My New Life with Transverse Myelitis

By Roger Ethier

June 28th, 2011 was a morning like any other morning. I woke up early, at about 5 a.m., and gave my father-in-law a ride to work. When I got out of the truck, I noticed my left leg felt like it was falling asleep. I didn’t think anything of it and went and got my dog ready to take our morning run. By the time I got ready and grabbed my dog, I noticed that my right leg had started to feel funny. My leg continued to feel strange when I was about a quarter of a mile into my walk and was about ready to start jogging. Again, I didn’t think anything of it and proceeded to run. I didn’t make it far before I realized it was getting difficult just to walk, and if I didn’t have my dog with me, I don’t think I would have made it back to my house. I didn’t know what was going on! I had gone fishing the night before and put on a strong bug spray, so I thought that maybe the spray was reacting to my skin. My legs felt like they were on fire, and even though it felt like they were being pricked with pins and needles, I proceeded to wash my legs thinking it would make them feel better.

It was just the opposite. As soon as I touched my legs, I realized how sensitive they were. I was starting to get scared, but I didn’t want to show my fear to my girlfriend. I told her to give me a couple minutes to see if they would start to feel better, but they did not. She drove me to the hospital and by the time I got there, I could barely use my legs because they were so stiff. I felt like if I had bent my knees, I would have just collapsed. I had been to this hospital before, so one of the employees recognized me. She quickly realized this was not how I normally would appear or present myself and quickly got me a wheelchair. She took me straight into the hospital. No one really knew what was going on, because within hours of being awake, I went from feeling perfectly fine to now being numb up to my chest and not able to use my legs. One can only imagine how scared I was!

I didn’t know it but I was very lucky that day, for I had woken up before the disorder started to take full effect, and I did not wake up without the use of my legs. They put me in a room and my girlfriend had to leave. I told her, “Don’t worry, hon, I’ll be fine. Within a few hours, I’ll be calling you for a ride back home.” Instead, they moved me to the ICU. I am not a stranger to being in a hospital – I was in a bad motorcycle accident when I was younger. I was in a coma for several days and lost the use of one of my arms, but I’d never been so scared in my life as I was now. No one knew what was going on with me, and I was now paralyzed with only the use of one arm. If it wasn’t for the care of great nurses and a great doctor I don’t know how well I would have done mentally, but they kept me strong. I also got by with the help of my great girlfriend who knew somebody years earlier who had transverse myelitis! She started to think that it might have been transverse myelitis long before the doctors did, but what were the chances of such a rare disorder?

The next day they started a blood cleaning process, and within just a couple of treatments I started to get feeling in some of my toes in my left foot. It was painful, but it was feeling. After 11 days, the doctors narrowed down my diagnosis to transverse myelitis. I had been scared not knowing the real answers – now I was scared knowing the diagnosis, but at least now I could contact my family up north. They were thousands of miles away from me and there was nothing that they could do. I didn’t want to worry them, so I didn’t let them know I was in the hospital. Finally, I got the strength and the nerve to tell them, and I called my oldest brother. I’m the youngest of the family and my brother’s wife is a nurse. I figured I could explain it to them first, and then they could explain it to my mother – she is in her 80s and I was very worried for her health.

So here I was, about two weeks into the scariest moments of my life. I only had one working arm (my right arm) and barely the use of one leg (my left leg). This at least allowed me to use a wheelchair in the hospital. I was very lucky that people were very motivated to help me! They would help me get into my wheelchair and let me go all day long, but my adventure was just about to begin for it was now about 30 days into my hospital stay, and it was time for me to start my rehab. Once again, I was quite scared. I was moved to a new hospital where I didn’t know what to expect. The morning came and I was greeted by a new doctor, one that told me a joke every morning and made me laugh. It was the best bedside manner I could have ever imagined, and the rehab nurses were second to none! They were all friendly unless you needed a good kick in the butt, and then they were there to give you that as well. They taught me how to get myself out of bed and into my chair – now they couldn’t keep me in my room! I was up and gone all the time. Physical rehab was no different – they gave me exercises to do and I pushed myself harder than they could have imagined. I insisted they give me ankle weights to bring back to my room. Every commercial, as I sat back and watched TV, I did some sort of movement or exercise. In my mind, every time I bent my toes or my legs in any way, shape, or form, it was an exercise, for my muscles had become so weak.

The next 30 days came and went pretty darn fast, and before I knew it, they were sending me home. My first night home, I stood out of my wheelchair by the stove and cooked dinner. It was only sloppy joes, but it was like cooking Thanksgiving dinner to me! I had a lot of friends for support. My girlfriend was there, thank goodness! She was truly my rock in all of this, but that didn’t stop me from feeling like I was all alone in this. The outpatient rehab that was set up wasn’t enough for me – they wouldn’t work me hard enough. They were strictly go-by-the-book, and it was simply costing me too much money. Since I wasn’t really getting anything out of them, I quit them and started going to the gym. When I first started, I would go 5 days a week, Monday through Friday, and I would put in hours at a time. I really didn’t have anything else to do all day other than sit home feeling sorry for myself – stuck in bed or in a wheelchair in a house that I couldn’t move around in. So off to the gym I would go, and that’s how it went for the next couple of years. I wouldn’t stay still and I never stopped trying. I pushed myself in my wheelchair up and down my street as many times as I could, and as I got stronger, I was able to use a walker and then a cane. I continued to make my distances farther over time.

When I was in the hospital bed nearly completely paralyzed, I was scared of all the things that I would never be able to do again that I loved: walking on the beach, swimming, going for runs every day. The finer things are just walking and dancing with my loved one, and I swore to myself that when I got better I would do more of these things and do things that I’ve never done, like run a marathon! So, two years ago, I ran the Susan G Komen 5K cancer run, and I’ve now done it twice. Last year, I also went up to Boston and did a SRNA Walk-Run-and-Roll for a young boy named Noah and his beautiful family. I was 40 when I first got struck down by this disorder, and it horrifies me when I see and hear of these young children that it happens to; it breaks my heart.

I still work out two or three times a week. I still push myself as hard as I can, and every day I go to the gym, I leave feeling better than when I went in. My legs feel better – they don’t sting or burn as much as they did when I went into the hospital.  I also feel better mentally. I still have a long way to go, though I’ll probably never be 100% again. I am getting older so I’ll never be as strong or as fast as I once was, but I’m just trying to get full mobility back. It’s been almost six years since that first day, and I have not had a relapse. I guess I’m a lucky one, but I like to think that my hard work and the excellent care from the nurses and doctors from the hospital had a lot to do with it. I hope to encourage all, especially the young ones to never give up and always continue to try! My left arm was completely paralyzed back in 1986 due to a motorcycle accident; I’m not a doctor, but from all this hard work and perhaps from the transverse myelitis episode, my body may be trying to regenerate itself as I now have partial use of my left arm back! I know it seems impossible sometimes, but the best thing we can do is keep positive attitudes and just keep trying, and maybe one day things will be better. I want to give special thanks to Angela, the greatest physical therapist, Rosemarie Melhandodo from the Florida blood center, Juan, my ICU nurse, Dr. Gabriella, MD and Dr. Lochner, MD, and the biggest, most special thanks to one of the greatest people in the world, Shawna Dugger, for always being my rock.