In Their Own Words

Seventeen years and a few hours ago I was sitting at my desk at the University of Cincinnati. As I sat there, I noticed that both feet were tingling. I looked down and found that I had my feet wrapped around the base of my chair. I straightened my legs, finished my appointments with my students, walked to my car and went home. Since I was walking normally and did not feel anything unusual, I simply brushed it off. That evening, the numbness worked its way up my leg. When I went to bed, I noticed that the numbness was just below my knee. The next morning I felt some numbness in my rear end, a sore spot on my left shoulder blade and the numbness in my left leg continued but was now just above the left knee. It was Veteran's day so my youngest son was home. I took him with me to Louisville to do some business. We also ran a few errands and headed home. We were about ten minutes out of the town when I felt a rush which was warm but just an intensified buzzing and this tingling numbness moved from above my knee to just below my left breast (T4). My biggest concerns at that point were that I could not move my left leg, I was driving and I had an eleven year old with me. I considered going back to Louisville but then decided that it was only a momentary thing because I must have hurt my back with all the lifting I did over the weekend and it was going to stop. Also, I knew the doctors and hospitals better in Cincinnati. I said nothing to my son and continued. When I arrived home, I used a folding chair as a crutch and walked into the house. I rolled over the back of the couch and lay quietly. As I lay there, I could feel the tingling begin in my right foot and move up my right leg. I was only slightly frightened because I had been reading medical reports for years and I knew that I had simply pinched a nerve in my back. When dinnertime came, I could not walk to the kitchen, so my family helped me into a kitchen chair with wheels and wheeled me to the table. I still felt confident in my self-diagnosis. After dinner I called my family physician and related my symptoms. I told him what I had done over the weekend and that I thought I had injured a disc. His response was, “I don't think so” and he sent me to the hospital. The ER experience sucked. I had an obviously new physician who used the business end of a hypodermic syringe to scrape across my chest to see if I could feel it. By chance one of the better neurologists in town was on call that night. When he saw my chest he said it looked like a cat had slid down me with its claws extended <g>. He did a spinal tap and for some reason I didn't feel it (ha ha). He ordered a mylogram for the next day (that's all they had in the dark ages - 1981) and it revealed no tumors or other problems. I had a very bad experience with the mylogram because my muscles were so spastic. I couldn't lay flat or still because of the lower body spasticity and pain. Because I didn't keep my head motionless, I got one of those infamous headaches due to the dye. It was the worst headache and pain that I ever had. As if my day weren't going badly enough already, my doctor gave me the diagnosis. Acute Transverse Myelitis. The next day I called my eldest son (14) and had him read the diagnosis, prognosis etc., from the MERCK manual. After hearing this and being able to move my feet ever so slightly, I knew that it was a passing thing. Interestingly, there was a major article in the “Journal of Neurology” on Transverse Myelitis (TM) earlier in 1981 and it discussed the use of steroids in the treatment of TM. Later that day he had them begin ACTH once each day for five days. During these early days, I was able to maintain a positive attitude and went as far as having my students come to the hospital and taught my classes from my hospital bed. DeNile aint just a river in Egypt.

After about a week, my neurologist wanted me to stop using my catheter. There were a few abortive attempts because I was just unable to go and then I asked him if I could have beer figuring I knew I'd have to go if I drank one. He said that he couldn't authorize it but if I were to have one, it would not hurt me. The next day when my students came for class and after a few hints, they brought a surprise in brown bottles and into the refrigerator they went. Three days later I could go. No more lugging the bag around. For my efforts I was rewarded by being sent to the Physical Torturist, I mean Physical Therapist. The first morning I stood. That afternoon I walked a little with parallel bars. Two days later he sent me home. During these days in the hospital I asked myself Why Me? But I never did answer myself and a little Elavil seemed to take care of the depression. In addition to my students, other faculty members, my former wife and one of my sons visited me. One son seemed to avoid visiting and if there was a reason I do not remember clearly what it was. I guess because of the reading I had done, the support I had received from everyone and what my neurologist had told me, I adopted the position of "what you see is what you get". In other words, I had to deal with my limitations but I always considered myself lucky because my disability and physical limitations could have been worse.

