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Self-Deception in Life and
Death by Mike Rancer
Throughout the twelve
years of my son's life, I refused to believe that he would
die.
David was born with a rare genetic disorder, lived with
multiple disabilities, was hospitalized in critical care
at least once a year, and had other frequent medical
crises. But in the intervals, at school and in the
neighborhood, he could seem like any other child, full of
life and with a smile on his face that people never
forgot. Only my wife, my daughter and I understood how
sick he could get, and that his disease was both
progressive and fatal. But day to day he was also
generally healthier than others with his disease, and I
had a cousin with it who lived to the age of fifty. So,
for nearly all of those twelve years, we lived as if David
had a long life ahead of him. We worried more about how he
would fend for himself as an adult after we were no longer
able to care for him, than we did about planning for his
early death.
Was it self-deception? Looking back, eighteen months after
his final illness, it's clear that we deceived him and
ourselves about his future. He didn't die suddenly, so we
had some warning about what was coming. But until that
final illness, the one that made clear how destructive of
the body the disease familial dysautonomia can be, we
talked and acted as though death was not on the list of
possible outcomes.
We insisted that he go
to school, think about college, travel the world with us,
and be an active child. He responded with hard study,
attempts to play sports, and obvious joy wherever he was,
whether on the beach at Santa Barbara, or in front of
Windsor Castle. During those scarier times, when he was
sick, and would ask, "Am I going to die," we would answer,
"Don't be silly, we just have to adjust your medication
and you'll be up again tomorrow morning." And we were
always right, except for the last time that he fell ill.
As I continue to look back, I know, for us, that
self-deception was the right thing. It allowed us to focus
on the quality of David's life as he lived it, and to
share in the joys that he found, rather than turning
inward and obsessively wondering when he would die. It
allowed him to have the dreams that all young children
should have, of growing up, of becoming independent
adults. Most important, it gave him the strength to pursue
and live his life to the fullest, instead of retreating
into a secluded world where death was all that was visible
on the horizon. In our case, in David's case, ultimately
the primary consequence of self-deception was the ability
to fully enjoy a life that otherwise had no promise of a
future. We cherish the bright memories that those years
left behind, in contrast to the darkness that we refused
to let consume us.
Mike Rancer serves as FD Hope treasurer, and is Chief
Administrative Officer for the library system at the
University of California, Berkeley. Mike’s essay,
“Self-Deception in Life and Death” was awarded first place
in the 2003 Lili Fabilli and Eric Hoffer Essay Contest.
Mike’s son, David, died from FD at the age of 11 in 2001.
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