«

»

Sep 15

Musings on Death With Dignity

Suicide: a Strictly Personal Decision?

“Flowers for Algernon” tells the story of Charly, a retarded man who becomes a genius following an operation successfully pioneered by Algernon, the laboratory rat. The tragedy is when Charly realizes that his miraculous improvement is slipping away and his intellect is diminishing as Algernon’s did.

This story made me start thinking that our intellect is what makes us most human. It is what gives us the ability to create, plan, ponder, solve, love. What happens if the intellect is impaired or absent? Over the years, I came to the conclusion that I wouldn’t want to live without my intellect intact, that my loved ones would witness the Don that they knew and loved disappear into that vacant space that may cause me no pain but certainly causes emotional pain to my loved ones.

I witnessed friends succumb to senile dementia and Alzheimer’s and watched their loved ones suffer the loss. Like Charly, the afflicted person at first realized painfully what was happening and took steps to avoid the problems that attended their loss of mental capability. One friend, a lovely woman then in her fifties would wait outside in the cold of winter for the taxi because she feared that she would forget that she had ordered it. The last time we saw her was at a concert with her husband. She loved music. She hummed along, but she didn’t recognize us.

Yet another friend, an older vigorous woman was endlessly cheerful around us, but she recognized only her daughter. Three years later, weak and frail, she didn’t even recognize her own daughter. She and others we knew convinced me that should I learn that my fate was to be the same, I would take my own life rather than subject my loved ones to the suffering that accompanied the failure of my intellect.

Until November of 2011, I gave little thought to the loss of physical abilities. That fall, I learned that I had a brain tumor atop the brain stem that would cause me problems if left to develop. I emerged from the operation in late November unable to swallow, able only to whisper, nearly deaf and unable to walk a straight line. Months of therapy taught me to swallow small amounts very carefully allowing me to at least taste real food, gave me a voice somewhere between a whisper and Satchmo and allowed me to walk a reasonably straight line. Dual hearing aids permit me to hear a limited range of sounds. However, a growing numbness on my left side has reversed the walking ability to a drunken stagger. I am still fed three times daily a liquid diet through a tube into my stomach. Despite small initial advances that have since stopped, all this persists nearly two years after the operation.

I have been told that I was near death twice after the operation. No tunnel. No bright light. Nothingness. Peace. But I was prevented from crossing that threshold. How many times since then I have wished that I had been allowed to remain in that nothingness.

After living an active life in extraordinary good health, the abrupt loss of so many abilities that we all take for granted led me to realize that loss of intellect was not the only loss that would lead a person to seriously contemplate suicide.

Have you ever stopped to think how many of our social interactions revolve around eating? We meet friends at the restaurant or invite them over for dinner. It’s now torture for me to watch others eat. I can’t swallow my saliva and must spit frequently. Talking is not only difficult but quickly tires me out. The result is that my social life is essentially nonexistent. My substitute is the computer, reading and this blog. Fortunately, my intellect has largely survived intact…but I am nearly eighty-years-old with a genetic heritage of great longevity, normally reassuring news. What does the future hold? Will I live to ninety and beyond with this disability?

My wife eats many of her meals alone or she joins her brother’s family or friends who invite her to dinner with them. She spends as much time as possible in her studio with her art projects. She frequently travels to Stockholm to visit our children and take in the art exhibits. Understandably, she is stressed by the added responsibilities she has had to take on since my disabilities arrived. Even more a problem from my perspective is that she is so opposed to my philosophy regarding the right to determine my own fate that she refuses to discuss it seriously.

In light of all this, I’ve had to discuss my thoughts via email with an old friend who’s a clinical psychologist. She led me to contemplate that Donne’s “no man is an island” has more than just poetic meaning. Do I have a responsibility to others beyond myself?

Before my exchanges with her, I observed with concern and anger the prolonged political circus that accompanied the case of Terri Schiavo where politicians and religionists fought her husband’s efforts to end the life of his brain-dead wife. Would I want that to happen to me? I thought of Charly. I thought of the appeal of nothingness.

I became a member of the Swiss organization Dignitas that is noted for fighting for the right to die of those for whom continued life is a burden. Writer Terry Pratchett, who suffers from early onset Alzheimer’s, has filmed a compelling documentary about the issue of death with dignity. All of this coincided with my philosophy of the right of the individual to determine his/her own fate. But I gave little thought to one’s need to consider the feelings of others. Donne’s “no man is an island entire of itself” has to be weighed in the scales, too.

