Journal Volume 3 - June 2008
Article 31
Cindy Ranii How does one start to tell a life-changing story? In the case of the story of my onset of Transverse Myelitis, I don’t even know when the story begins. Was it with our fairytale trip to Scotland in July of 2005? Was it with the coughing and sneezing children in the plane to Ireland? Was it the first sign of a backache a few days after we returned? Was it the loss of feeling in my left foot and my falling into a glass coffee table? More than likely the beginning of the story is something I will never know, when some unknown virus entered my body and started the mysterious chain reaction that led to my being a paraplegic (T-3, complete, ASIA - A). Late in July of 2005 my partner, Shelly, and I and other members of our family had just returned from Scotland where we had participated in our daughter’s destination wedding. A castle in Scotland, men in kilts, and a stunning bride made for a never-to-be-forgotten event. Also, we had played golf five or six times, including at the home of golf, St. Andrew’s. Returning back to California we spent a couple days at a resort near San Diego, California. I played golf once there before our drive back up the coast to Santa Cruz. All seemed well when we returned home, and we were happy to play with grandchildren, and I remember lifting them over my shoulders and running down the hallway of our house. When I awoke with a backache in the middle of the night, I attributed it to lugging golf clubs halfway around the world, being cramped in cars and planes, and carrying grandchildren around on the unforgiving hardwood over cement floors. My 58 year old body would bounce back, I was sure, but I knew it might take a day or two. I got out of bed that Monday morning, did some yoga poses, which I did every morning, and willed myself to get back to work. I trusted that being active would do the trick for my post-travel back stiffness. My work as superintendent of a high school district was busy and demanding, and I was returning to it after the first full three weeks off in many years. Throughout the day, however, the pain did not go away. That night I was unable to sleep. I tried sleeping on the floor, which gave me some relief. I went to work again on Tuesday. Again, at night the pain was intense, and I stayed home from work on Wednesday, and arranged to see my doctor on Thursday. Leaving the house on Thursday for my doctor’s appointment, I reached for my briefcase by the front door and fell backwards onto the floor bumping my head on a coffee table. Never before had I ever fallen. My left foot had just buckled under me like it was asleep. I drove the 30 minutes to work and worked for an hour or so to catch up on some issues before driving to the doctor’s office. The doctor had been called away to deliver a baby, and I was told I could reschedule. I said that I would wait however long the wait might be. I somehow knew that something was going on, but I had no idea what it was. I saw the doctor an hour or so later. She was seriously concerned but unable to diagnose what the source of the back ache and loose left foot was. She prescribed pain medication (Vicodin) and an anti-inflammatory (steroid) and said, “I don’t think you have had a stroke.” A stroke? I had never even considered that what was going on could be really serious. I had assumed a pinched nerve or a “tweaked” back and that a trip to the chiropractor or the doctor would put me back in shape. The doctor said not to go to a chiropractor until we had determined what was going on. She also said that if the pain worsened or if I lost control of bowel or bladder to get to the emergency room right away. That sounded ominous. I still assumed, however, that the post-travel back ache and foot looseness was temporary. I went to the pharmacy to fill the prescriptions, and while waiting in line, I realized that I was not able to stand without wobbling. I asked someone to hold my place in line, and I went to the cane aisle and picked out a cane. I sat on a bench near the pharmacy counter until it was my turn, and with the help of the cane, which I purchased, I made it back out to the car and home. Immediately I took the medications and lay down on the couch hoping for some relief to the now excruciating back pain. Unfortunately, within two hours, the pain had worsened, and I was unable to control my bladder. I called our health insurance hotline and the nurse confirmed that I should get to the emergency room stat. Shelly drove me to the emergency room, and using the cane, I was able to walk. My left foot was slightly drooped and dragging and my back hurt like crazy. I checked in with the triage nurse and then found a comfortable place in the waiting room, along with some 10-20 other people. I knew from experience that it would be a long wait, and I was readying myself physically and psychologically for an extended stretch of sitting. My first sense of “oh, no” was when the triage nurse called my name ahead of everyone else’s. Doctors of