My name is Janelle Healy and my journey with Transverse Myelitis began six years ago on January 19th, 2013. Just as many other stories go, my day on January 19th started out normally. I went in to the restaurant I worked at to prepare some upcoming lesson plans for my student teaching semester of college. While sharing lunch and working on lessons with a friend, I noticed my left hand begin to go numb, feeling as if I had been leaning on it awkwardly and had fallen asleep. After a few minutes the numbness started to slowly progress up my left arm and we decided it would probably be best to get checked out, so my friend brought me to the local ER near school. As I waited to be seen, the numbness continued to spread, working its way down my right arm. I was still able to walk back to the room where I would be seen, but both of my arms were motionless and felt like heavy weights. Over the next six hours, I lost my core and felt the numbness advance down my legs—I even begged my friend to punch my left leg because I swore that would do the trick and stop the sensation from spreading. After approximately 9-10 hours, I was a quadriplegic. I could barely move my head from side to side and was only able to speak 1-2 syllables at a time because my breathing was also affected.
I was lucky in the fact that I was officially diagnosed with Transverse Myelitis from my C2-C7 vertebrae within 24 hours of my initial symptoms. They started me on heavy doses of IV steroids immediately following the formal diagnosis, and over the course of my entire treatment I also received 7 plasmapheresis exchanges and two rounds of Rituximab. Since then, I’ve spent years going back and forth to physical and occupational therapy sessions, countless hours going to doctor appointments and having testing done, but most importantly I’ve spent time and a lot of hard days finding a new me with TM in my life. I had a major career change from being an English teacher to pursuing my master’s degree, and now having my dream job as a Vocational Rehabilitation Counselor, helping other individuals with disabilities every day. I’ve tried adaptive skiing, mountain biking, horseback riding and canoeing/kayaking and fell in love with sports all over again. I even moved across the country to San Diego, CA because as I like to say, you don’t learn anything or grow in comfort zones. What keeps me going is allowing myself to have those bad days, to miss having a properly functioning body, and to keep adding more dreams and goals to what I want to achieve in life.
The most difficult part of living with Transverse Myelitis is knowing and accepting my current limitations, while continuing to try and push past those limits to allow for growth. It sounds complicated, but I feel like many in similar situations can relate. The first part is recognizing when I’m reaching my limit physically and emotionally, but mostly physically so that I do not hurt myself. If I try to do too much within a day, whether it be walking, utilizing my electric stimulation bike, trying to clean up around the apartment or even not recognizing how long I’ve been standing for, my body will let me know the following day when my legs and other muscle groups simply do not want to move from overuse. But, I’m stubborn, so I always try to push past my known “limit” of useful functioning to see how far I really can go. In the moment it’s wonderful listing all the things I could accomplish, only to struggle to get out of bed and get to work on time the next morning. So, the second part of trying to push past those limits is extremely difficult because I still can’t seem to find a healthy balance after 6 years. A main reason for this is because we live in a world where everything else is instant gratification, but when I am merely trying to function like a “normal adult” there is no instant gratification.
What I’m hopeful for is honestly a loaded question. I’m hopeful for so many things, I’ve had so many hopes since being diagnosed and I think that is what has helped me continue to live despite all the negatives and difficulties associated with TM. It’s important to have big hopes and smaller hopes, in my opinion. The hope for more awareness to continue to spread, for success with new drug trials to aid in treatment options for TM and other rare neuroimmune disorders, and the hope for more compassion and understanding because everyone deserves that. Also, the smaller hopes that I have more control over. The hope to one day walk down the aisle to marry the man I love and am fortunate to have in my life as my best friend and support, the hope that each week I’ll continue to stay motivated in my recovery, and the hope that through my involvement with SRNA and my candidness that I’ll be able to help one person feel less alone. Hopes to me are integral, and ever changing—just as I hope the knowledge of TM and other rare neuroimmune disorders will be ever changing and advancing.
Janelle Healy
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