Cheating My Body
When I was 13 years old, I was a very active young girl. I was highly competitive in swimming, I cross trained in track, and I was a straight “A” student. In the time frame of a few months, my entire life as I knew it changed. What should’ve been a normal life, was instantly turned upside down and inside out. Although I was not diagnosed with cancer per say, I was diagnosed with an incredibly rare disease that affects very few children and adolescents around the world. So few in fact that there are only two hospitals in the entire United States that treat it.
It began so quickly that I can hardly remember when exactly I started experiencing the pain. I would be doing a normal, everyday task and suddenly I was in such excruciating pain that I would fall to the ground grabbing my torso. At first my family thought I was attention starved or that I was throwing a temper tantrum, but after a few weeks of this going on and getting increasingly worse, they decided to take me to the doctor. When I went to the doctor, they did an exam, and found that there was nothing wrong with me. We went on with our lives as usual, and again I got the same kind of pain. Eventually, when the pain had increased so much that it was unbearable for my mother to see me in that state, they took me to the hospital. While at the hospital, they poked, prodded, and did tests; they never found anything wrong with me. The hospital pumped me full of pain meds and sedatives until I was nearly unconscious and they sent me home with my family again. This continued over and over again until I was going into the emergency room at the hospital almost every other day to get some relief from the stabbing pain.
I was still able to somehow live my life and get my schoolwork done when I felt “ok”. In my spare time I was on the internet constantly, looking up my symptoms and trying to figure out what was wrong with me. The doctors had checked for appendicitis and found nothing, but it seemed that all my symptoms were pointing to it. I began to miss out on a lot of my classes at school and all kinds of fun school functions because I was in too much pain to even speak. The piercing pain in my abdomen was more than a little thirteen year old body could handle and I started to mentally break down because of the constant pain. I was an extremely driven swimmer so every time that I was having a “good day” I would train nearly ten times as hard as the other swimmers. Because of this, I was given the opportunity to go to Australia with a team of swimmers to compete in goodwill type games. On the plane ride there, my pain began to escalade more than it ever had before, by the time I got to Australia, I hadn’t slept in over 24 hours, nor would I for quite some time. We were there for about 3 days before I had to go to be wheeled out of the Olympic park where we were practicing in an ambulance. When I got to the hospital, they checked me out and found that my appendix needed removing. A few days after they removed it, I went back to my hotel and started my recovery. No sooner did I get back then I had to go right back into the hospital with nearly as excruciating pain. The kept me overnight and cast it aside as just post operational pain. Seven days after my surgery, I was still in EXTREME pain, but my mom and I boarded a plane back to the United States. We thought that all the pain that I was experiencing was merely post-operation pain and would pass as soon as my scars healed. Little did we know, we were terribly wrong.
For the next two years I continued to have pain nearly everyday, but now it was worse than ever before. When I rode in the car with my family, every bump in the road, every manhole cover even pained me. It even got to the point to where all I could do was strip down until I had no clothes on and lay in my bed because everything hurt. It got to the point where I couldn’t attend 80% of my classes at school. I am almost scared to know what my high school attendance record was. In the very little spare time I had, I started to talk with my doctor and research more of my symptoms. Somehow, I was lead to “phantom limb syndrome” as a possibility. This is something that is really popular in soldiers and amputee victims, where they still feel pain in an organ or limb that doesn’t exist. We delved into my research with my doctor and she said that it looked like what I had was very similar but not quite there. After much further research, we found out that I have Reflex Neurovascular Dystrophy. As I researched into my disease further, I found out that there were only two hospitals in the entire country that treat it. By now I was nearly sixteen years old so I was more capable of making my own decisions medically with the help of my mother and my doctor. My mom and I and my doctor sat down and discussed the two hospitals that could treat me and made the decision to go to the Seattle Children’s Hospital rather than fly all the way to Philadelphia who’s children’s hospital had piloted the treatment program.
When we got to the Seattle children’s hospital, I met with an occupational therapist, a physical therapist, and a neurologist and set up a treatment plan that I could do from my home and be comfortable rather than staying at the Ronald McDonald house and being in the hospital every day for treatments. We got a plan together and made our way back to Dallas, Oregon, nearly a 6 hour drive each way. My mom was an INCREDIBLE support for me during this time, I have no idea how I would’ve made it through the intense therapy without her there to help me through the 4 hours of exercises everyday. Within about two months, I no longer had pain all the time. We probably made at least two more trips to the children’s hospital in Seattle during that time for check-in appointments.
I still have pain today, and will continue to for the rest of my life, but it’s amazing how something so bad can teach you so much about yourself and bring a family together. Probably the only reason that I didn’t lose it emotionally and completely breakdown was because both I and my family believed that there was hope for me and that we wouldn’t let my body take me down into the dark pit of illness with it. I understand that the essay was supposed to be about what I would do if I was faced with the same obstacles as Rhio, and I haven’t experienced cancer. But what I have faced has taught me a great amount about researching for yourself and never giving up until you have a cure and have “beaten” what is tearing your body apart.
By: Taylor, Alison K.