Ashley
My story began on Sunday, July 13, 2008, around 7:00 AM. It was the scariest day of my life. I had fallen asleep the night before on my bedroom floor and when I awoke I realized I could not feel anything below my waist. It was a very weird feeling. I tried to pull myself up using my dresser as an anchor and quickly realized it was not going to happen. Eventually I woke my dad up because of all the noise I was making. He came in the room and kept saying “Ashley, get up!” I was trying to make him understand but by now he was very confused and asked me, “What do you mean you can’t?” I told him “I can’t get up and I can’t walk!” Now my mother had also woke up and came into my room to see what was going on. Dad carried me like a sack of potatoes from my bedroom down the stairs into the living room. With all that had happened that morning I had not had a chance to eat anything and I was very, very hungry. Anyone who knows me will agree I love to eat and I wasn't going to miss a meal even if my legs would not work. Mom fixed me some cereal and then helped me lie onto the couch. They alternated putting ice packs and then a heating pad on my back and I went to sleep. I had just made the volleyball team right before this happened and had been doing vigorous workouts and training so my parents thought maybe I just had overdone it and pulled a muscle or pinched a nerve.
While I slept my mom called the doctor’s office to see what else they might to do and they told her to take me to Children’s Hospital. Mom helped me get dressed, fixed me some snacks and then they put me in a rocking chair, each lifted an arm and proceeded to carry me to the car. My dad put me in the car and we headed for the ER.
This was my first trip to the hospital and I was glad that it did not take long for them to call me back to start checking me out. They took my blood pressure and gave me some Motrin. After waiting a while, someone came and took me to X-ray then back to my room where a nurse came to prepare me for a spinal tap. Of course by this time I was hungry again so my dad went to Burger King to get us all something to eat.
When they came to do the procedure my mom left the room because she is terrified of needles. This was a good time to call the rest of my family. My dad sat there with me and I hummed to myself through the whole thing. When they were finished the doctor said it looked good and asked me if I wanted to see it. Curious as I am, of course I wanted to look at it.
The next procedure was to be an MRI. An IV was placed in my hand for contrast and that test started. I actually liked the MRI because of all the noise it made. After these initial tests were finished I was finally put into a regular room. That morning a nurse came and took 13 vials of blood. Then the steady stream of doctors, physical therapists and occupational therapists came in to evaluate me. At one point I remember waking up to my mom and the doctor looking me over from head to toe and checking to see if perhaps I had a tick on me since I had been at camp the week before. My diagnosis finally ended up being something called Transverse Myelitis. It is an extremely rare neurological disorder caused by inflammation across both sides of the spinal cord. It is caused from an unknown virus entering the body that the immune system does not recognize and therefore attacks itself.
I stayed in the hospital for a total of 12 days and did physical therapy five hours a day. I had to learn how to walk again. Once out of the hospital I did physical therapy six hours a day, five days a week. School started so my therapy was cut to three days a week. After more than 9 months of intense therapy I graduated from using a wheel chair to a walker, then “quad” canes, then one cane and eventually once again walking on my own. When I started to complain my mom would just look at me and say ”no pain, no gain." Words I have grown to love and hate.
I am one of the lucky ones when it comes to the devastating nature of this disease. It could have been a lot worse and I am thankful every day that I can walk again. This has been a long journey and while it was not easy, I was determined to defeat this if at all possible.
I have had Transverse Myelitis for over six years now and I just have to take each day as it comes. This has been an amazing experience both good and bad. “Good” is perhaps because of the progress I have made. And above all, all the wonderful people I have met along the way. ”Bad” because of the trials, difficulties, uncertainties and fear of the unknown. I have also lost some people in my life because suddenly I was different.
My hope for my future, now that I have graduated, is to continue to get stronger and to become one who helps draw attention to this very rare disease while they are searching for a cure; and, to also be one who is able to give hope, support and encouragement to others like myself who unexpectedly find their life changed in a single moment.
