If you can call anyone affected by TM lucky, I guess that would be Maggie for the first 12 years of her diagnosis. She was two when she was diagnosed with transverse myelitis. She recovered function, was ambulatory, had no bowel or bladder issues, had little pain, and had excellent family support and medical care.
In 2012, Maggie required leg-lengthening surgery to deal with orthopedic issues associated with her TM. Although we knew the surgery would be difficult, nothing prepared us for seeing our child with multiple pins screwed into the bone in her leg. Maggie’s pain was excruciating. She passed the normal time for post-surgery pain moderation and she lost access to pain medication. After five months, the pins and her fixator were removed and she still did not have pain relief. She spent the majority of her four years of high school in bed, and the final six months of school, she was completely bed ridden. We were told many things – “it’s depression”, “pain is normal for people with TM”, “she looks good for being in pain” – until out of desperation we flew to UTSW Dallas to see Dr. Benjamin Greenberg. He listened to Maggie – really listened to her talk about her pain – and he told us he thought that he could help. It was not a quick process, but we were making strides.
After graduating from high school, Maggie decided to attend Ithaca College, a small school in New York. Her decision was based on a 10-minute drive through the campus and because my sister lives in Ithaca and my brother-in-law coaches at the College. At the prodding of Dr. Greenberg’s nurse, Audrey Keech, Maggie enlisted the help of the Student Accessibility Services. She found she was able to control many things – where she lived, what time her classes were and where she could park on campus – so that she could manage school. She thrived in the college setting, but was still somewhat limited in what she could accomplish with her pain.
In January, 2016, Maggie had an exam with Dr. Greenberg. He adjusted her medication again, and for the first time in four years, I saw Maggie comfortable. I cannot underestimate how joyful it was to see our daughter, who had suffered for years, be able to function comfortably. The changes in Maggie over the past nine months have been miraculous. She has a social life, she can be joyful and excited, she is ambitious, she is witty and funny, and she is compassionate. There are still scars and trials as she has lost her optimism and still wakes daily from pain, things that she accepts as “normal”. We are also still trying to recover from years of dealing with her suffering and the toll it has taken on our family. Talking with others in SRNA community has provided a needed outlet for our sadness and we are slowly healing, but we now can see that Maggie’s “myelife” is truly hopeful.
Our hope for Maggie is a pain free existence where she can make choices based on her likes and dreams instead of her pain. SRNA has given us this chance by working with, supporting, and training world-class, compassionate medical professionals like Dr. Greenberg. We are truly grateful.
Linda & Bob M.
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