Until I was 13 years old I had no idea how to even begin to face personal obstacles. My life was all about school, music, and having fun. I considered these as normal activities for normal able-bodied teenagers. I did not know anyone who was physically challenged. I worked hard in school and was on the honor roll. I was one of the gang playing in the neighborhood. I played soccer, basketball, and other games outside with other neighborhood kids. I also played classical piano and jazz clarinet in the Mount Vernon Youth Symphony Orchestra. I also enjoyed our family vacations. In 2001, while on summer vacation, my mother noticed that I had scoliosis, a severe curvature of the spine. We went and saw a specialist about installing rods in my back after we got home. He painted a very rosy picture about the operation and the several month recovery process. On 8/27/01, I had my scoliosis surgery. The surgery was unsuccessful, and the doctor said he wanted to repeat the surgery in two weeks going in from my back and not my side as he had tried to do this time. We agreed, but we all were concerned about the first surgery and the soft bones he said he observed in my back. He, however, was confident in his ability to put the rods in during a second surgery. On 9/11/01, I had my second surgery. That's right, the same day as the worst terrorist attacks in our country's history. Even though I was not on one of the fated flights or their targets, I believe those attacks also affected my surgeon and my surgery as I suffered spinal cord trauma during the surgery that totally changed my life. I was and am one more victim of those terrorist attacks. We went in for the surgery at 6 AM. By the time my surgery was underway the World Trade Center and the Pentagon were attacked. I was under anesthesia, but my parents told me the hospital was closed during my surgery as they awaited victims from the Pentagon, and TVs were turned on everywhere in the hospital as people tried to understand the horrific events that were unfolding. The rods were placed but I did not recover. Unfortunately, I'll never know for sure if I had the surgical team's full and proper attention. I did not fully realize it then but my mind set was irrevocably changed, and I began to have a series of challenges that most people don't experience during their entire life. I was not immediately a quadriplegic after the surgery as some people are after a severe car or diving accident, but I had immediate problems with my feet and hands. I had severe pain and tingling and could no longer walk normally. My condition mostly worsened from that time until approximately two years later. Because the surgeon did not want to recognize his likely role in my paralysis and neuropathy, he told us that, "I was faking it and I was just being dramatic." After I did not recover, he was sure that there must have been a genetic disorder that caused the problem and I was tested for numerous neuromuscular diseases. All those tests came back negative. To this day, neurologists still refuse to acknowledge that the surgery caused my quadriplegia and neuropathy and they continue to look for a genetic cause. Meanwhile, my pain and body control continued to worsen. The first year after the surgery I was able to attend school with my regular class. I had to have someone carry my books and walk with me as I frequently fell and was very slow. The second year I had a power scooter. The third year I was in a wheel chair and was in special classes with other physically and mentally challenged students and lost all but one or two of my friends. I was angry and sad. During this year I began to have bladder and digestive problems. I was in the hospital a lot. The worst was yet to come as I lost my sanity when my CO2 rose to dangerous levels and this was not properly diagnosed. I was on white blood cell treatments for five days every month for 18 months starting in December 2001. The day after the last one in June 2003, I was in my parent's bed, and I sat up and started gasping for breath. It was around 1 AM, and luckily my brother was still awake. He carried me out to the car, and we went back to the hospital. When we got there, they misdiagnosed me with constipation. The only person I knew was my brother. I kicked everybody else out of my room. A doctor my family knew was on call that evening. She took my mom into the hallway and told her I was in very critical danger. My mom told her we have an appointment at Johns Hopkins tomorrow. She replied, "don't miss it." The next day I had to take an ambulance to Johns Hopkins Hospital. My mom gave me oxygen the whole ride because I was blue in my face. When I arrived I was promptly admitted. My CO2 levels were over 100, I had a collapsed diaphragm, pneumonia, and I was in respiratory distress. The scariest part was that I suffered a cardiac arrest for almost 13 minutes shortly after arriving and was placed on a ventilator for life support. After that, I was in intensive care for months and did not recognize my family who were always there during that time. I was then placed in different medical institutions as my family worked out how they would be able to take care of my needs at home. As you can see not only was I impacted but my family's top-down processing all had to be reworked with keeping me alive the priority. I have been in a wheelchair and on a ventilator since June 15, 2003. I have had countless surgeries and what seems to be an infinite number of injuries. Until coming home in February of 2005, I went from Johns Hopkins Hospital in Baltimore, MD to Kluge Children's Rehabilitation Center in Charlottesville, VA and then Iliff Nursing and Rehabilitation Center in Falls Church, VA. Finally, I made it back home with my parents and nurses as the caregivers. That has worked well even though I've had many more hospitalizations and recovery periods mostly relating to open pressure wounds. I have immense gratitude and sympathy for the people that have been affected by the incident that happened on 9/11/01. Since then, I have made some new friends and many of these new friends have also had life-changing experiences. I have much love and appreciation for their friendship and challenges. My name is Elisabeth, I am sharing my story for everybody who can't or won't.
