I wrote an autobiography in the year 2000 as part of a home study in anticipation of adopting a child from China. I am a middle-aged man who wants to be a parent.
When I began the autobiography I felt reasonably healthy, able, and willing to settle down, raise a family and to do some good for the children of the world. I wrote down rudimentary memories of my childhood, adolescence, young adulthood, and my career transitions. I listed long-term goals, future plans, philosophies, visions and my transferable skills related to parenting.
All the medical exams, documents and financial resources needed for the adoption process were in place. The adoption papers were sent China and the waiting period began. The waiting period has its challenges but nothing prepared me for the not so subtle changes in my life that I was about to encounter.
It all started when I fell down the stairs. I got bruised and felt sore like a clumsy lad. Soon, I began walking like a drunk and slurring my speech without the benefit of alcohol. Then I experienced trouble during meetings while looking at text on various documents. I did not see the print well enough to read it. I felt a bit mad.
Every morning my routine included walking the dog before going to work. I began to experience increasing difficulty going around the block. My right foot dragged and I continually tripped. My pace was like that of an old man. During one walk, I fell in the middle of the street. This is the turning point in my life.
My loving wife gasped with exasperation and begged me to see a doctor. After all, she said, it “is as though you are suffering from MS (Multiple Sclerosis)”. I laughed at the notion. Way down inside, however, I seriously wondered about what she said. This comment became the proverbial “wake-up call”.
Later that day I asked the employee health nurse if I might possibly have MS. I shook when she said, “Charlie, I don’t know, perhaps you should see a neurologist.” I had recently changed health plans. I went to see my new doctor for the first time.
After a quick physical and reflex exam I received a referral to see a neurologist.
The neurologist’s office is a different kind of place. The brochures and magazines in the waiting room are about Alzheimer’s disease, Parkinson’s disease, strokes and Multiple Sclerosis. I nervously chuckled to myself, thinking about this.
The neurologist interviewed me, asking questions about my medical history and lifestyle. I asked her about my MS like symptoms. She asked me walk on my heels and my toes, walk a straight line, and follow her thumbs as she moved them through the air. She closely examined my face and said that indeed it appeared to be palsied.
I had to touch my nose with my index finger. Then she noticed that my right leg was “out of alignment. Something is definitely wrong.” I remained naively confident. I barely prepared myself for what she said next:
“You need Magnetic Resonating Imaging (MRI) test to rule out Multiple Sclerosis.”
I felt stunned and in disbelief. All of my foot dragging, stumbling, slurred speech and blurred vision might be MS! How is one to proceed with plans to adopt a little girl from China? What happens in regards to my career? Why me? I did not believe it. I maintained my composure. I acted nonchalant. I continued to harbor doubts.
My personality allowed me to maintain a level of optimism. I sat in the office listening to the doctor. I followed her instructions for reading about MS on the web. My life suddenly appeared to be heading in the direction of uncertainty.
She made an appointment for my MRI the next morning.
I spent the night reading MS articles. I joined the MS society. I awoke early, drove myself to the hospital and presented my insurance card to the receptionist. I signed some papers and after stumbling down some long corridors and bumping into a few walls, arrived at the MRI building.
I walked into this strange room, protected with a massive locked gate. The technician asked me how long had I been suffering from MS. I told him I did not know for sure if I had MS. I was there to “rule MS out”. He took a deep breath, and prepared me for the MRI. I had to remove all of my clothing except my shorts. I assured him that I was not afraid of small tight places.
The MRI machine is a long cylinder that makes a racket as it maps your brain. You must remove all of your belongings, lie down on a narrow table and prepare yourself for a journey into the tube. It takes about thirty minutes to complete the test. The preliminary readings can be read within minutes. I viewed the images of my brain on the monitor screen. I was not looking at a healthy brain. The images looked similar to those I had viewed at various MS websites on my computer.
Later that day, I called the doctor’s office. She asked if I was sitting down. She informed me that the preliminary MRI reading revealed the diagnoses I had thought. I asked: you mean it is Multiple Sclerosis? “Yes” was her reply. I was speaking to her from my office that overlooks the Hudson River.
It was a beautiful day. I felt as though I wanted to sail up the river for good. She wanted to see me in her office, with my wife, as soon as possible.
I called my wife, my parents and sisters to tell them the news. My parents cried. My sisters questioned the diagnosis. I told people at work, friends and others. I told everybody who would listen. I talked because I could not imagine that I had MS. I needed support. I needed guidance. I needed friends. I needed time to adjust.
Three weeks later, I had a spinal tap. The spinal tap definitively confirmed my diagnosis.
Looking back, I realized that people had been asking me for a year if I was limping. They asked me “how did you hurt your leg?” I had some mild symptoms that I always found other excuses for. I believed I had the early stages of arthritis, symptoms related to ulcerative colitis, or something else. The bottom of my left foot would get this lump. It would disappear for months at a time. I had nary a clue that it might be an early sign of multiple sclerosis.
Last May I took on a new job as a therapeutic recreation director in a long term care facility. I passed my pre-employment physical.
Therapeutic recreation is a helping profession. It adapts leisure activities for people with physical, cognitive, and social/emotional deficits. It helps people overcome barriers to a leisure lifestyle.
I work in a facility for older people with disabilities. I design therapeutic gardens and recreation therapy programs. I am a professional recreation therapist with the prospect of becoming a resident in the place I work.
I thought back to my studies in recreation therapy with a whole new perspective.
Stretching, mild exercise, range of motion activities, social activities and achieving successful outcomes are the basic tenets for working with MS patients. According to the Recreation literature we have symptoms including muscle spasms, loss of sensations, and difficulty with bladder control.
We are noted for presenting physical and emotional changes.
There are drug therapies that slow down the disease process. I was tentatively diagnosed in late September of 2001. I took some prednisone, had a spinal tap and prepared myself for major lifestyle changes. I was losing my ability to ambulate. I was becoming overly tired and fatigued. I read a dozen books about the disease and joined in some research surveys.
The disease presents many unknowns. It is divided into three basic categories or stages. Determining which category your disease is requires at least five years of clinical observation. The statistics show that a specific definitive diagnosis cannot be made until that time.
Each individual has his or her own idiosyncratic symptoms. Statistics apply to MS patients as a whole but, to each individual, statistics offer little in determining the course of the battle. The ability to live with a chronic disease is reflective of one’s ability to cope.
Although MS is not a fatal, it is a life sentence. I used to want to retire early, now I hope to work as long as anyone else. I do not want to be limited by disabilities.