various specialties came in right away and performed multiple tests. Within several hours I had seen a neurologist, orthopedic surgeon and a cardiologist. The orthopedist and the cardiologist each announced to us that I was fine, as far as their specialties went. With smiles, each of them left for the evening … not their case on a late evening in the E.R. The neurologist was puzzled, although he assumed that I had probably had a stroke. I was admitted to the hospital for further observation and testing and to make me comfortable. After an MRI and other tests, the neurologist concluded that I had had a stroke in my spine, a spinal infarction. He made calls to a local rehab center and suggested that it would be best to go there for a week or two and that I should regain the movement of my left foot within 4-6 weeks. It would take some work, but I should be fine. I met with the president of my school district’s Board of Trustees and we named an acting superintendent, because it looked like I would be out of commission for several weeks. I was using a walker in the hospital. Some friends and family visited and we even had an impromptu birthday party on the patio for a dear friend. On the way back to my room, using the walker, I walked with my three-year-old grandson. We arrived at my room and I started to turn in. He said, “Let’s go down to the end of the hall and back.” I was totally out of energy but the grandma in me agreed. As we got to the door of the room, he looked up and said, “We’ll get you back, Grammy.” That was on a Friday, and it was the last time I ever walked. Over the weekend the lack of feeling in my left foot moved upwards and soon I could no longer move my left foot or leg. Also, my right leg lost its sensory function. I had been doing range of motion exercises the best I could. I awoke in the middle of the night on Sunday night and I thought that since I was awake anyway I might as well do the range of motion exercises. My feet and legs, however, did not answer the call. I could not feel or move either leg, and my midriff also had no feeling. I lay there alone and whispered to myself, “Oh, ----. I’m screwed.” I saw the neurologist the next morning and he seemed truly perplexed. He said that he would transfer me to a larger regional hospital, Stanford University. He didn’t know what I had or what to do about it. At this point my body went into “spinal shock” and two weeks of intense pain ensued. It was after three weeks of hospitalization that the terms Transverse Myelitis were first used to describe my condition, although the neurologist noted that my presenting signs were neither transverse nor myelitis. Some say that there is no worse fate than being a medical anomaly in a teaching hospital. The doctors concluded that my case was probably prompted by an unknown virus, thus my case was idiopathic. Dozens of doctors were interested in my case, but the focus was on describing my case, not on treating it. All treatment focused on controlling the pain and protecting my bodily systems. After the pain had been put under control, I was told that I would be transferred to Valley Medical Center to its spinal cord injury rehabilitation center. It was then that it became clear to me that there was no treatment for my condition. The focus would now be on my learning how to live with it. That was reconfirmed when I settled into my room at the rehab center. A nursing assistant was taking some vital signs and asked, “How long have you been a paraplegic?” I actually started to turn around to see who she was talking to. It was a long, sobering moment when I realized that she was, of course, talking to me. Many chapters of my life have been lived since my “onset” story of two and a half years ago. I’m now 60 years old with more grandchildren and more time to enjoy them. Although I returned to work after six months, I am now retired. I work out at a rehab gym twice a week, play wheelchair tennis, some golf, and enjoy the increased space in my life. Shelly and I have put 26,000 miles on a Toyota Sienna ramp van which is fitted with hand controls for me, and we have made the necessary modifications in our home to make it accessible and comfortable. We are a four wheelchair family: manual chair for most days, power chair for long outings or when my elbows and wrists act up, a commode chair for toileting and showering, and my favorite, the tennis sports chair. Our life has changed dramatically, but with Shelly’s positive spirit and the love and help of wonderful family, friends, and neighbors, we have been able to move on and embrace life. It’s more difficult, of course, but I have also found that I am more patient, kinder to others, and more appreciative of all that life offers. If I can be of any help to any TMers or their loved ones, please do not hesitate to get in touch with me. Life does come at us sometimes. I can be reached at ssjchr@sbcglobal.com; 1036 Laurent Street, Santa Cruz, CA, 95060 or by phone at All my best to you and yours on your journey. Cindy Ranii |