My story began on Sunday, July 13, 2008, around 7:00 AM. It was the scariest day of my life. I had fallen asleep the night before on my bedroom floor and when I awoke I realized I could not feel anything below my waist. It was a very weird feeling. I tried to pull myself up using my dresser as an anchor and quickly realized it was not going to happen. Eventually I woke my dad up because of all the noise I was making. He came in the room and kept saying “Ashley, get up!” I was trying to make him understand but by now he was very confused and asked me, “What do you mean you can’t?” I told him “I can’t get up and I can’t walk!” Now my mother had also woke up and came into my room to see what was going on. Dad carried me like a sack of potatoes from my bedroom down the stairs into the living room. With all that had happened that morning I had not had a chance to eat anything and I was very, very hungry. Anyone who knows me will agree I love to eat and I wasn't going to miss a meal even if my legs would not work. Mom fixed me some cereal and then helped me lie onto the couch. They alternated putting ice packs and then a heating pad on my back and I went to sleep. I had just made the volleyball team right before this happened and had been doing vigorous workouts and training so my parents thought maybe I just had overdone it and pulled a muscle or pinched a nerve.
While I slept my mom called the doctor’s office to see what else they might to do and they told her to take me to Children’s Hospital. Mom helped me get dressed, fixed me some snacks and then they put me in a rocking chair, each lifted an arm and proceeded to carry me to the car. My dad put me in the car and we headed for the ER.
This was my first trip to the hospital and I was glad that it did not take long for them to call me back to start checking me out. They took my blood pressure and gave me some Motrin. After waiting a while, someone came and took me to X-ray then back to my room where a nurse came to prepare me for a spinal tap. Of course by this time I was hungry again so my dad went to Burger King to get us all something to eat.
When they came to do the procedure my mom left the room because she is terrified of needles. This was a good time to call the rest of my family. My dad sat there with me and I hummed to myself through the whole thing. When they were finished the doctor said it looked good and asked me if I wanted to see it. Curious as I am, of course I wanted to look at it.
The next procedure was to be an MRI. An IV was placed in my hand for contrast and that test started. I actually liked the MRI because of all the noise it made. After these initial tests were finished I was finally put into a regular room. That morning a nurse came and took 13 vials of blood. Then the steady stream of doctors, physical therapists and occupational therapists came in to evaluate me. At one point I remember waking up to my mom and the doctor looking me over from head to toe and checking to see if perhaps I had a tick on me since I had been at camp the week before. My diagnosis finally ended up being something called Transverse Myelitis. It is an extremely rare neurological disorder caused by inflammation across both sides of the spinal cord. It is caused from an unknown virus entering the body that the immune system does not recognize and therefore attacks itself.
I stayed in the hospital for a total of 12 days and did physical therapy five hours a day. I had to learn how to walk again. Once out of the hospital I did physical therapy six hours a day, five days a week. School started so my therapy was cut to three days a week. After more than 9 months of intense therapy I graduated from using a wheel chair to a walker, then “quad” canes, then one cane and eventually once again walking on my own. When I started to complain my mom would just look at me and say ”no pain, no gain." Words I have grown to love and hate.
I am one of the lucky ones when it comes to the devastating nature of this disease. It could have been a lot worse and I am thankful every day that I can walk again. This has been a long journey and while it was not easy, I was determined to defeat this if at all possible.
I have had Transverse Myelitis for over six years now and I just have to take each day as it comes. This has been an amazing experience both good and bad. “Good” is perhaps because of the progress I have made. And above all, all the wonderful people I have met along the way. ”Bad” because of the trials, difficulties, uncertainties and fear of the unknown. I have also lost some people in my life because suddenly I was different.
My hope for my future, now that I have graduated, is to continue to get stronger and to become one who helps draw attention to this very rare disease while they are searching for a cure; and, to also be one who is able to give hope, support and encouragement to others like myself who unexpectedly find their life changed in a single moment.