Three months later I started back to work on a part-time basis. I never did return to full time work. My body had told me that enough was enough. The stress had been too much. Working for someone who did not like me for 40+ hours per week, starting a private practice in Cincinnati and Lexington and Louisville, Kentucky and working constantly on a house that I could not really afford. I also started driving. I had no idea that you could drive a car without being able to feel the pedals. I wonder how many of us have done or are doing that. During the next 18 months I experienced some minor improvements but nothing of real significance. By my anniversary date in 1983, the medical establishment had acquired a CT scan machine in the City of Cincinnati. Like so many of us with TM, my results revealed no abnormalities. Also, in 1983 I tried additional physical therapy but found that the more active I was the more spastic I was and the more spastic I was the more pain I had. Enough was enough. By 1986 Cincinnati had a MRI. My neurologist showed me my MRI and one of someone who had MS. Even I could see the difference. Mine showed absolutely nothing and the MS patient had very clear white spots (plaque) on the cord and on the brain. For years after that I served as guinea pig for my neurologist's students. Not one student made the correct diagnosis. I have routinely asked general practitioners to make the diagnosis and they also failed. In 1996 I spent nearly three months in the hospital and it was a constant task to educate the nurses and physicians on transverse myelitis. The realization that TM is extremely rare, 1:1.2 million was really driven home.

As of today, I have had no exacerbation's. I still have marginal control of my bowels and bladder and I have a fair amount of spasticity. My most significant problem is a central pain syndrome at T4, the point of my compression/lesion. I have a band and the pain is constant. I take a lot of pain medication and have tried acupuncture, massage and magnets and none of them provided me with much relief. I do know others who got relief from all three. Until two years ago, I was walking with that awkward gate that TMers know all about. You know, the one where we have to look down at our feet to know where they are at and our locked knees so our legs won't fold. My neurologist said that the main reasons I did walk was because I wanted to. I encourage all of you who even think they can to try. Lock those knees and go at it one step at a time.

For reasons other than TM, I lost both legs, one above and one below the knee in 1996. The medical procedures required twelve separate surgeries. They utilized a local anesthesia that allowed me to sleep through the operations with no complications. So like many of you with lupus, epilepsy and other ailments, I have the pleasure (yaga) of a secondary problem. But guess what?? People now recognize that I have a disability because they can see me in a wheelchair and my legs are missing. We don't need the reminder, but others do that just because one can't SEE the disability, it does not mean that a person is a malingerer.

I had better stop now or it will begin to start sounding like I'm having a pity party for myself. I can say that my experience has made me a stronger person. For the newbies, in particular, I would say, remember to rely on the strengths that have gotten you this far. Keep your faith in yourself, those around you and whatever higher being is yours. Keep a positive attitude and reach out to those around you and don't be proud -- everyone needs help, it is just a question of how much and what kind. Also, don't forget to do mind and body exercises. If you don't use it, you will loose it and I do mean ALL body parts both above and below the neck.

I have been with the group (tmic-list) on line since early 1997 and cherish the support and input from the group. I tried to keep a discussion group on TM going in the early 1990's on Prodigy but just couldn't keep people involved nor did I have the skills of our Jim Lubin. I wonder how many of them are now on the tmic-list or in TMA and we just don't know it? I have had my picture posted on the tmic home page and really wish more people would do it even if they are not part of the on line chatting. I'd be happy to scan any pictures for those who do not have the equipment to do it. My wheelchair and I will be in Seattle next August and I look forward to meeting you all.
Roger Livingston (Doc)
doc09[AT SIGN]fuse.net

Maureen Wroblewski
Rochester, New York

Transverse Myelitis is a rare disorder that strikes approximately one out of 1.3 million people. I am one of these people. This is my story.

I was born into the Wroblewski family in 1952 in Buffalo, New York. As the second daughter, and one of five children, I strove to be 'different' and unique among the voices of my noisy company. With a flare for the dramatic and musical talent, I enjoyed being the center of attention as often as I could grab it. I was gifted physically, and there wasn't much I couldn't do in this area. My friend Linda and I were the only girls in sixth grade who could climb the rope to the ceiling of the gymnasium : ) I felt proud and confident because whatever I wanted my body to do, it could do. Then one morning, without warning, I was paralyzed from my waist down. This is how it happened. I was in high school and first period was the dreaded swim class. That morning I felt an unusual weariness and even stopped in the hall to lean against the lockers on my way to homeroom. Most of the time, people had a hard time keeping up with my long stride. I remember this detail only because it had bothered me enough that I wrote a note to my best pal, Jeanne, and I still have it in a shoebox somewhere. In the middle of pool time, I asked the teacher if I could sit out and she OK'd it. Then while trying to get dressed, I found I suddenly could not pick up my foot to put it in my shoe. My back hurt a lot and I started to cry. All I wanted was my Mother! They tried to put me in a wheelchair, but decided a stretcher was needed so the teacher just held and rocked me back and forth while they charged off for it. Then we rolled through the on-going gym classes to the nurse's office where the woman tried to calm me saying, muscles play funny tricks on us sometimes. I guess they called my Mom, and she came with the family station wagon and they rolled me in there. My sister came too. It was a strange ride, lying down in the back of the car, hair wet from the pool and my Mom and sister oddly silent. I learned I had caused quite a flurry of rumors in my high school class of 400.

