Back in 2004 when my father was diagnosed with progressive supranuclear palsy, I joined some online support groups related to PSP. I met an incredible woman named Aletta, who had been diagnosed in the mid-80s with multiple system atrophy (though she prefers the old term Shy Drager Syndrome).
Today, Aletta posted this wonderful article by Barry Bittman, MD on accepting the diagnosis (or getting a second opinion) but forgetting the prognosis.
Challenging the Odds: forget the prognosis
by Barry Bittman, MD
Emerge, March 1996
Have you ever met anyone who was given 3 months to live 10 or more years ago, who is still alive today?
Have you ever known a person, who despite an immediately fatal prognosis, managed to beat the odds and survive for a certain occasion such as a
Have you ever lost a grandparent who accurately predicted his/her death upon losing a soul mate?
Did you ever stop to consider if it is possible for a doctor to tell us how long we have to live?
If you’ve answered yes to any of these questions, read on. It’s a fact that many people are alive and thriving today who were told many years ago
that they had only a short time to live. It’s also common knowledge that some people live just long enough to witness the birth of a new grandchild or to attend a graduation or wedding. And it doesn’t seem to surprise anyone when the death of one grandparent follows shortly after the other.
Yet, few of us understand how any doctor can make the statement, “You have 3 months to live.” I’ll let you in on something …. they can’t!
Actually, all that a physician can tell you is how long the average person with your condition typically survives. The problem here is with the
words, “average” and “typically.” The doctor relies on statistical data based upon a bell-shaped curve that documents the range of survival for
people who are suffering from a given disease. At the peak of the curve is the most common survival time experienced by the group under study. It
comes as no surprise that everyone does not fit there, and often the range of possibilities is extensive. Some succumb earlier than expected, while others far exceed their prognosis.
Sometimes, however, I wonder if physicians really understand how their conveyed prognosis has the potential to become reality, not because of
statistics, but rather as a result of its impact on the patient’s belief system. In essence, the doctor’s words become a self-fulfilling
prophecy. Some people go home and get their things in order, while others go home and get their lives in order.
You’re probably asking yourself what is the difference. Frankly, the distinction is as wide as the Grand Canyon. The first group of patients
returns home, announces the bad news, proceeds through the predictable stages of Kubler-Ross, (anger, denial, etc.) revamps their wills, tidies up
their safe deposit boxes, lies down and dies on cue.
The second group, however, goes home and gets their lives in order. They maintain a fighting determination to complete unfinished business – to accomplish what they never have before. Remaining time is spent on what they have always hoped to do. A focus on surviving gives way to planting gardens, creating wildlife sanctuaries, teaching Sunday School, playing with grandchildren, volunteering time for others, and expressing their love. This group attends classes, reads enlightening books, becomes more spiritual, and sets out on a quest to discover meaning in their lives.
And then something extraordinary occurs – they flourish. Eating right, exercising, and taking care of one’s self comes naturally, and not as a way
to prolong survival. Rather, self-care simply evolves as a logical means for enabling their mission in life.
It’s easy to pick such individuals out of a crowd. These “survivors” make the world a beautiful place, help others, and fulfill their dreams. They’re the ones who are living mindfully appreciating every moment, and treasuring each experience with gusto and gratitude to our
Creator. They are our best teachers and guides.
So where does this leave us when faced with a less than desirable prognosis? My recommendations are simple. Accept your diagnosis, or, if in doubt, get another opinion. But never accept your prognosis!
Know that all things are possible, and listen to your inner voice. Realize that living beyond a serious illness may not be in the cards for all of us
no matter what we do. Yet always remember that it’s the way we live each day that makes the difference. Love life, realize your dreams, and tip the balance in your favor – Mind Over Matter!
Copyright 1998,1999 Barry Bittman, MD. All rights reserved.