Thursday, March 21, 2013

Aid in Living fully


Yesterday I testified in front of the legislature in Connecticut in support of a bill that would legalize aid in dying.  Opposition seems to boil down to two things - god & fear.  Anyway, I made a few people cry and the room was deathly (pun intended) silent during my testimony.  It was a very exciting day with lots of local news coverage.  Chuck has mastered my hair! Yay! I will try to post video....in the meantime...


Testimony by Sara Myers - 3-20-2012 - in support of
Connecticut House Bill 6645, An Act Concerning Compassionate Aid in Dying for the Terminally Ill.

My name is Sara Myers. I am 58 years old and i have a terminal disease.  Two years and three months ago today, I was diagnosed with Amyotropic Lateral Sclerosis or ALS,  commonly known as Lou Gehrig's disease.  This diagnosis was almost exactly 46 years after I was diagnosed, as a child, with Type 1 Diabetes.  Inadvertently, I have managed to become an expert in living with both a chronic and terminal disease.

ALS is a tragic disease and it is killing me, piece by piece.  There is no cure, there is no real medicine for me.  Most people with ALS die within 3 to 5 years of diagnosis. 

ALS is a progressively degenerative disease that eventually leads to total paralysis of the body, including the diaphragm which controls breathing, while leaving the mind and ability to feel sensation, completely intact.  

I am not scared of death, but I am scared of the way ALS kills.  This is not just another one of life's transitory hardships.  It has taken away my ability to earn a living in which my hands were the tools of my trade and is completely robbing me of my ability to be independent.

I now require help with most every thing I do - bathing, toileting, dressing, eating.  I will soon be in my wheelchair full time.  Everyday I lose something else.  Because my ability to breathe is compromised, everything I do is exhausting. 

Choosing to die is the single most serious and difficult decision one can ever make.  But  choosing to die is sometimes a totally rational decision and this is a choice I'd be so grateful to have, whether I use it or not.    Let me assure you, I am not depressed and I have the most supportive and loving friends and family one could hope to have.  I am not ready to make this choice today, but I yearn for the option to end my life without violence and without putting anyone I know in legal jeopardy.  Only under the protection of this bill would I be assured of the ability to have a self directed, safe peaceful and purposeful death.  Having compassionate care to make this choice and the legal right to do so would be an unbelievable comfort.  It would allow me to more fully enjoy the life I still have and sleep well at night.

This important debate will be challenging.  I most respectfully caution you to refrain from being influenced by those who may engage in exaggeration, misleading statistical analysis and misrepresentation.  I hope this process will be the measure of our collective wisdom, courage, honesty and humanity. Please think of me while considering this bill.

Thank you.

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