Monday, 07 May 2012 18:32
When I was in my late 30's, Multiple Sclerosis had ravaged my body and I came to a point where I felt as though I had been through enough. So, when my heart and breathing began to fail, and the doctors suggested I should receive a pacemaker and be put on a respirator…
I said “No.”
My 14 year old daughter was standing nearby when the doctors told me that if I didn't agree to these procedures that I would likely die soon.
I looked to my daughter and said, “I love you.” Then, I made some phone calls...and waited.
While "waiting,” my daughter begged me to do as they had asked. But, I refused these medical interventions knowing instinctively, that I had no interest in prolonging the inevitable. If this was to be my end - so be it.
I said to my daughter, "right now, I am very happy. I am happy because I remain "me" - but, the moment I am tethered to a machine, for G-D knows how long...I will be miserable and unhappy. I would rather be happy for a few minutes than miserable for a lifetime.”
My daughter, at first, was quite upset with my words - but, soon thereafter came to realize that I was just being ME. I was simply being true to myself.
Since the doctors could not assuage my breathing or heart issues, they sent me by ambulance to a larger hospital in a nearby state which had more sophisticated technology.
Upon arrival, I was admitted to the Neuro-Intensive Care Unit. Within an hour of arrival, I decided that this was not for me. So, I got myself dressed, gathered up my husband and friend who had followed the ambulance, and told them, "Let's go home."
Needless to say, they thought I was nuts-- but we left!
The entire trip back (1 1/2 hours ride) they were nervously watching me breathe--listening and wondering if I would die right then and there.
As we approached our home, I said, “I want to do my favorite thing before I die…eat out.”
So, we stopped at a restaurant and had dinner. I loved it!
Well, that dinner ended, and I continued to breathe. We went home and I have not yet “kicked the bucket.”
These events occurred some 20 years ago. Today, I am a Chaplain for Jewish Family and Children’s Services. Because of my own experience, I am better able to understand the needs of the dying, disabled, and chronically ill.
From my own life, these are some things I have learned:
1- Death is not an enemy.
I have no answers for why I did not die at that time. My breathing stopped at times requiring CPR, and my heart beat was so erratic - from 25 beats to 170 within a minute.When you add that to being paralyzed (off and on- depending on exacerbations and remissions), loss of hearing, and becoming legally blind...death was not such an enemy for me. Maybe it is because I didn’t see death as an enemy, that my medical decisions seemed fearless.
2- Quality of life is essential.
This experience really drove home to me that quality of life is essential. I would rather have one day of “fine” than many days of “horrific.”
Remember, I told my daughter, “I would rather be happy for a few minutes than miserable for a lifetime.”
I can say that and know I mean it. I have been tested. I know that should a like situation occur, I will again make these same kinds of decisions.
3- Live each day fully: with gratitude, but without regrets
At the time of this experience, I had a wonderful family, a great job, wonderful friends, and absolutely no regrets… nothing has changed.
Laurie Dinerstein-Kurs is an MS survivor and serves as a Chaplain for Jewish Family and Children’s Services in the Greater New York City Area. Assuming she continues to enjoy good health, she hopes to embrace life, enjoy family and friends and continue to make plans for the future.