On April 18, 2008, my life took an unexpected turn. I was 19 years old and was involved in many sports, particularly soccer. While I was home for spring break during my freshman year of college, I went to get a cortisone injection for a sore shoulder. After the injection, I had an adverse reaction leading to paralysis and spasticity. It was one of those rare events and none of the doctors knew what happened. I was diagnosed with Transverse Myelitis (TM) with symptoms of muscle weakness, neurogenic bladder, loss of sensation, nerve pain, and spasticity. I was in a wheelchair for about 4 years and went to physical therapy on a daily basis. During this period, I received an implanted baclofen pump, which helped me to regain the movement needed to walk. I was finally able to make progress in physical therapy once my spasticity was under control. The ability to stand and take steps was life changing for me. I have had to have additional surgeries since then, which have caused some setbacks in my recovery.
During these 4 years, I transferred to a college closer to home and kept pursuing a degree in biology. Going to school became my primary focus. I graduated cum laude from college in December 2012 and was able to walk across the stage with my Lofstrand crutches after attending all of my classes in my wheelchair. I was thrilled to have met the goal of walking across stage to receive my diploma!
While going to therapy on a daily basis, I started working at the University of Louisville spinal cord injury research center. I also took additional college classes necessary to apply to physician assistant programs. Knowing that I needed healthcare experience for my applications, I left the research department and became a scribe at a pediatrician office. This solidified my desire to become a healthcare provider. Throughout this whole process, I have become more determined than ever to keep moving forward. I am now in the LMU Physician Assistant program and plan to graduate in August 2018. My hope is to work in the field of neurology as I would love to help individuals with TM and similar conditions.
Letting go of things I loved doing before my disabilities was a very hard part of this journey for me. I felt as if I had to find a new identity because my identity prior was a soccer player going to college. I lived a very active lifestyle prior to my diagnosis and now I was no longer able to play sports, which was sad for me. There were times when I would have to cancel plans with friends when I was in the wheelchair because of the fear of my chair not being able to get into facilities and just having to be so needy for my friends. One time I was at a restaurant when my wheelchair kept the bathroom door from closing. Often, friends had to carry me up steps to enter apartments and on occasion my wheelchair did not fit through a door opening. At times, I felt that I would be too much trouble for my friends. I would also have to cancel plans at times because of physical exhaustion from physical therapy and constant muscle spasms.
I will always grieve my losses to an extent, but I have turned that energy and focus into doing well in school. I have found other hobbies that I enjoy, like going to movies and sport events with family and friends. I drive my car with hand controls and this gives me freedom and the ability to not always rely on other people to go places. I enjoy travelling and by going to new places and visiting people I feel normal and like I use to feel. I plan to continue to travel and would love to go on a medical mission trip whenever I find one that can accommodate my physical needs.
My advice for people who have the same physical disorder as I do is to continue to push for a correct diagnosis. Diagnosing rare neuro-immune disorders like TM in a timely manner can be very challenging. Neurological conditions require a great deal of medical care and sometimes it can be hard to find the right doctors that can make the appropriate diagnosis. This is probably the hardest thing to do and it takes good healthcare and family/friend support to keep looking for answers. Once you have found a diagnosis, you have to accept the results and push yourself further than you thought you could go. You can excel with the limitations that you have. I try to not look backwards, complain or be complacent. I have found that having a positive outlook has helped me to continue to pursue my goals. I urge those with the same disorder to continue living their lives to the fullest despite their diagnosis. Life is what you make of it and I believe having a positive outlook is a major key in being successful.
Getting to know others with the same condition is also helpful because it allows you to learn how they have adapted to life with a disability. No one truly understands what it is like unless they have firsthand experience. The Transverse Myelitis Association (TMA) is a great organization that provides helpful information about TM. They do family weekends that you can attend and meet others with your same condition. I went to a family weekend when I was first diagnosed and it was very helpful and gave me a sense of hope.
I believe that I have changed by using my strengths and my weaknesses. I have learned to use my strengths of determination and hard work ethic to push myself. My weaknesses or character flaws have helped me as well. My “stubbornness” and “ability to fixate” can be used as perseverance and positive outlook and both of which have kept me moving forward. Looking at what you cannot do serves no purpose and seeing what you can do is the best technique possible to be successful in overcoming physical and psychological challenges. Giving up was never an option for me. My advice to others is to keep moving forward and do not look back.
