Raising Awareness, Gaining Strength and Improving Quality of Life

Being a mother of four and a surgical nurse, stomach viruses were nothing new to me. A little TLC and a lot of cleaning products, and it’s all over within 24 hours. In early February, 2005, a stomach virus began working its way through my family, culminating in a lovely Valentine’s Day where my husband and I became ill together. Everyone recovered fairly quickly, but as the night progressed I found myself feeling weaker, with numbness and tingling down the right side of my body. As morning came, I dragged myself downstairs to rehydrate from the previous day’s illness, and went to work just like any other day.

Over the next two weeks, I felt clumsy, stumbling and limping noticeably enough for my coworkers at the hospital to comment. I had less strength in my right hand and simple tasks were more difficult as I struggled not to drop things.  I went to see my primary care doctor, who listened carefully and after examining me told me that he felt I may have “something demyelinating.”  He told me to go directly to an emergency room for an MRI.

The diagnosis was very clear; an active lesion was seen on the right side of my spinal cord at C2, which explained my symptoms. I received a three-day course of IV steroids and evaluations by rehab therapies, and was discharged with instructions to follow-up with the neurologist.  My impairments were mild, and I returned to work the very next day.  In my many years of surgical nursing, I had never heard of transverse myelitis.  I called a neurologist colleague at the hospital where I work and confided in him what had happened to me. One of the first things he said to me was “Whatever you do, don’t Google it.”  It was too late. Panic was setting in. My colleague agreed to take me on as a patient, and it was comforting to be treated by someone who took the time to explain transverse myelitis to me in a way that acknowledged me as a health professional but also as a new and frightened spinal cord injury patient.

Over the next few years, I felt as though my weakness had worsened, and it was taking a lot of energy to walk. I participated in physical therapy on an outpatient basis, and continued to work full time. A forearm crutch made my walking safer and more efficient, but also drew an unaccustomed amount of attention to me. I felt uncomfortable but it was better than the dangers of falling.  In 2007, after complaints of weakness in both legs a repeat MRI showed a thoracic lesion as well, and I developed Raynaud’s phenomenon, which is a disorder of blood vessels that caused my fingers to turn white and blue and numb in cold temperatures. It was at this point that my neurologist turned my care over to a neuro- rheumatologist who diagnosed me with Sjogren’s and recurrent transverse myelitis. Not only did I have a rare neuro- immune disease, but now I had to count myself in with the extremely small proportion of patients with recurrent disease.

My family has been my greatest support through these years, but coming to an understanding of my illness has been a challenge for them. Before I walked with a crutch and leg brace, I looked “normal” to those around me including those closest to me. The pain, fatigue, and frustration were invisible, and it was difficult to explain why I couldn’t keep up with the rest of the family or made excuses to stay home because I wasn’t sure I could handle the walking. TM is a difficult concept for healthcare professionals, so you can imagine how difficult it is for family and friends to understand. My youngest two children don’t remember ever having a normal mom.

I document my experience for all to see for the first time in nine years of living with transverse myelitis, as many in our community have bravely done before me. It’s through these personal disclosures that we raise awareness, gain strength, and improve the quality of life of those around us. My journey has been one of struggles and extreme blessings. I’ve been able to continue to work full time, function independently, and further my education by attaining a doctorate in nursing practice from the Johns Hopkins School of Nursing. These are rare gifts for patients affected by TM, optic neuritis, ADEM, and NMO. Please join us in raising awareness and funds to further diagnosis, treatment, and research of these diseases, and to enable the Transverse Myelitis Association to provide support and fellowship to our community.

~ Joyce Maygers, DNP, One of the organizers of the Maryland Walk-Run-N-Roll Awareness Campaign. Support her efforts to raise funds for the Awareness Campaign here. You can also register or start your own team on the campaign’s main page!