Knocking on Death’s Door
By: WDC, M.D. --- Orlando, Florida
The tip of my left index finger was becoming more and more numb. Then the same thing started happening to my right index finger. A spot on my left ankle was next. In retrospect, I recall that I sometimes stumbled when I walked and that my daughter had pointed out that I was dropping the softball a lot when we played catch. To this point, I had simply written it all off as a product of turning 54 years old. But, when I fell over one night while trying to pick my sleeping infant son up off the floor, I knew that there was a problem that could no longer be ignored.
I am an M.D., but my specialty is pediatrics, not adult medicine. I knew who to refer my patients to, but I didn’t know who to refer myself to. I called my children’s Ear, Nose, and Throat doctor thinking that I might have a middle ear problem since that is an area of the body that has a lot to do with balance control, but he said that the problem sounded more like a neurological problem than a middle ear problem. He arranged for me to see a neurologist that specialized in the treatment of multiple sclerosis. Feelings of pending doom began to creep intomy thought processes.
During my initial visit with the neurologist, my fears quickly went from bad to worse. Multiple sclerosis would have been a “cake walk” when compared to what he thought I had – a condition calledolivo-ponto-cerebellar-atrophy, also known as multi-system atrophy. This degenerative neurological condition progresses slowly (over a period of years) and robs its victims of tactile sensation, coordination, energy, and memory ultimately resulting in death. This is not exactly what a previously healthy and vigorous doctor and father of six who once ran the New York Marathon wanted to hear. It was recommended that I see another specialist to confirm the diagnosis. One month later, my wife and I were in Miami, Florida where we were told by my newest specialist that the previous diagnosis was indeed a possibility,but he recommended that I receive a further battery of tests to include acomplete vitamin assay just to be sure. These recommendations were relayed to my local neurologist by my specialist but were ignored.
Within several months of my (mis)diagnosis, I had become apathetic looking shell of the person I had not so long ago been. I began to wear a patch over my one eye thathad begun to go blind. My weight had dropped from 183 pounds to 118 pounds. My memory was fading rapidly and I spent my days laying in my recliner(my “sleeping chair” as my son aptly referred to it). I left my medical practice in June of 2005 to go home and die, but I insisted that my family, including myself, still go on our vacation to Cabo San Lucas, Mexico that we had planned the previous summer. At the airport in Mexico, I was carried out of the plane in a chair by attendants who walked me down the stairway ramp that had been wheeled out onto the runway. I remember little else of the vacation other than laying in bed. I learned later that everyone thought I would return to Florida in a box.
Upon my return home, my sister called one of my friends and asked if he would help; she was at the end of her rope. I had resigned myself to my fate and I was unwilling to seek further help. I just wanted to die and be done with it. Apparently, I was not nearly as good a patient as I was a doctor. It was only then that I began to understand the true meaning of the word “friend”. I owe my life to my friend, Harvey, a child psychologist I had worked with for over 20years. He took time out from his busy schedule to take control of my life. Harvey is the founder and director of Infant Swimming Resource, a program that teaches infants and small children how to survive in the water. He dedicated the next 50 days of his life to saving a friend from a medical condition that somehow he knew I didn’t have. He arranged for my admission to Shand’s Teaching Hospital in Gainesville, Florida. When Harvey came to my house to take me to Shand’s, I did not want to leave my family and my home because I knew I would never see them again. When he picked me up to carry me to his car, I yelled, “Why don’t you just let me die?” He wouldn’t and because of his actions, I didn’t.
Harvey seldom left my side for the first 30 days that I was at Shand’s. I remember him leaning over me and whispering in my ear, “You don’t have olivo-ponto-cerebellar atrophy; you are not going to die.” It turned out that he was right. I didn’t have olivo-ponto-cerebellar atrophy. I had a severe deficiency of Vitamin B-12 caused by a lack of the substance ‘intrinsicfactor’ needed to assimilate B-12. This led to pernicious anemia and that is what took me to death’s door. The treatment was simple - regular intramuscularshots of B-12.
