to tell the lie. The truth is, I have been fighting a war with my own body for as long as I can remember.
When I was seven, my Grandfather noticed that I began losing balance, falling, and not being able to keep up in my dance classes, seemingly out of nowhere. I was enrolled in four weekly dance classes and a dance camp during the summer, so it was easy to see that I was losing control of my body. He also noticed that this was only happening on my left side, and that my left foot was actually starting to change shape. My toes, had begun to curl, and I lost my ability to stand on my tippy toes. I was taken to the doctor, who suggested an MRI.
I remember that day, as if it is happening now. I remember the smell of the office, and the look on my Grandfather’s face as the neurologist explained to him what was going on inside my body. At seven, I had no idea what he was saying I just knew it wasn’t good. It turns out there was a tumor, the size of a golf ball inside of my spinal column attached to my spinal cord. This tumor was killing the nerves leading to my left side, and my bladder. It was determined that, at the speed it was growing I would be paralyzed within a year. The only option was to try to remove it. I guess you can compare it to trying to remove a wad of gum from your hair without damaging one single strand, next to impossible.
The day of my surgery, we all woke up before the sun had even come out. I was grumpy and tired, I wasn’t allowed to eat or drink anything and my Mom had to rub iodine all over my lower back before we left the house. Once we got to the hospital I was put in a gown and set up on a gurney. Both of my parents were there, my Grandmother and Grandfather as well. I was scared, but not for the reasons that all of the grown ups were scared. I knew I was going to get a shot, and was preoccupied with finding some way out of it. I tried reasoning, asking politely and I even shed a tear, just one. I was given an injection as I clenched my teddy bear, to calm me down so that I could be prepped for surgery. I said goodbye to my family with heavy eyelids and watched as my Father began to cry (he didn’t realize I saw him). Once wheeled into the operating room, the anesthesiologist inserted the IV and began sedation. One of the nurses, held my hand and began counting backwards from one hundred with me.
The next thing I remember I was beginning to wake up, my Dad was sitting next to my bed. The moment I became coherent I needed to vomit. I remember staring into the yellow, plastic, kidney shaped bowl as I got sick and wondering what the hell was stuck all over my chest. Once in my own room at the hospital I realized that there were several tubes and sticky suction cups attached to me, and then attached to machines that would not stop beeping. I let the nurse know exactly what I thought about all of this with a few choice words that a third grader should not have in their vocabulary (I blame the morphine). The next few weeks were rough, I was in a tremendous amount of pain and was constantly being checked, having my dressings changed, and eating pretty awful food by my standards. I just wanted to go home and sleep in my own bed, and eat food that my Grandma cooked for just me. I had to be taught how to walk again (it was as if my body had forgotten). A physical therapist came in everyday and rubbed my limbs and had me do a few exercises. Pretty soon, I was walking from room to room on the children’s ward visiting other sick kids, reading the little ones stories and having a few wheelchair races.
When I finally got to go home, I was taken to my Grandparents house where I could recover with the aid of my Grandma full time. She lovingly changed my dressings twice a day, gave me sponge baths, and pushed me to get out of bed and do my physical therapy each day. All I wanted was to go back to school and play with my friends. I started to suffer from some depression at this time, I had never felt so sad. After many months I was allowed to go back to school and try to have a normal life. Unfortunately I was not like every other kid, the nerve damage I sustained caused me to be unable to determine when I needed to use the bathroom, I had to self-catheterize while at school twice a day. Having to do this, made me prone to bladder infections, which I had on a regular basis. Sometimes they were so bad that I would vomit and have very intense fevers. Being sick like that all of the time, made it difficult to keep my attendance. I also could not participate in PE or any other physical activity. Despite the removal of most of the tumor, I was still partially paralyzed and mostly numb on my left side from the waist down.
Flash forward six years, I am thirteen and in Jr. High (as it was called way back when). I had spent the last six years trying to regain some of my abilities and have been mostly unsuccessful. I meet with an orthopedic surgeon who thinks he may be able to help with some of the pain associated with the deformation caused by the tumor. After a few xrays and lengthy talks with the doctor, we go forward with another surgery. This time there is hope for regained mobility after recovery. I had a complete foot reconstruction. I don’t recall as many of the details going in for this procedure. I remember waking up again, vomiting and falling back to sleep only to wake up in the most agonizing pain I have ever experienced to this day. I was in the hospital for about four days. I was sent home in a below the knee cast and a set of crutches. I remained in that cast for three months. After the initial three months I was put in a walking cast, which was incredibly painful. Walking again felt foreign and was very uncomfortable for the first few days. Three months later I was out of that cast and put into intense physical therapy. I remember being in tears at every session, the combination of pain and frustration proved to be too much at times.
The following year, I was pretty mobile, dancing, walking all over the valley with my friends and so on. Freshman year, I tried out for the drill team, and got in! I was so elated to be back to doing something I loved! Practices were everyday, sometimes before and after school. A few weeks in I realized that I may have bitten off more than I could chew but I wasn’t going to stop, it felt too good. I got really crafty at hiding my foot, and my pain. Sometimes I would get home from practice, and wouldn’t be able to get my sneaker off due to all of the swelling in my ankle. I remember coming home and sitting on the bathroom floor crying, and hitting my foot in frustration and agony. I hated it, my foot that is. I remember contemplating chopping it off and being done with it. About halfway through the school year I stopped showing up to practice because of the pain and slipped into a pretty serious depression. I just couldn’t do it anymore and It made me shutdown.
I found a new group of friends and something I loved just as much as dancing, alcohol and drugs. When I was drinking and using, it was so much easier for me to forget about all of the things I was missing out on. It also helped ease the physical pain. Not having the support system I needed at home, left me searching for something else. After my Grandfather passed away, I really felt like I had no one. He was my best friend and the man who saved my life in so many ways. Eventually my behavior got me thrown out of my Mother’s house at sixteen. I lived at a friend’s place for a few months before my Dad finally found me and begged me to come home. I went to stay with my Grandmother, which is the best thing that ever happened to me. I was safe there, I was loved. A few months after living with her, I cleaned up my act and began caring about my life again. I spent the next thirteen years, living with pain and depression associated with the partial paralysis in my leg and foot. I’ve become a master at hiding my foot due to shame. Who wants to see a scarred up, and malformed foot? Not me. Hiding pain is pretty much second nature to me at this point. I’ve been married, divorced, depressed, elated, in love, the only constant has been physical pain and physical limitations. The most difficult aspect of all of this, is having the energy and motivation to do all of these physical things, and not having the ability or cooperation from your body. I have tried to will myself into strength and ability, only to be disappointed.
I decided that this year, it all ends. No more shame, no more suffering in silence, no more hiding. In 25 days I am going to have two procedures that will improve my mobility greatly and improve the esthetics of my foot. I am equally terrified and excited.
