Diagnosis: Transverse Myelitis

Arizona, United States

Prior to my life with TM, my husband Michael and I led a very active and hectic lifestyle. We enjoyed traveling for our flooring business and because our children had great careers in the travel industry, it allowed us the luxury of flying and cruising worldwide. In my spare time, I was a professional student, constantly fulfilling my thirst for learning, such as accounting, solar and wind architecture, photography, real estate – anything I could think of to keep my brain on overload. We had designed a passive solar home that we planned to build on our acreage at the top of a mountain in the northeast corner of California.

We loved to stay active, and our adventures were not always the safest. I loved to find trouble – one time we went with friends UP the whitewater rapids in the Grand Canyon! Since that adventure, the authorities have made it illegal to ride hard-sided watercraft in the rapids.

We loved riding our motorcycles in the backwoods of Northern California. We had even bought motorcycles for our sons, and the four of us would find old ghost towns, abandoned buildings hidden away, crazy experiences with wild animals and other memorable adventures. Life was good.

In December 1996, during one of our many cross-country travels, I suddenly lost the ability to stand/walk while waiting for a flight at the airport in Minneapolis. It was even more scary than the time I pretended to step off the edge of the Grand Canyon as a joke to frighten Michael. My goal was to get to our first destination – Michael’s goal was to get me to the nearest ER. Healthy people don’t just collapse and lose use of their legs! I wanted somebody to put a band aid on the problem, give me some pain pills, so I could get back to the airport and continue our vacation. Since I had been involved in a rollover auto accident two weeks prior (I did a complete somersault in the middle of the desert, with Michael following me right behind; scarier for him than it was for me), ER docs immediately began testing for injuries, but determined that I had no physical injuries, rather that there was something neurological going on. So, I was sent by ambulance to the University Trauma Center. While the doctors were administering tests to determine what was going on with me, the chief neurologist ordered high dose IV steroids to begin immediately for the next 5 days to reduce possible swelling in my spinal cord. The first day after my IV drip, I was able to just wiggle my right big toe, with nine doctors standing around my bed, observing and applauding. I was told I had something called Transverse Myelitis. Actually, I was not told this – our three daughters, two of whom are nurses, had flown in from Detroit and while watching me during physical therapy, asked the therapist what was wrong with me. The PT read the diagnosis from my chart.

The lack of bowel/bladder function was not discovered until days later, when the question of “when did you last pee” was finally asked. I was catheterized and filled up a large pitcher!

Insurance issues forced the hospital to discharge me early to return to California for physical therapy and further care by “my” neurologist. When asked for the name of my neurologist in California, I had no name to give him. I called a friend in California and got the name of a neurosurgeon. The neurosurgeon promised to see me within 24 hours of landing at the airport. Of course, it took two weeks, another spinal tap and more tests for him to say “I am not a neurologist, I am a neurosurgeon, so I am going to send you to a neurologist”. By the time I saw a neurologist two weeks later, he said my insurance would never approve PT for me, since I was now able to walk 10 feet with the aid of a walker. Of course, these doctors are very knowledgeable, so who am I to question their competence? Physical therapy was then self-administered, using my very heavy Jeep clutch and rubber bands for resistance. When attempting to sign up for disability, my all-knowing neurologist advised me that I would never qualify, because if I could sit at a desk for more than 2 hours, then I am still able to work. Of course, he did not take into consideration that I traveled quite a bit, climbed ladders, wore a hard hat on construction sites, and did not sit in an office. And of course, he did write on the report requested by Disability that I was able to walk and had a “complete” recovery. I was told by the doctors in the hospital that this was just a little ‘hiccup’ and in 3 months I will never know I had lost the use of my legs.

In my quest for more information about this rare disorder, I typed the words “transverse myelitis” into my new computer and ultimately met Jim Lubin and the transverse myelitis internet club. I then flew to Seattle to meet Deanne Gilmur, and eventually that year I met Sandy and Pauline, which then led to my appointment as Secretary of The Siegel Rare Neuroimmune Association in 1997.

Looking back on my experiences, I believe that because I was in the right hospital at the right time, I was given treatment immediately and this is why I believe I have had good improvement.

I also believe that my persistent, confident and self-assured attitude had a lot to do with how well I recovered and why I very rarely give up on myself. I have had many, many occasions in the past 20 years where I probably lost months of my life due to deep depression, and spent weeks in bed. I have kept myself surrounded by people that cared about me when I didn’t care about myself and that has really helped. All of my life, I have been told by some people that I couldn’t possibly do something or accomplish something, and I would go about accomplishing that task just to prove that I could do it!

I now seem to be getting weaker and not able to walk as much as I could maybe 10 years ago, and my pain levels are increasing, but I am still not giving up. I am still hoping that I will improve one day. I just need to keep myself surrounded with the love that I have received from my family, mostly my family that I have grown to love and that keeps growing within The Siegel Rare Neuroimmune Association.

Debbie Capen