Sadness

Sadly my brother left us.  I am utterly defeated, my heart broken, sadness overwhelming. At same time, my significant other grows more careless , distant and withdrawn.  Emotionally cruel.  Dropped me on Thursday, not intentionally, just not present or paying attention.  No broken bones, hut sprained wrist and very bruised ribs.  I grow weaker by the day, more physically needy and dependent. Need a plan to leave husband, have 24 hour care.  Between rock and hard place.  Not safe.  No safe place to be.  Emotional & physical hell.

My beautiful big brother

I want to say beautiful words to describe my dear brother but I am not creative enough or talented enough to do so.  He who has protected me, taken care of me, looked after me my whole life, is sick.  Very sick.  I have no words to comfort him.   I do not know what to do with my own feelings and emotions.  I feel so inadequate.

He called me yesterday, despondent. He tells me he just needed to hear my voice because I was so inspirational to him.  How can this be?  He is my hero.

Craig was always there for me (I have long ago forgiven him for his torturous treatment of me - the kid sister) and now I think, shit, is he paving the way to death also?  I want to tell him to give that up,  he can stop, he doesn't have to go that far to be the best big brother anyone ever had.  He does not have to die first. Get well damnit!

So here we are, both with tragic diseases and I wonder who will go first.  In spite of everything, he is fighting the nasty cancer with everything he has.  He has not given up his hope for recovery. And I have merely strived for acceptance in my own situation.  No battle for me.  Although death is foremost on my mind, and what that means to the life we still have, I cannot have that conversation with my brother- he is not ready to discuss that subject.  He is not there.  And so I try my hardest to be supportive of his process.

I love him more than words can say.  Thinking of losing him makes me weep.  Me, who wants to be so centered, philosophical!  I cry for myself, I cry for his kids, I cry for his wife and my mother and father and sister and all the many others who love him so very much.  I cry for him because he is not ready to go.  And we are not ready to let him go.

Is this how people feel about me?  How can I be better at helping those who love me better accept my death?  It is easier to die first I think.

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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