When I had recovered to the point that I could begin physical therapy, Harvey asked my doctors if he could do the therapy at his house in Orlando so I could go home. They said yes, and I spent the next two weeks at Harvey and JoAnn’s (Harvey’s wife) house learning how to stand again and do other things that we all take for granted. JoAnn even put up with me cursing out her husband in their home and throwing a twinkie in his face because he was so “mean” to me. You would think your best friend would cut you some slack when it came to therapy, but no way. After two weeks at Camp Harvey, I graduated and went home to continue my recovery.
Within one week of returning home, I was admitted to Florida Hospital Orlando to begin in-patient physical and occupational therapy because home therapy was not going well. Within one day of admission, I was diagnosed with Clostridium difficileenteritis. This bacterium causes an infection of the intestine that can potentially be life threatening. I was transferred to an isolation room. It was now September 2005, one year from the initial onset of symptoms. I was alive,bur I was in a wheelchair, had chronic diarrhea, had decreased sensation in my hands and feet, had no appetite, weighed 113 pounds, wasn’t working, and, for all practical purposes, had spent little, if any, time with my six children over the last six months. I was a mess.
During my tenure in isolation, I was started on hyperalimentation, a type of IV fluid that contains essential foods along with many more calories than regular IV fluids. I actually gained some weight. After one week, I was moved out of isolation and hyperalimentation was discontinued. Despite encouragement by everyone, along with doctors orders to “eat anything”, I still ate nothing.
One morning, I refused breakfast as usual, but when lunch came I was starving. I ate the entire meal and asked for seconds. I polished this off with two lime sherbets and potato chips. Potato chips became my staple. One day I ate twelve bags – and I don’t mean the vending machine size. My appetite has not been a problem since. Today I weigh 175 pounds.
I was discharged from the hospital in November but it was March before I returned to work in my power wheelchair. I am working full-time now and I only use the wheelchair occassionally; otherwise I use forearm crutches. I have a new appreciation for life and I will never again tell anyone, “I know how you feel,” because I don’t know how anyone else feels. I only know how I feel.
I love going to work and trying to help others get through life’s trials and tribulations. What gets me through each day is being with, and looking forward to being with, my children. I have become very intolerant of those who don’t seem to appreciate how hard handicapped life is. I often wish that others would “walk a mile in my shoes” for just one day because I know that this is the only way they will ever understand. Then, I gather my wits about me and understand that I could never wish this on anyone. I must be content to let them bask in their ignorance.
I never got a chance to thank the doctors at Shand’s Hospital, and I never learned how they came to suspect and discover my true diagnosis. I never got to thank the nurses and staff at both hospitals for tolerating me. I hope at least one of them reads this article and spreads the word. I have gotten the chance to thank Harvey and JoAnn for teaching me about friendship,and I have taken advantage of each and every opportunity I have had. I also thank my sister, my children, and my many other friends for giving me a reason to keep fighting and for being there when I needed them. This includes the ten employees of my medical practice who stuck by me throughout my entire ordeal and who remain with me to this day.
By now, some of you have probably noticed that there is Someone conspicuously missing from my list of those I need to thank. I am admittedly not the world’s most religious person and I am not yet where I would like to be or where I need to be when it comes to my relationship with the One I need most to be close to. I am, however, much closer to being the person that I need to be than I used to be. Most of you will eventually come to the same realizations and conclusions that I have, especially when you come face-to-face with theinevitable -- your tenure on this planet is shortly coming to a close.
I am a scientist. As such, I rely on the scientific method to explain events. I have always had trouble dealing with those aspects of life that cannot be explained by using testable data. Some things, however, are not testable, and logic cannot be used to explain them. When you are one breath away from the unknown and faced with theinevitable, even a scientist is not likely to ask Charles Darwin for hope and guidance. You will ask the One being that can help you. I know, because I have been there.