Wednesday, October 16, 2013

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 At same time, my significant other grows more careless , distant and withdrawn.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.

Friday, April 19, 2013

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.





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.

==========



Wednesday, July 11, 2012

Always lazy syndrome

Once a year for posting seems plenty for my lazy ass self. It's not that I haven't had plenty to say, but between my fingers that don't cooperate and how whiny I think I sound....well.... Here is what I'm really noticing - every little thing is difficult these days. I am exhausted by minimal effort. I experience frustration on a daily basis. That means I can still do things - I'm not locked in and totally non functional. I think that's a good thing. Sometimes my spirit is willing, but....well that's a big but because most things I can't do. The mundane things - bathing, dressing, feeding myself are challenges I'm sick of. They are exhausting! I've given up cooking of any kind, the bed doesn't get made, blah blah blah. The amount of money spent on clothing is greatly reduced - instead it goes to a caregiver who makes sure I'm wearing clean underwear. I love her! The latest decline is my neck which, when I'm tired, seems to have a mind of its own and it is not in the clouds. Rather it's flopping onto my chest. Quite uncomfortable. The less I am able to move, the more my joints freeze. Well, my whole system is kind of freezing up (or conversly, completely floppy.) Yes, I'm in pain. Along with my physical deterioration. I find my tolerance for mental stimulation greatly diminished. About five minutes of obnoxious people, loud tv, music or crowds is all I can tolerate. So parties are not on my list these days either. And my patience for idiots, fools (never a strong point for me) is almost nil. Maybe that's a good thing too. I don't have time or energy. Hell, I don't have time or energy for the people I love!!!! Here's what I've finally learned. An ALS gift? Don't argue with stupid or crazy. It's pointless. Oh duh! It took ALS to get me to that conclusion? okay, I'm an idiot sometimes! How much time have I wasted doing that in my life? Access a Ride has taught me this valuable life lesson, and I'm truly working on ways to deal with my frustration and lack of patience. What a bunch of idiots and what a degrading experience this delightful service provides. And BTW, please don't ever tell a handicapped person how fucking lucky they (we) are to thave all the wonderful services we have. You able bodied people really have no clue if thats what you think. You be the Pollyanna - I'll be the one waiting outside in my wheelchair hoping the driver will show up in time to get me to my appointment. There are many rules - rider must be on time, but driver can be up to 1/2 late for "promised" pickup time. If you have a 2:00 appointment they may give you a 12:43 pick up time, even if the destination is 15 minutes away. If appointment is for 2:00 and said appointment will take only 15 minutes, you aren't allowed a pick up for at least one hour past appointment start time. So that 2:00 appointment time necessaries a 3:00 Pick up request which could end up being another hour for "promised" pickup time, plus another 1/2 hour wait time granted the driver. I know! Just think - instead of writing this I could have spent the whole afternoon taking advantage of one of the wonderful services provided me. I'm such an ungrateful bitch! That is Ungrateful whiny bitch to you! But, really, it's stressful, annoying and degrading. It's hard to be thankful sometimes. Time for a delightful happy hour drink!

Wednesday, July 20, 2011

human guinea pig

I'm always up for an adventure so I've scheduled myself to screen for an ALS  clinical trial (NP-001),  currently in its second phase on July 29th.  I always wanted to sign up for a trial to cure diabetes but the opportunity never presented itself as I was always too healthy.  Now, being reasonably healthy and relatively early into this new diagnosis should serve to get me in.  The diabetes doesn't automatically shoot me out of the running.  We will see.  I already rejected entering into a trail in which my neurologist is one of the primary researchers because it included a hickman port and massive doses of  antibiotics which could possibly damage organs.  Thanks, already got a disease that wants to mess with the organs so I'm not going to do something to help that process.  Let's try another tree to climb.

In the meantime, I'm just trying to live my life. Although my progress is slow - i.e., I'm not in a wheelchair and I don't need a feeding tube or help breathing yet I am weaker by the day.  I still seem completely normal unless you see me trying to use my hands or get up out of a chair or use my arms to lift anything or you talk to me when I'm tired and I start slurring like a drunk.  All things considered I'm wonderful.  All things being relative.

This summer, I passed on sitting in Central Park to get free tickets for Shakespeare in the Park because I knew the energy expended would cost me three days down but my wonderful bridge buddies kept up the tradition and the beautiful Miranda (BFF) gave me her extra ticket.  JP thanked me too because it meant he didn't have to go.  Measure for Measure - what a confusing play by the old Bard and the actor's choices, especially Isabella, were hmmmmm.  questionable.  But what joy to sit in the middle of Central Park, in a beautiful outdoor theater, with a full moon rising!  The evening was beautiful.  just in time as now NYC sucks the life out of you with its heat and crushing humidity.  I love my air-conditioning and may not leave my apartment - BECAUSE  I don't have to.

My life these days is devoted to friends, eating and drinking really tasty meals (with friends), yoga, acupuncture, Structural Integration, occasional gyrotonics and feldencries work.  Oh the joy - and what a life (too bad for these strings attached to my lifestyle).  Why are there NO studies on the impact of devoted bodywork on ALS?  mystery.....

 

Thursday, July 14, 2011