What Does Quality of Life Mean to YOU?

Imagine yourself totally paralyzed just below your chin.  You can move nothing but your head.  And then imagine a ventilator attached to your throat to help you breathe.  This is not a temporary “nuisance” condition.  This is the life of Garret Frey of Cedar Rapids, Iowa.

Injured in a motor vehicle accident at the age of four, Garret was rendered quadriplegic and ventilator-dependent for life.  After the accident, Garret was immediately placed on artificial, mechanical breathing while his parents rushed to the hospital.  It would be months before they would know that Garret’s paralysis and inability to breathe on his own would be permanent.

After nearly a year in various intensive care units and a children’s rehabilitation hospital, Garret was discharged to his home, along with supplies which would fill the ordinary person’s closet.  Garret’s parents were trained to care for him but as they both worked, a full-time nurse had to be with Garret, severely depleting the medical insurance benefits.  For some time, Garret remained confused and depressed.

While others speculated about a vegetative, non-productive existence for the child, Garret, his mother and a Clinical Psychologist went about trying to develop the best quality of life possible, within the permanent medical parameters.  Over a period of seven years, Garret was taught to use his brain in order to have an entirely cognitive experience of life in which his remaining senses would become highly and acutely developed.  As Garret’s brain matured and he became emotionally prepared for his life as it was, his relationship with his psychologist was terminated.

Garret’s mother and the psychologist fought for a free, public education for Garret.  When the school board in Garret’s community resisted, the matter was adjudicated and Garret was allowed entrance into school.  The decision was appealed several times and eventually ended up in the United States Supreme Court where the Judges ruled in Garret’s favor.  The ruling has set precedence for thousands of handicapped children across the nation.

While the court battles went on, Garret learned to participate in a full public school life.  He was eventually placed in an accelerated academic program and he thrived both academically and socially.  In high school, his friends were trained in the operation of the ventilator and Garret was then free to attend concerts, restaurants and school functions.

In daily life, Garret continues to require 24/7 supervision for the care of his body and the functioning of his ventilator.  Garret considers his care and equipment simply a part of his daily life.  He sleeps through most of the personal care essential to keep his body functioning.

And so, we might just ask how the quality of life is determined for any one individual?  In all probability, we never know our own limits until faced with our own worst fears.  For some, it may be the loss of a limb and for others, the loss of speech, sight or hearing.  For some, quality of life is determined by athletic or intellectual skills; for others, by the accumulation of wealth.

For Garret, quality of life as a child meant that he was able to get a free, public education in the least restrictive environment.  As an adult, quality of life for Garret means he is able to be out with friends and that he has people who love and support him while he takes college courses and ponders the various mysteries of life.  Garret maintains a steadfast belief in God as well as an optimistic attitude about each and every day of life granted to him.

Finally, we might ask who should determine what the quality of life is for any one individual.  More and more, health issues are legislated rather than left to personal decision-making.  There are pros and cons to each side of the coin but for Garret:  “I do not remember the day I was born and I do not remember the day that I died.  I only remember myself AS I AM.”  (This is the first sentence of the book AS I AM by Garret Frey and Dr. Karen Hutchins Pirnot.)

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