When we arrived at Mom's hospital (she was a RN and worked at Park Ave. Hospital as Mrs. W), the Dr. examined me and struck my knees with his rubber hammer and they just sat there. I was admitted and sent to room 222. Hours later, Mom came to work at 3 PM. and I still hadn't seen a Doctor. They were waiting for the neurologist and couldn't even give me an aspirin until he arrived. I had a raging headache because I hadn't eaten since early morning and I hadn't urinated all day. I could just wiggle my big toe on my left foot. That was it. Evening fell and the flamboyant Dr. Fred Geib arrived and after an examination that included pins, he decided I needed a spinal tap. Mom couldn't watch. She left the room. X-rays revealed nothing. Probable diagnosis? Gullian-Barre Syndrome. Prognosis? Unknown. They didn't have MRI's (magnetic resonance imaging) available at the time and when technology eventually made this possible, my lesion on the spinal column at T-10 was no longer visible. I heard them say the spinal fluid showed an elevated white cell count, but no one ever stopped in to discuss any test results with me. I was only 15. Just a kid. That night I was moved into the intensive care unit in case the paralysis traveled up and affected my breathing. I was catheterized and had an IV put in for fluids, I think. I heard my Dad had come by to see me but I was sleeping and he didn't want to wake me. ICU is a strange place to be at night. Weird sounds. Once, when I was obviously distressed, a nurse asked me, "What's the matter, honey? Are you afraid you're never going to walk again?" What? What did she mean? The possibility had never even entered my mind! Mom told me they just put me in there because I was 'her daughter'.

So began my stay of three months...entered the day before Thanksgiving 1967 and didn't leave til the end of February. I hated hospital food and would often cross out the day's menu and ask for a ham sandwich. If I close my eyes, I can still remember the smell of the place when those trays would come along. I can't eat ham now. The walls of my room were covered with cards from relatives and friends. When I was released from ICU, I got to share a room with an elderly lady who had skin ulcers. I guess I was the only 'youngster' on the floor and so when I could sit up (whoa....stop the spinning world!) in a wheel chair, they would let me roll around to deliver the mail to all the other rooms. Once, my girlfriends came near Christmas and we sang carols around the wing just for the sheer joy of hearing our voices blend together once again. We had spent many an overnight singing Beatles songs till 4 AM and missed that shared experience. Then they left, and it was quiet again. Incredibly, I did not receive any treatment or medications while in the hospital. No physical therapy, no steroids, no vitamins. Too late, the damage was already done. There was no surgery to 'fix it'. I did come down with the flu TWICE during my stay.

Christmas was the hardest time. Mom bought me a purple velvet skirt and it fell off of me. Clothes felt uncomfortable and awkward. My brothers and sisters didn't know what to say or do there. I didn't either. I missed my little brother, who was very close to me. I think he couldn't come in because of his age. Later I learned he had broken down one night and cried for me to come home. Home. When I was finally scheduled to come home there were still no preparations made for 're-entry' into the world out there.

The ride in the car put butterflies in my stomach. It was snowy and I asked Dad to please slow down, I felt dizzy. When I got inside the house, I crawled around to refresh my memory of the place. I could only stand up if someone held on to me, and Dad was my main 'dancin partner.' Frighteningly, I nearly blacked out trying to pee on my own. (It's amazing to me now that no one ever addressed this issue or any other embarrassing, yet critical, concerns I had.) We borrowed a bedpan from one of our neighbors. There was no offer of counseling or any support groups. There was no support. We just made do.

I had tutors at home to help me catch up with school. I'm not sure when exactly I returned to school, but I was on crutches by then and yet I used the wheelchair to get around my expansive high school. Somewhere in the middle of all this, I had a physical therapist come to the house to assign me exercises. I hated these. I still don't like to do anything I can't do well. Someone had to help me or I just flopped around. I wasn't convinced they would do any good. I couldn't see any improvement. Discipline was not my strong point. I do remember the day I took more than three steps on my own. One, two, three and I'd usually lose my balance and tumble. This time I caught myself before the tumble and without holding on to anything, I walked clear across the kitchen, where Mom was holding her breath with her back to me. "Ta-dah!" Every time we would visit the neurologist, Mom would say, We want to know when is she going to run? He would smile indulgently and say, be glad she can walk. Running was not in my future.

