Hi, my name is Samantha and I’ve been living with Acute Idiopathic Transverse Myelitis for approximately 11 years. I’m writing you to tell my story to hopefully gain more of an awareness of Transverse Myelitis.
I was 14 years old and a very athletic teenager. I would wake up almost every day and start my mornings out with a couple miles run. I was active in volleyball, softball, and basketball but had made the decision that year that I would quit the other sports to focus on softball. We had just finished up our last summer softball tournament for the summer, and the day before my attack, I completed my high school orientation. I was very excited to start high school where I could choose my own classes and gain more educational freedom. The day after my high school orientation, I had completed my morning run and decided to help my Step-Dad with some office work for the company he owned. As I was standing at the fax machine, I felt this excruciating pain down my back, what I like to describe as “hit by lightning.” Confused as to what this pain was, I walked to my sister’s bedroom, which was right next to my Step-Dad’s office, and lay down in her bed.
The pain subsided quickly so I went back to my previous tasks and called my sister informing her of what happened and suggesting we postpone our planned shopping trip that day. After taking some ibuprofen, my sister and I decided to go shopping despite the pain I had experienced. While shopping, my sister and I noticed I was walking with a limp, which I couldn’t control. When we got home from shopping, I was talking to my Mom about what had happened and how I now was walking with a limp. She believed that I had simply pinched a nerve or slipped a disc in my back, so she called a family friend who is also a massage therapist and asked her to come give me a massage the next day. The next day rolled around and I hadn’t developed any new symptoms overnight, so I was hopeful that this massage would take care of my limp. After the very relaxing massage, I proceeded down to the basement. When I reached the bottom of the stairs, I felt the “hit by lightning” pain again, except this time it was much stronger. I dropped to the ground instantly. When the pain subsided, I went to get up and realized I couldn’t move my legs. I was home alone. I army crawled to my bedroom to get to the phone and started calling my family members. I finally got through to my brother who came to my rescue. He carried me up the stairs and drove me to the hospital.
After hours in the Emergency Department, I was sent home with a diagnosis of a conversion disorder. Unable to urinate, walk, or feel anything from my belly button down, my mom restricted my fluids in fear that something detrimental could happen. The next morning my Mom decided that something wasn’t right and decided to get a second opinion. My Step-Dad carried me to the car and we started the hour-long drive to a larger hospital. Within an hour of arriving at the hospital, I was being prepared for transfer to a higher level of care. The Emergency Department physician had told us that I had one of two disorders: one of them was Transverse Myelitis. He then explained that I was unable to stay at that facility because they did not staff a pediatric neurologist. I was sent to Children’s Hospital in Minneapolis where I spent two weeks slowly gaining some of my mobility. After two weeks, I was sent to Gillette Children’s Hospital to continue my rehab.
I returned home after two weeks there and was finally able to start school, a month later than every other student. Over the next year, I was able to graduate from my wheelchair to a walker, then to crutches which I used for the next two years. My last day of my junior year I decided I no longer wanted to use crutches and began walking on my own with the help of Ankle Foot Orthoses. The rest is history! Eleven years after my attack, I am now working as a Registered Nurse in the Emergency Department full time while continuing my education to become a Nurse Practitioner in my spare time. My love for medicine and helping others is most definitely related to my time in hospitals as a teenager and my diagnosis of TM. It has been a real blessing in disguise.