But wait a second. Might giving greater weight to the opinions of my loved ones result in my being condemned to a worse fate than the early dignified death desired? Medical personnel customarily seek to prolong life that may lead to greater suffering by their patient. Pain relievers may dampen the pain, but what about the intrusions on the patient’s bodily integrity by needles and tests? What about religious hospitals and their procedures? What about religionists themselves? Or politicians? All of these and more may condemn the patient while bowing to the wishes of others. Has the patient written a living will or a Do Not Resuscitate order? Is it being honored?

While I wrestle with these conflicting philosophies, I sit at the computer, I read, I exercise to no apparent beneficial effect and I blog…and I watch the impact of my disabilities on the ones I love.

But not a day goes by without thoughts of ending my own life. On my own terms. Death with dignity. Nothingness.

11 comments

Skip to comment form

  1. alysonstover

    Sending you smiles and love, Don. xo

  2. Mary Ann Conley

    The mother of a friend of mine and the other grandmother to my granddaughters recently had a cerebral hemorrhage leaving her paralyzed and unable to speak. In essence she was “locked in and no longer able to care for herself. Her family suffered in fear that she would linger in this condition even though they deeply loved the fun loving, cheerful, gracious lady who had cared for and nurtured them for so many years. She had truly disappeared. Fortunately, she did die very shortly.

    We would all wish to die with dignity at the earliest possible moment if we found ourselves in that condition and I would pray to have assistance in so doing. I would hope my family would lovingly give me death when I was no longer able to give.

    The problem is when you wish to die but when you are still giving to those around you through your love, support, and intellectual endeavors. Why would anyone want to let that go? Would you want to cease that interaction that brings value to the lives of those you love? Would you deliberately say I am no longer a person of interest and disappear even though still living? Wouldn’t it be weird to move to LA and live alone in a hotel room?t

    Going back to your original point, it is our intellect that gives us the ability to ponder, love, create, nurture, and interact. That is what you are giving to those you love and why they dont choose to let you go.

    1. Don Bay

      Thanks to maconley for a thoughtful comment on my piece, “Musings on Death With Dignity.” It raises issues that can’t (shouldn’t) be responded to in the limited and not-usually-read Comments by the author. Consequently, I will address my reply at greater length to the issues raised in a regular posting on the first page of the blog. I will appreciate readers’ thoughts.

    2. Kathlena Contreras

      “The problem is when you wish to die but when you are still giving to those around you through your love, support, and intellectual endeavors. Why would anyone want to let that go? Would you want to cease that interaction that brings value to the lives of those you love?”

      Not only that, Mary Ann, but I’d assume that Don also enjoys this aspect of his life. While it’s satisfying to give to others, the pleasure of knowing we’re useful, valued and loved provides balance– some take along with the give to provide a good life.

      1. Don Bay

        Thank you, Kathlena. Another thoughtful comment that deserves a longer reply by the author. I will respond shortly on the first page.

  3. Dave Meyers

    Oh Don, the things we’ve done and the things we’ve seen.

    My long friendship with you has been so valuable to me. I believe that I could count, on one hand, my true long-term friends. But none would stack-up against you. None can compare to the friendship that I have enjoyed with you and Ewa for all these years.
    Memories from our adventures in the 70’s and 80’s as strapping immortals are among my fondest. So, how strange it is now to find myself half a world away with thoughts parallel to yours running through my head. And, how strange that you and I have had a medical event so similar. You with an intervention to the brain stem that didn’t end the way you had hoped, and me with a strange stroke affecting the same region.
    You, the more severely disabled, me with the ability to walk, talk, eat, and socialize, but left with the entire right side of my body numb, tingly, and weakened, as a leg or arm might feel when it “falls asleep” from laying on the couch in a bad position.
    This condition added to my already compromised upper limbs due to a history of cervical issues has worn me out over the last year. It has robbed me of my enthusiasm, my stamina, my joy, and…sadly…my will to live much longer with these terrible feelings.

    So, as I read the thoughts in your elegant piece, I nod with agreement over each point that supports your overall view. But I cry, even as I type this, to think of my dear friend departing this earth. I cry for myself, and my similar thoughts of just simply…stepping out. I keep waiting for recovery around the corner, as I know that you do too. But I also know the frustration that builds as time goes by and no recover, or very little, makes itself evident.
    So, what do we do my friend, what do we do? Do we check-out and leave those who support us and love us and pray for our recoveries too? Do we leave children, wives, and partners, to anguish and to announce to the world that we gave up and committed suicide?
    Because that’s how it looks to others…. really…people who commit suicide have found a permanent solution to a possibly temporary problem…. right? Isn’t that how it’s seen by most people.
    Well, the problem is, that they don’t feel what we feel…. they can’t feel our altered sense of place in everyday life, the death of our contentment, the difficulty that every gesture and act, formally preformed with ease, now presents to us…and they don’t understand our simple desire for peace.

