September 26, 2011

"A way that's quiet and calm"? Not for me.

Dudley Clendinen has a terrible disease: ALS (amyotropic lateral sclerosis), or Lou Gehrig's disease. ALS is a progressive disease that gradually robs a person of his ability to move. The mind is alert, but trapped inside a body that can no longer perform the most basic functions. This is, undeniably, a tragic diagnosis. There are no words of comfort I can offer to him; everything would sound hollow in the face of the future he now faces. If I knew Mr. Clendinen, I wouldn't know what to say. But I can promise you I wouldn't say what a friend did after flying in from Texas to Baltimore to express his concern. According to this New York Times opinion piece written by Mr. Clendinen, his friend said, “We need to go buy you a pistol, don’t we?” Mr. Cleninden says, He meant to shoot myself with. "Yes, Sweet Thing", I said, with a smile. "We do." I loved him for that. 

Mr. Clendinen does not wish to try for a few extra months of life with a drug that may give him a few extra months. He doesn't want a tracheostomy to try to avert choking along with possible mechanical ventilation. And I understand his decision. I wouldn't want to have my life preserved using extraordinary means if I were in his shoes. I would choose as he has in that regard. So I'm with him so far.

But that's where we diverge. Mr. Clendinen has decided how is going to tackle his disease. He plans to kill himself before he becomes a "burden". Here he sums up what he plans to do "when the time comes".
I’d rather die. I respect the wishes of people who want to live as long as they can. But I would like the same respect for those of us who decide — rationally — not to. I’ve done my homework. I have a plan. If I get pneumonia, I’ll let it snuff me out. If not, there are those other ways. I just have to act while my hands still work: the gun, narcotics, sharp blades, a plastic bag, a fast car, over-the-counter drugs, oleander tea (the polite Southern way), carbon monoxide, even helium. That would give me a really funny voice at the end. I have found the way. Not a gun. A way that’s quiet and calm. Knowing that comforts me. I don’t worry about fatty foods anymore. I don’t worry about having enough money to grow old. I’m not going to grow old.
After reading his piece, David brooks - a New York Times columnist - said life was more than "just breathing and existing as a self-enclosed skin bag".  He expressed his approval of Mr. Clendinen's plan. But the only part of his plan I unreservedly support is the last two sentences. The heck with fatty foods. And the heck with money worries. Facing one's mortality has a way of stripping away the "little stuff", and with little time left to live, these things fade away in importance.

Mr. Clendinen describes his experience with his aging mother, and he wants to spare his daughter Whitney from a similar experience. He says, 
I spent hundreds of days at Mother’s side, holding her hand, trying to tell her funny stories. She was being bathed and diapered and dressed and fed, and for the last several years, she looked at me, her only son, as she might have at a passing cloud.I don’t want that experience for Whitney — nor for anyone who loves me. Lingering would be a colossal waste of love and money.
My father didn't die of ALS, but other factors rendered him helpless. He was rarely able to eat without choking and had frequent episodes of aspiration pneumonia that proved impossible to eradicate. He couldn't dress himself and could only feed himself with difficulty. He was unable to stand, couldn't sit unsupported, and wound up losing so much weight that, upon his death, he had a scant 125 pounds on his 6'1" frame.

I was with him throughout his last illness. When it became apparent to him that he would be unable to regain any sort of independence but would continue to decline, he decided to change to hospice mode. He took no medications other than those required for comfort. Close friends and family came to visit. Dad was up-front with them; everyone knew that he was dying. But the time we spent was not a "colossal waste of love and money". We used the time well. At the end, neither of us had regrets. Neither of us would have chosen to deliberately end his life by "a way that's quiet and calm". He was far more than "just breathing and existing as a self-enclosed skin bag".

Do I respect Mr. Clendinen's choice? Yes.

But do I agree with it? No.






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8 comments:

  1. WOW! this is a great post. I really can't respect his choice at all. One of the hardest parts of having pride is not being able to ask for help and knowing that we rely totally on someone else and in Mr. Clendinen case he will rely totally on someone else for everything. Since when is that a total waste of time? Since it means we have to admit our reliance on someone other than our own personal 'god' - self. Whew, I struggle with this alot too but am glad I wouldn't kill myself over it.

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  2. My Mom-in-law just died after approximately two years of needing our care, assistance and love. A "burden"? My God! The word even makes me weep. We cannot describe to you in human words the utter JOY she gave us ... and that's us being selfish.

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  3. Why can't we let others love us? Why would we deny ourselves the opportunity to learn great humility as we get ready to die? Pope John Paul II's Salvifici Dolores encyclical #29 tells us why God allows suffering and how we need to respond to those suffering. I can't agree with this man's decision nor respect it. Why does he want to deny others the opportunity to love him? It is self-centered choice, not submission to the will of God. The wisdom of this world is folly.

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  4. Let me clarify. I respect his RIGHT TO MAKE this choice. That is not to say I approve in the least. I do not.

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  5. I think I would do what your father did if I were in the same situation. Yet I don't think any of us know how we would really feel until we are there for ourselves.

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  6. Wow. My heart hurts reading this. I can not even imagine trying to make that decision for myself. I cared for both my dad and Grandpa until they died. While it was hard and cost me a lot, it was more than worth it. Visiting from Thirsty for Comments blog hop.

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  7. You've done such a wonderful job with this post. I commend your ability to try and see the situation from the viewpoint of the person actually experiencing it. Your experience with your father allows you to see the other side of it too.

    I personally feel that some of the people commenting are being a bit harsh. It's easy to have an opinion, it's easy to say what you think you would do in that situation, but I truly believe that being in the situation would be completely different.

    I mean, when I was pregnant with my son, I spent months learning about delivery, preparing myself for it, doing everything I could to make sure I would be able to handle it. None of that did me any good when I was told to 'push'. At that moment, I suddenly decided that I just wasn't ready to do this anymore. I just didn't think I had it in me.

    I can understand his viewpoint, especially after his experience with his mother. When caring for her, he obviously suffered with the fact that she withered away, that she was rendered helpless by her illness(es). Not wanting to put his daughter through that? I can see how he feels it would be better for her. She may not agree with that, but he obviously doesn't want her to watch him wither away to nothing. I don't see that as selfish at all.

    I remember quite vividly how it was with my grandmother. She had Alzheimer's, pancreatic cancer and diabetes. For a long period of time, she was quite unhappy, scared and in pain. It was so difficult to watch her suffer like that. I would give anything to have been able to keep her from suffering. When she finally left us, it was a relief because we knew that her suffering was over with, not because we were glad she was gone.

    I respect his right to make the decision he has made. I also don't think that I would decide the same were I in that situation, but I'm certainly not going to get up on a high horse and insult him for it. He's doing what he thinks is right, for him and his family. That's really all anyone can do.

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  8. Interesting post. I think it really is a great piece to start a conversation with loved ones. My dad's health is declining at a more rapid pace than we wish it would. After a couple days of visiting, I see his spirit leaving him quickly. It's all part of the process of dying ... which we will all do. Some of us will handle it more gracefully than others. While it's painful for those watching, I think about the person who used to be able to dance all night long, who could keep up with the best of them; now sitting in a chair watching life go by and wondering when it will all end but not being able to verbalize it because it would be such a downer to everyone in the room. It's gut wrenching for me.

    Your post is VERY thought provoking! Thank you for this.

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