Diagnosis: Transverse Myelitis

Illinois, United States

On September 6, 2005, I got up as I had done every day for 23 years. I was getting ready for work in a new position in Human Resources that I had just transferred to from a previous role with the Chicago Public Schools. My first nephew was born just the day before and I couldn’t wait to go visit him and my baby sister, Crystal, at the hospital once I got off work, or so I thought! As I was getting ready, I went to the bathroom like most people do first thing when they wake up in the morning. As I sat on the toilet, the rug beneath my feet started feeling funny against my toes. I didn’t feel right. I tried to ignore it and went ahead and showered. As I sat on the side of my bed, I started to feel a pain I had never felt in my life. I felt a sharp and shooting pain run up my legs. I thought I was having an allergic reaction to something I had eaten or the shaving cream that I had used on my legs over the weekend. I sat there in pain trying to figure out what was happening to my body. The best way to describe the feeling was as if someone had taken a live electric wire and attached it to my legs. After trying to stand to dress myself, my legs gave way and I toppled to the floor. I knew I had to call 911.

I was taken by ambulance to the local hospital and admitted from the emergency room. My first hospital admittance ever. I was unable to urinate on my own, so a Foley Catheter was put in place. Over the next week, I was given a series of tests: MRI, CAT SCAN, spinal lumbar punctures, and blood tests. I didn’t know or understand what was happening to me. My entire body below my waist was not working. I could not walk, stand, or use the bathroom on my own. I felt like I was the patient in an episode of the Fox drama ‘House.’ I was devastated. After two weeks of testing, I was finally diagnosed with Transverse Myelitis. I had a lesion on the very tip of my spine that affected my lower extremities. I had never heard of this disorder and I had no idea what this meant going forward. I cried every day for weeks and honestly, I still do at times to this day. I ended up being hospitalized for two months. Doctors said my chances of walking again on my own were very slim. I was one quarter away from graduating with my undergraduate degree in Business Administration, but had to drop out of school that quarter. My life changed forever that September 6, 2005 morning.

Over the next several months, I went through intense therapies. I started to gain sensation on the left side of my body, but very little returned on the right side. I returned back to work on a walker in December 2005. I had completely lost control of my bladder and had to learn how to intermittently catheterize and use protective undergarments. This had to be absolutely the most challenging for me as a young woman under 25, but it was a new way of life for me and I had to adjust. I was able to return back to school and went on to graduate with my Bachelor of Arts in Business Administration with a concentration in Human Resource Management in June 2006 and received my MBA in December 2008.

I realized that I was not going to stop living at 23 years of age, and that I still had my whole life ahead of me. I was determined that although this happened to me in my life, I was going to hold my head high and fight to live THROUGH it and not let it defeat my purpose for being in this world. I have been working full-time in higher education since 2007. I have made much progress over the years, but the struggle is very real on a daily basis. I battle depression, pain, and overall just accepting living life with a disability. I have learned to manage through severe bladder dysfunction and numbness on my right lower extremities. I have very limited function of my toes and walk with adrop foot. I wear an AFO device on my right leg. Despite these major changes in my life, I have continued to push forward. I continue to pray for a full recovery, no matter what the outlook may be or seem. In the earlier years, I often worried about the ability to have kids on my own. My primary physician assured me that my reproductive organs were intact and operating as they should. So my hope is that my husband, whom I’ve yet to meet, finds me one day soon and accepts me for all that I am. Until then, I have two amazing nephews, my youngest lives with me to keep me young, busy and active; I adopted him after my sister, Crystal, passed away as a result of a fatal automobile accident in June 2010.

I became a member of SRNA in 2007 after I found them in an online search for more information about Transverse Myelitis and what happened to me. I wanted to learn if there were others who have experienced what I had. I found a wealth of information, much that I had not even heard from my clinicians. To my surprise, I was contacted in 2013 by Nancy Dove to join a volunteer group in Illinois to help plan the Illinois Walk-Run-N-Roll event. After that experience, it made me feel so humbled and grateful for how far I’ve come. I saw so many young children, much younger than me battling even tougher residual effects of neuroimmune disorders like TM. I was and still am so proud of all my fellow participants and their families for their courage and strength to share their stories. It is so empowering to hear how they have overcome the obstacles so many of us all share. For now, I do not let this neuroimmune disorder stop me from setting goals, putting forth effort, and believing that I can do all things through God who is the provider of my strength.

Cicely Anderson