Living With MDS: The Gift Of Time
Published: May 24, 2012 11:06 am
We all have time that we waste. One person’s wasted time is another person’s intensely felt pleasure.
No one can tell you what brings you pleasure; half of the time, we can’t figure it out ourselves.
Yet the simplest things do bring pleasure. There is, for example, the distinct pleasure that is brought on by not being in pain. I find a clue in this about pleasure; the clue is that it exists in part in contrast to other events. Sometimes pleasure exists most profoundly in anticipation. Try not to deny yourself pleasure, but do try to find it, because it is illusive.
Why did I start with pleasure when talking about the gift of time?
Everybody says that everyone should make the most of their time in this life. But what is “making the most of it?” Is it only work, family, belief in God that is making the most of life?
Life is a gift. No one needs to look far to find the person who suffers more in their life. It has been a great help to me over the years that I work with children who are much less fortunate than I am.
Every one lives life on the bell-shaped curve of “normal life expectancy.” Some people die in infancy, and some people live to be 109. Both of these examples are from what are called the tails of the “normal curve.” Almost everything that you can measure about people can be described by the bell-shaped curve, not just life expectancy. When you have a large enough population, the curve trends toward bell shaped on almost every measure.
All cancer patients want to be on the right tail of the bell curve. They would like to be one of the ones who survive the longest. Almost every one when asked says they would like to live a long life, in other words, have the biggest gift of time.
By nature, I am a skeptic. Even though I knew when I was diagnosed with myelodysplastic syndromes (MDS) that the data sample the statistics had been drawn from was quite small and that not much was known about MDS, I figured the information was basically correct: The five-year overall survival rate was 15 percent.
I was considered intermediate risk because of genetic mutations. However, no one knew anything about those mutations; they were completely uncommon and unknown.
So for years, I lived in the garden of life as if the Sword of Damocles was hanging over my head.
When I hit the five-year mark, that started to change. Not only was research showing that the prognosis numbers were changing, I also began to examine my underlying worry.
Teachers are fond of the saying “God, give me the serenity to accept the things I cannot change, the strength to change what I can, and the wisdom to know the difference.” When you teach, this is a mantra. Children are first and foremost themselves, and they are who we teach.
I began to realize that this disease was like an irascible student. There were few if any things about its course I could control so I better start enjoying the parts I could and working with those parts.
So I learned this lesson, one that by nature I was not inclined to learn willingly. I learned to flow around problems, to create solutions as I go, to allow myself to be frustrated, but never to deny myself the pleasure found in the small wonders of daily life.
In my next article, I will write about why a psychiatrist who gets to know you is one of the most useful doctors you can acquire.
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