    What about the likes of Stephen Hawking, confined to a chair, not able to do much of anything for himself…. What about vets who have lost limbs and suffered unspeakable damage to body and mind…they go on…don’t they? Maybe.
    Is that enough for us to rally and decide that we have some fight left in us? I don’t know. Every person can find hidden strength, hidden ability, hidden reserve. But every person knows when enough is enough, and I do believe that every person should have the right to decide…. Do I stay, or do I depart?
    I believe that we each have that right. How that matches up to our duty and consideration for our loved ones… I don’t know.

    What about my beautiful partner Marilyn, whom I love like I’ve never loved before, who stands by me, supports me, roots for me, and helps me focus? All the while I worry that she will tire of the events of this last year and disappear from my life.
    What about my beloved Sister, who provides a shoulder and advice that mean so much to me? What about my Sons…. with lives of their own, far away, who I have basically sheltered from my real pain.
    What about me Brothers, my few, but close friends? What do I owe them?

    One part of me says, “they’ll understand, they love you, they’ll be happy that you aren’t suffering any longer”. Really? Will they? Do I need them to forgive me? Is that more important than my peace? I don’t know.

    Dear Friend, although I see our situations to be similar, I don’t know what you feel. I know that you hurt, but to what extent your daily misery strips away your will to go on, I don’t know.

    I will cry, but I will understand. Maybe for now, we can hang on for just a while longer. What do you say?

    1. Don Bay

      Wow! Dave, I think you just wrote my reply for me. Thanks for your heartfelt observations. Really!

  4. Marilyn Feaster

    Don,
    While you have some valid reasons to entertain a drastic solution to your situation, there is always the possibility of new medical advances. We have not walked in your shoes, faced the losses you must endure, or summoned the courage to persevere through tremendous challenges. You, like Stephen Hawking have gifts in the intellectual realm, an artist’s sensitivity, family and friends all over the world to share your wit and insights with, and the love and support of your immediate family. I wish that Dave and I lived closer so that we might be an active source of encouragement for you. My “2-cents” would be to focus on what you can do and onto the positives you possess and to keep hope alive…that seems to be crucial for your acceptance of this current state. Through email comments, it is difficult to establish tone. We can only imagine how difficult it must be to deal and cope with everything you aren’t able to do.You want desperately to return to your active life! We understand that, Don. Please know that we value and love you and Ewa. We only want the best for you…Sending our positive thoughts and hope for a breakthrough with your treatment and an outlet for your creativity. Love, Marilyn

    1. Don Bay

      Thanks for the support and your love. You and Dave are in our hearts. Fingers crossed that one of those medical miracles arrives.

  5. Susan

    Don ,
    I’m wondering if your intelligence can find a way to be
    Peaceful no matter what comes your way?
    Death will come in a very short time no matter what.
    We are getting up there in age my friend. Why rush
    into death when there are still things to feel and
    people to love? Are there things you read that make
    you laugh and think and grow as a spiritual
    being in a compromised body? Do you have great
    music to uplift your spirit? You’re writing a great blog
    but how about treating readers to a book?
    You have
    a life to tell. Even short stories you’ve told are funny
    enough to tell others who have never heard them or
    would relish in new versions.
    Do you walk outside to see the stars and sunrise?
    Can you take a deep breath?
    I’ve been through two breast cancers, two heart
    Attacks, two husbands, one kidnapped child and
    three of my best friends have died young.
    One was a suicide and he probably would have
    STILL been here if good anti-depressants had been
    developed way back then.
    Life is suffering and it’s also not. The mind can
    wreck us more than anything can. Can it not?
    If you were so fortunate to have experienced Peace
    for sometime in the hospital then you can have it
    again. Give it a chance.
    Sounds as if you have people who love you
    and people who feed you (not necessarily through
    tubes).

    1. Don Bay

      The thing we have to remember is that there are people who have it much worse than we, yet they keep on doing what’s within their capability of doing until they can do no more. You and I and so very many others have something to offer however small it may seem in the big picture. Let’s keep on plugging.

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>