Friday, September 7, 2012

As I Am: A Quality of Life Issue

I'm pleased to welcome Dr. Karen Pirnot as she talks about an amazing patient of hers, Garret Frey.

Welcome, Karen!

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 IAM by Garret Frey and Dr. Karen Hutchins Pirnot.)
Dr. Karen Hutchins Pirnot has worked with children and families in various capacities for the past forty years.  She is a Clinical Psychologist who practiced in Cedar Rapids, Iowa and later, in Sarasota, Florida.  For years, she worked extensively in the human services and juvenile justice systems as well as various school and hospital settings.  Dr. Pirnot worked with special needs children as well as children and families experiencing transitions and tragedies. Dr. Pirnot’s books are written to empower children and their families.  The books may be found on Amazon, Barnes and Noble and  


  1. wow! I think I now have to reconceptualize what quality of life means to me!! what a great story.

    Ted from Oregon

  2. I cannot imagine the strength of that man - and his mother as well. Courage has a new meaning for me.

    Alice from Georgia

  3. I guess the topic of who decides quality of life probably depends on the stage of life you're in. For me, it would have been really hard not to sit on the pity-pot and ruminate about what I don't have. People like Garret should be inspirations for us all to get back to the basics in life. Friends, family and simply experiences that dont cost a lot - that's what it's really about. Garret, you have inspired me. I'm going hiking.

    Sam W. from Virginia

  4. Ted, Alice and Sam-- Definitely a post that makes you think. Thanks so much for leaving your comments.

  5. I'm from Iowa and I remember reading about this story. I once saw Garret at an Iowa football game and thought to myself what a courageous man that was. I know Garret didn't make the decision for himself but he sure as heck did learn how to live with what he still had in his life! I give that mother a lot of credit. I guess he was lucky to find the right psychologist too. He should go on a tour so people could see what a normal guy he is. He would be such an inspiration to the rest of us who get down about really stupid stuff!

    Brittany B., Des Moines, Iowa

  6. Hi Brittany - I'm Dr. Pirnot and I really thank you for your comment. Yes, it was big news when Garret went through the court system. He did graduate from a public high school in Cedar Rapids, Iowa and is now taking college courses. His mother continues to be a wonderful support for him. Garret has been to visit me in Florida and has gone deep-sea fishing!!! He's quite the man.

    Dr. Karen Hutchins Pirnot

  7. Jordyn - What a treasure trove you've presented today.

    Doesn't this display the beauty and significance of The BODY of Christ? How would Garret have known how valuable he was if there weren't people who loved him always around him, determined to make his life a quality one, a valuable one, a life that counts? Because of his mother and the others who surround him every day, Garret can see Jesus at work through HIS vessels. Lovely.


  8. Man, I'm wondering how a family can afford to have 24/7 nursing care in an age where everything in health care is being cut to the bare bones! But, more than that, you have to love this guy. He's going after what he wants. As an adult, if someone asked me if I wanted to be plugged into a ventilator for life and couldn't move but that was the only way I could live, I honestly don't know what I would answer. Maybe the lady is right - it's in God's hands.

    Michael, Chicago

  9. Garret is an example of courage and determination to all of us. With the help of his mother, family and doctor he decided that there was a reason to live and value in the life he was given. An amazing story that was well-written and explained by Dr. Pirnot

  10. We have recently met Dr. Pirnot at our Curves for Women facility and have read Garrett's story. It is easy for us to understand Garrett's plight as I too have a similar story. My feelings are for myself I wish there were so mnay more things I could do which I will never be able to do. Garrett's adjustment is very admirable and he is extremely lucky to have support from the community and friends.

  11. I would like to add my comments as a Mom and caregiver to a disabled daughter. There are so many things I wish that my daughter could do and be able to do. Most importantly whatever the disability one should feel blessed if they have a true, caring and lasting friendship. I am so saddened to say my daughter does not have people in her life that care about her needs only selfishly their own. Garrett is indeed very blessed! Hopefully he realizes that.

  12. The reading this morning at Church was about the apostles fishing all night and catching NOTHING. Then Jesus comes along and asks these seasoned veteran fisherman--and Him, just a carpenter!--to try again, to cast their nets out on the "other side". They protest, but they do it, and they come up with their nets full to bursting. Garret has tossed his nets out to the 'other side', and his 'catch' is feeding all of us. He IS truly a deep sea fisherman!! May God continue to bless him for the struggles he has fought, for the pain he has endured, for the new perspective he has given us. His life has meaning! Spoken as one who has also struggled along life's path, as recounted in my book 'Graffiti On My Soul'and also has fish to share! Johanna

  13. I have read this book and it is very inspirational. Garret was fortunate to have such loving family, friends and a dedicated Phychologist helping him along the way. Reading the book most certainly reminds us how fortunate we are and to live each day fully.
    They did a wonderful job putting the book together.
    Phyllis, Kellogg Iowa

  14. I know Karen Pirnot and consider myself blessed to have her as a friend. She has written several books and they are all well written and come from the heart. While I have not met Garret, I know he must be a remarkable man. I highly recommend As I Am (Garrets story),Learning To Be Me, and A Common Lady. Pirnot has written many more books but these are my favorite.

    Debra Gaynor
    Readers Favorite

  15. I am very lucky to have personally met Garret in Florida and am well acquainted with both Karen Pirnot and also Garret's mother. They both are VERY remarkable woman and without both of their strength, Garret would not be in the position he his now: a young, bright man, severely handicapped, but with a positive outlook on life and the courage to pull through despite all the odds for the last (about) 25 years. The book As I Am has a special place on my bookshelf and has been lent out to many of my friends and students. About time to get a new copy, as the edges are starting to wear out with all the people reading it.
    I also agree to the comment above, people should give Garret to get out and talk about himself and show others how wonderful life can be despite the odds. Best wishes for Karen, Garret and his mom.
    Gina, Trier/Germany

  16. During the writing and publishing of "As I Am" I was blessed to get to know Dr. Karen Pirnot and the special soul that is Garret Frey. My thanks to Redwood's Medical Edge for acknowledging this great story and the dedication and devotion of Dr. Pirnot to Garret. They are both truly inspirational people. To anyone considering picking up a copy of this incredible book I'd say, "you won't be sorry."

    Susan Haley,

  17. I just cannot imagine how anyone could pick themselves up and make a life after such a catastropic event! I guess sometimes, it just takes a dedicated team of friends, family and professionals to formulate a quality of life. And, of course, it takes a lot of guts just to go on. Kudos to you Garret and to your mother and Dr. Pirnot.