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Cystic Fibrosis Music Show
The literature below is from the Music Show Pamplet
Too Much to Bear...
A little boy of 6 years died last night as the result of having
not one but two overwhelming diseases, Cystic Fibrosis and Acute
Leukemia. The last two weeks have been horrible, with all the
technology trying to handle the cascade of problems from both these
diseases in the same person. I watched his devoted parents sitting by
the bedside amongst myriad tubes and paraphernalia that characterize
modern intensive care.
Two years ago the 12 year old sister of this little boy died of Cystic
Fibrosis. This was a girl with a beautiful smile-a source of inspiration
to all about her. The grief of her parents and her little brother was
profound. The boy had frequent talks with me about his sister. He
couldn't wait(at 4 years of age) to come in, climb on my desk, and say
"Let's talk about _____!" He would then tell me how he saw her in heaven
with other angels all dressed in white, still looking as radiant as she had
in times past, with her golden curls spilling down to her shoulders. He
glowed as he talked about her, and eventually he helped his sad parents go
to the cemetarywhere he stood talking to his sister at her grave. In a few
monthes, he seemed finally to have finished grieving, and he no longer felt the
compulsion to discuss his sister as the main reason for our visits. Although
his Cystic Fibrosis flared up, he plateaued and remained stable for two years
until he came down with leukemia. His short life was snuffed out by just too
much disease. I had many questions, the most striking of which was whether
there was a relationship between his sister's death and his leukemia? Some
might say yes. At the same time, it struck me how some people are confronted
with a great burden of adversity and suffering, while others seem to be spared
such large doses. It seems an incomprehesible fate that some, such as these
two parents, have so much to bear. I have witnessed how important faith has
been fore people faced with disastr. the mother of the little boy said she told
him that was pretty sick. He agreed. She said God might need another angel to
join his sister in heaven. he seemed to consider this picture with some deep
thought and agreed that, yes,"God might need another angel in heaven,"
Seeing suffering is a common experience in the life of a physician. Strangely,
I've noted more similarities across people than differences - most show remarkable
strength in handling major events. With support from family and medical staff, they
somehow maneuver through the complex flow of therapy and suffering. At times they
rage against the unfairness of their lives, and, then, they settle back into the
unnatural current once more.
For our part as physicians, the process of care needs to include an ability to
listen to the pain without the encumbrances of false assurance. Quiet reflection,
untrammeled by the noise and rapid pace of life, allows the evolution of perspective.
It is a shared sadness - loss and pain in the patient as well as a sense of failure
and caringin the physician. It becomes almost a bond of strength forged between us
so that, even in the midst of tragedy, the experience somehow also takes on rich
and positive overtones.
How much can one bear? The question may seem to belabor the obvious. Yet it is
important to incorporate it in our sensitivity so that we quitly listen to the pain
and, thereby, relieve it in small measure. When human beings share in such struggles,
tolerance and resilience tend to grow stronger. Isn't this by itself an important part
of our role as healers.
About the Author
Dr. Gulio Barbero was part of the research team that described Cystic Fibrosis 50 years
ago. The late professor emeritus pioneered special diets that helped improve the life
expectancy of Cystic Fibrosis patients from just a few years to nearly 31 years today.
A great man which will live in all our hearts forever.
Email: jshass@fidnet.com
