Self-healing, recovery and multiple sclerosis
Although I have endured episodes of all kinds of damage that MS can cause I have always managed to recover and lead a normal, active life. Multiple sclerosis is a disease with an unknown cause and unpredictable course. Random damage to the myelin coating of nerve cells in the brain and spinal cord results in symptoms that seriously affect our lives. While it is a disease that presents many challenges, the stress, anxiety and disability after the diagnosis of multiple sclerosis could be better managed if more people were aware of research found in a little-known science journal.
My husband was a student at Veterinary College, and our financial restraints meant that I couldn't agree to two weeks in hospital for steroid treatment. My little girls, then one and two years old, were excited to have me home from work and didn't notice anything wrong. Feeling like a stranded hippo, I made myself go through the motions. We crawled around and played with blocks and stuffed animals. Covering one of my jerking eyes, I read their favorite stories. I couldn't say no!
Soon I regained my mobility and went back to work in the pharmacology research laboratory. My husband and doctors continued to tell me that I had to accept what was coming.
Every lunch hour, I went to the medical library to see what pure research had to offer. After all, this was 1967! The very first paper I found (Feigin & Popoff, 1966) confirmed that repair of damage to myelin does occur, even in those notorious plaques of damage. A reference (Bunge eal,1961) revealed that repair of myelin begins 19 days after damage, and by 64 days, all damaged nerve cells are at least thinly repaired. This work, which involved the study of laboratory cats, also revealed that inflammation preceded the first sign of healing, and ended when repair of all damaged cells was established. It was observed that the condition of the experimental animals began to improve when remyelination began, and returned to normal by the time most of the nerves were at least partly remyelinated.
The only thing that these adult cats had going for them was the instinct to recover mobility. In an embryology text (Patten, 1958)I read that movement speeds the growth of myelin. Veterinary medicine helped me understand how animal research can be applied to humans.
My self-healing and recovery, directed by chance only a few weeks before, now had a scientific explanation. Intuitively I had followed the example of my toddlers who crawled to gain back and pelvic strength, and right-left coordination. Each day, my girls pushed a little beyond their limits and then napped - slowly I learned to pace myself, too. My girls and I, and the kitty cats, just wanted to get going.
After graduation, the prospect of supporting "what was to come" was too much for my husband, and I became a single parent in 1970. Custody of the girls wasn't an issue; he thought that they could cheer my last able days. Then and there I decided that I would survive and look after my girls, no matter what happened. Although I have endured episodes of all the kinds of damage that MS can cause, I have always managed to recover and lead a normal, active life.
People tell me that I am one of the lucky ones with the 'benign kind' of MS. Benign is defined as "favorable for recovery" in Dorland's Medical Dictionary, but I don't think that recovery from several bouts of serious damage qualifies as luck.
I continued to update myself about MS and found evidence (Rasminsky & Sears, 1972) that three percent of usual myelin thickness is sufficient for normal conduction of nerve impulses.
This helped to explain why recovery could begin without a complete repair of the damage. The suggestion that MS may run a course and arrest itself (Draper, 1974) encouraged me to plan a future.
Accepted as a student at McMaster University, in Hamilton, Ontario, I chose to study physics and electrical engineering to equip myself for a deeper exploration of the disease process.
Successful completion of a degree in 1979, followed by a Master's in 1981, hasn't completely countered predictions of brain damage. However, research assures me (Ghatak, 1974, Phadke, 1990) that there is no correlation between damage caused by MS and one's clinical condition. Yoga, which I began in 1970, has been very helpful because it can be done in bed, on the floor, in any condition, and in any position. Yoga works gently to unite the body, mind, and spirit in a balanced state of health.
I relearned the most important lesson about physical effort: Go to your personal limit - and three seconds more, then rest and recuperate your energy. Our bodies signal with innate wisdom, if we learn to listen. Only we know our limit.
The idea of a formal exercise program never appealed to me, so I chose to incorporate Yoga and my movement regime into my daily living. For me, playing 'Ring Around the Rosie', and 'Head and Shoulders, Knees and Toes', was too much fun to be considered exercise. Since I 'train' to live a normal life, even housework bestows an extra reward. It was important to have a symbol for recovery, and seeing myself dancing in my black patent shoes always helped me reach my goal.
Physical effort made for recovery has never caused me pain or injury. Afterwards I do deep breathing, and not only does it relax me physically, but it also brings peace, mentally and emotionally. The silence of meditation restores my spirit.
Good nutrition is an important part of self-healing and recovery. I don't have a fancy diet, just a sensible, balanced intake of nature's best gifts to supply fuel for the tasks at hand. These are all vital moves which can strengthen the immune system.
The title of my book, Black Patent Shoes Dancing With MS, is a metaphor for the steps I have taken in the course of self-healing and recovery. As in dancing, daily practice perfected the rhythm, timing, and strength of each step. As in dancing, I moved forwards, backwards, and in circles. The choreography of my dance allows me to live without physical restrictions.
Publication has been the culmination of efforts to share the positive information that I have read in research, and applied to constructive management of this diagnosis. In workshops I describe my steps in self-healing and recovery. Simple explanations of the research I have used explain the benefits of basic moves and how they can be used to reclaim mobility.
Since my diagnosis in 1967, the most difficult aspect of my life has been the non-stop insistence that recovery is impossible. Patients are the experts on their own lives, but may need support to recognize the resources available to accomplish recovery. Most of all, we need information that we can apply to self-healing. Constructive management of multiple sclerosis need not interfere with searching for the cause and cure.
What I have accomplished is not a cure, but knowing that I can use research to recover again if need be, relieves me of the fear of tomorrow.
I spent St. Patrick's Day 2000 in the Alberta Badlands with my granddaughter, digging dinosaur bones. This year I will celebrate the twenty-first anniversary of my marriage to a man who also has no fear of the future.