My TM Journey

My journey with transverse myelitis began like so many others’ journeys with this disease: all of a sudden I had neck pain that was radiating down my arms. I spent the day (December 19th, 2009) trying to stretch the pain away but it continued to get worse. I was at the mall with my grandmother buying boots for a trip to Utah that I had planned with my partner, Jason. This was during my fourth and final year as an undergraduate student at New College of Florida. As the day progressed my neck pain got more severe. As soon as I got back to my grandparents’ house I laid down and I asked my grandmother for some ibuprofen and Icy Hot patches. It became so severe that I decided it was time to find a walk-in clinic. Earlier in the day I had done some googling and had diagnosed myself; I figured there might be something a doctor at the walk-in clinic could give me for my “pinched nerve.” I got out of bed and walked over to my computer to try finding a nearby clinic. I placed my right hand on my computer’s trackpad and realized I couldn’t move any of my fingers. I yelled to my grandmother “I can’t move my right hand!” At this point I realized I definitely needed medical attention but was still not aware of how severe my condition was. I gathered my belongings and walked out of my grandmother’s condo and to the elevator. While waiting for the elevator I almost collapsed, and my legs continued to weaken as I walked from the elevator to the car. I dragged my legs into the car and we sped away to the Emergency Room.

At the hospital I got an MRI almost immediately, of my cervical and thoracic spine, and of my brain. The radiologists noticed a signal abnormality between C5 and C7. At this point I had lost all sensation and movement from the chest down and had no triceps or finger strength on either side. I was started on high dose IV steroids that night, and in the following days received plasmapheresis, IV antibiotics and antivirals. The latter two were discontinued when blood tests came back normal. The only abnormal result was that my blood serum tested positive for mycoplasma pneumonia, although no doctor has ever definitively stated that that was the cause of my transverse myelitis.

I spent around two weeks in acute care, and was then transferred to a rehabilitation hospital as near to my college’s campus as possible (it was still 45 minutes away). I slowly gained some strength and sensation while at the rehab hospital, but also had some complications. I developed a mucous plug and needed to get a bronchoscopy to clear out my lungs. I required oxygen support and continued to have a persistent cough. I had to sit upright in bed because lying down caused me to cough uncontrollably, which then led to a pressure sore on my coccyx. I slowly recovered from both of these complications, but they were definitely a huge setback. I then returned to my rehabilitation program more determined than ever, with the support of my family and friends. While at the rehab hospital I also had to figure out how I was going to finish my last year of college. Thankfully, my professors and New College’s administration worked with me to figure out a way I could still graduate on time. Rather than actually conducting a psychological experiment for my senior thesis, as required by the psychology department, I was allowed to make my thesis a proposal for the study I was planning to do. I had also finished all my class requirements before being diagnosed with transverse myelitis, so I was able to not sign up for classes that semester.

I was discharged from the hospital after two months of intense rehabilitation, and went home to my house with Jason and my three cats. I continued doing therapy at home and as an outpatient, and continued to make very slow progress. My triceps, fingers on my left hand, and trunk control were much stronger than they were when I first became paralyzed. Jason served as my primary caregiver until we moved back up to my dad and stepmom’s house in New York City. Sadly, we had to leave my cats in the good hands of my cat-loving aunt until we got settled. I continued my outpatient rehabilitation in NYC, while Jason found a job and a place to live nearby. Around six months after arriving in NYC, I moved back in with Jason and we flew two of our cats back home with us (the third was very happy living with my aunt). I also made my first visit to the Transverse Myelitis clinic at Johns Hopkins where I learned about the International Center for Spinal Cord Injury (ICSCI) at the Kennedy Krieger Institute. At the ICSCI I learned about functional electrical stimulation (FES) and activity-based therapies. I use an FES arm and leg cycle at home and continue to go to the ICSCI every six months for a week of intensive therapy.

I knew I wanted to go back to school for a master’s degree. My experience with transverse myelitis gave me a greater understanding of the importance of health on all of our lives, so I decided to pursue a degree in public health. I was accepted to the CUNY School of Public Health at Hunter College and began my program in the fall of 2011. During my time at Hunter (December 2011) I was diagnosed with another rare neuro-immunologic disease called brachial neuritis. My body attacked my brachial plexus, which is a bundle of nerves that controls the arms. I was affected on both sides and lost the use of my triceps and the use of my right wrist flexor. I have since regained some strength, but I am not as strong as I was before the brachial neuritis. At around the same time I also tore a muscle in my rotator cuff (subscapularis) from pushing my manual chair and am still in pain from that injury. As the saying goes, when it rains, it pours! I graduated from Hunter in the spring of 2013 with a Master’s of Public Health degree and currently work as a Research Associate at a nonprofit called the Reproductive Health Access Project.

I never regained leg function (just some toe and ankle movement on the right side), and am still a C6/7 quadriplegic and a full-time wheelchair user. I continue to improve little by little, but am hoping for a “cure” in the near future, and I know SRNA is working hard to support research in this area. Being both a person with a rare disease and a wheelchair user has broadened my perspective immensely. I can’t say that I’m happy that this happened to me, but I am grateful for the insight it has given me. I have attended events that advocated for increasing the number of wheelchair accessible cabs in NYC (now less than 1% of the taxi fleet is accessible), and have tried to honestly share my experiences with friends and acquaintances so that more people are aware of the challenges people with transverse myelitis (and spinal cord injuries) face.

~ GG is currently a SRNA volunteer bringing her research, public health and communication skills to help us advance our mission