So, little by little, improvements came. I was walking without aids, but it wasn't pretty. And so far as I knew, I was alone in the universe with this affliction. A little more stamina, a little more balance, a little more courage. Lots of falls. I was exhausted so easily. My body wasn't my own. I couldn't make it do what I wanted. It was out of my control. Like a child again, but no one expects a child to have these abilities. It's OK for a child. I wanted to tell everyone I met, " This is not the real me! This is not how I'm supposed to be!" I felt ashamed somehow. I was no longer graceful. People stared. Children pointed. I wet myself. Worse. I began to hide.

Years passed and I saw the Dr. less and less. There was nothing he could do. It was an isolated and lonely season. Still, I tried out for the school musical and got the lead role in Carnival. I was Lily and I had to set my crutches aside. I fell in love. There was a lot he never knew. I was good at pretending. I developed a habit of committing to social events with an initial enthusiasm and then canceling out at the last minute when fears or reality would stop me. My friends took me to a Young Life meeting and I met a real live Jesus I never knew growing up as a Catholic girl. And I loved to hear the stories of Jesus healing the blind, and the broken and the lame. I read the Old and New Testaments with a hunger for answers. I had a lot of questions for God. So I began my search for meaning in things unseen. Some of my sorrow lifted.

I graduated and went off to college at the University of Buffalo and then to grad school in Library Science. Walking across campus was difficult in Buffalo winters and I usually walked alone as it took me twice as long to get anywhere. I developed all sorts of coping mechanisms, some healthy, some not. I lost my Mom, my surest advocate. Then I began my career in the world of children's library service. Surely, I discovered, I was born to be a storyteller :) in a long line of storytellers. And, finally, I began, on my own, to search for answers and possible help. This brought me to a neurologist who had other cases similar to mine. He corrected my diagnosis to Transverse Myelitis. He could tell me what had probably happened to me. No one else ever had. He got me into a study that allowed me to have a MRI. The pictures this produced showed only a textbook perfect image of brain and spinal cord. It had been too long. He explained that TM was a de-myelinating disease where quite probably a virus triggers a dramatic response from the body's immunolgical system. The body then actually fights against and mistakenly damages itself in an area of the spinal cord. The light of knowledge was beginning to shine. I had had a severe flu-like illness shortly before my episode and the Dr. thought it might have been mononucleosis, although the test had been negative. The myelin sheath surrounding the spinal cord enables the body to receive and send messages along the nerves from the brain and back to the muscles. Once damaged, scaring results leaving a lesion that is sometimes visible with a MRI. All body functions are affected from that point on the spinal cord on down. Nowadays, people are treated immediately with steroids to reduce inflammation. Sometimes during our visits my neurologist would tell me about another person he admitted with a diagnosis of TM. I was hungry for details but little could be shared. He also helped by sending me to a Dr. who eventually taught me to manage my bladder through self-catheterization. That was one liberating step for me. He also encouraged me to try physical therapy once again, and that resulted in the use of an orthotic brace and a cane that has made a world of difference in my gait and endurance. Why this idea had never occurred to us before is a wonder to me. I had just gone from crutches to nothing and I suppose they thought if I wasn't complaining, everything was OK. Well, it was OK, but it wasn't good. And now it was getting better.

My story takes a dramatic turn when I purchase a computer and acquire Internet access. One day, it dawned on me that I could do a search on this critical issue in my life, Transverse Myelitis. I typed it in. I waited. The hair on my head literally stood on end when the screen filled with a message that would change my life. There were others. And they wanted to talk with me! As I read their individual stories, the tears would stream down my face. "Dad, Dad" I would call. "You've got to read this! It sounds just like me!" They understood my fears about the future. They hungered for the facts of just what had happened to them and were willing to work to get the answers. We could all get our voices together and be heard! There were hundreds of us. Some were in wheelchairs, some even on respirators. I began to realize how blessed I really was. They had married, and even had children. They had endured the darkness of the unknown as I had. The mother of one child diagnosed with TM started The Transverse Myelitis Association. Her name is Deanne, she lives in Seattle and she is my friend. When the opportunity came to meet her and a few people from this group in Columbus Ohio, I knew I had to go. There was no question. Whatever the cost, I knew I had been waiting all my life for this answer to prayer. I flew to Ohio and got myself to the convention center. I was lost. This place was huge and I carried a heavy backpack. At long last I walked into the room where a circle of people were introducing themselves. I sat down next to a lady in a wheelchair and everyone looked at me. Hello, I said, my name is Maureen and I've come from Rochester, New York. I was paralyzed from the waist down at the age of 15 by Transverse Myelitis and I have never met another person on this planet with TM. Sandy Siegel walked across the circle and put his arms around me and I fought not to cry in front of everyone.