What really matters at the end of life

This day is designated as “Suicide Prevention Day.” The Internet is chock full of exhortations to DO SOMETHING to prevent suicide.

I must admit that I think a lot about something that could be labeled as suicide.

The conditions one thinks of as being most likely to cause a person to consider bringing their life to a close are devastating physical illnesses such as terminal cancer, ALS, incurable painful diseases of various kinds. Physical diseases, you know.

But what about the pain of mental illness?

This is taboo. It is “the easy way out,” it is to be prevented at all costs.

At this point, I must insert a caveat:

I do not intend this piece to suggest to anyone that they consider suicide as a way of treating psychological pain. NO.

Mental illness is generally treatable. Some forms of mental illness are indeed temporary, such as most postpartum depression, and situational depression, and appropriate grief, which is often labeled and treated as a form of mental illness. Most forms of mental illness can be palliated to the point where they are at least bearable. Some people are fortunate to find medicines or other treatments that successfully treat their symptoms such that they are indeed able to live healthy, productive lives.

But what happens when every possible treatment has been given a fair chance, and nothing has worked, and the person is left living with unbearable psychic pain?

Is psychic pain by definition less painful than physical pain, say, that of bone cancer?

I would argue not.

In my own case, I have lived with mental illness all of my life. I became aware of it at age three. At age seven, I began to dissociate as a way of escaping from the pain. I had no connection to most other people.

As I grew up, the pain grew too. I did self-destructive things. I tried blotting it all out by over-achieving. Nothing worked. The pain began to overtake me, wash me away like a tsunami. A tornado.

I killed myself by inhaling a gas. Someone found me and resuscitated me. I hated them. I went on living.

Since then I have manufactured reasons to live: I wanted to graduate. I wanted to graduate again. And again. I wanted to get married. I wanted to get married again (no more!). I can’t do this to my son. Who would take care of my dog? Et cetera. I make bargains with myself. I feel better for a few hours once in a while. I see a beautiful flower, an elk, a stream with fish in it. I read a great book. Then the pain hits again, and only the deep, drugged sleep–if my body will respond to drugs, which it sometimes refuses to do, when a mixed bipolar state overcomes me–(and by the way, mixed state is the most dangerous of all, for suicidal behaviors)–can give me a few hours of blessed relief. Then, all I can do is hope that when I awake I will feel better. Sometimes that even happens.

Then there is the physical illness, which will eventually lead to at least hemiplegia (paralysis of one side of the body), and probably eventual quadriplegia. Even now, by the end of the day I am unable to hold objects in my left hand. From its source at the place where the nerves emerge from the left side of my neck to the tips of my fingers, throbbing pain and tingling and numbness and weakness and spasms. Sounds like a walk in the park, doesn’t it? Yes, I have been offered surgery, at the expense of a 25% chance of waking up quadriplegic. No thanks, I’ll take my chances with the natural process.

This, combined with the depression, is just barely tolerable. But I keep on keeping on, because I still have things to live for, and I still have ways of dulling the pain when it overwhelms me.

I do have an end point in mind, but I haven’t reached it yet.

I have goals: I want to see my son graduate with his Ph.D. I’d really like to see him married, but there’s no guarantee of that, since his last girlfriend dumped him the day before he was planning to propose. We shall see.

Of course I’ve been sent a sick dog who needs me. Her life, like mine, and like everybody’s, is self-limited. We shall see.

In exactly three years, my income will disappear. I will have Social Security, which does not even cover the cost of my medicines plus Medicare premiums, let alone other expenses of living. I am totally disabled, mentally and physically. I have no other means of support. This, then, if nothing else magically shows up, or if nothing else intervenes, is the end of the road.

For me, this is not a dreaded outcome, but a comfort. It gives me a timeline. There are things I want to accomplish. I want to finish the books I’m writing. That’s becoming more difficult, because my left hand can no longer type. I’ve tried and tried to get Dragon Dictate to recognize my speech, but I have some kind of palsy that affects my tongue, and Dragon just isn’t up to the task. (I wonder if that has something to do with the fact that my fingerprints have also disappeared. That’s it! Laura, the one-handed safe-cracker!)

Yesterday I read an article in a medical journal, written by a physician in Belgium, where, like Switzerland and Holland, psychic suffering is considered to be on a par with physical suffering. In these three countries, euthanasia is legal, and people suffering from intractable psychic pain are permitted, after extensive evaluation by three separate psychiatrists, to request euthanasia by means of thiopental, a potent barbiturate. Only about half of the people who apply are accepted, and of those who are, less than half actually go ahead and take the medicine. Those who don’t said that just knowing they have the means gives them the strength to go on living. Those who do take it most often die in their own homes, surrounded by their families, in peace. This alone is a vastly different scenario from the way most people with mental illness live: in isolation, stigmatized, shunned. If people who live in supportive communities, with loving families, still suffer psychic pain that is so intolerable that they opt for euthanasia, how much more the marginalized and stigmatized mentally ill of the rest of the world?

Before I stop my own narrative and give you a special life-affirming video, I want to emphasize:

I DO NOT ADVOCATE, OR BY MEANS OF TELLING MY PERSONAL STORY RECOMMEND, THAT ANYONE CONSIDER SUICIDE AS A SOLUTION TO THEIR OWN PAIN. MY STORY IS MINE ALONE, AND IS NOT TO BE CONSTRUED AS ADVICE OR SUGGESTION.

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31 Comments

  1. Laura,

    Some questions pop in my mind.

    You are not alone. You have a son. I think he stays in Israel, right? Parents dont stay with kids in Israel just like in India? Are there old age homes?
    As you are aware, living in old age homes in India is still not approved by society. Children have to take care of their parents, apart from the religious, social now there is legal binding for the children to look after their parents. In villages and small cities even the extended family like nephew, niece take care of widow and single uncles and aunts. Ofcourse things are changing here too but this is what I would like the culture to retain.

    I would just say that May you earn enough to support yourself financially.

    Miracles do happen right!

    Reply
    • Hi Ashu,

      My son and I now live in the United States. In the American culture, It’s rare (but not unheard of) for children to care for their parents. I returned from Israel to help my father, after a failed attempt to get

      Reply
      • :-)) ok Laura, I hope your need for independence is fulfilled by the divine till the last moment of your time on the earth.

        I hope my question did not hurt you.
        Sincere apologies if it did, even in an iota.

        Love and blessings to you

        Reply
        • Amen, dear sister. You may see me sooner than later. I do think that being near my guru–in his compound–might be better medicine than anything! Thinking very seriously of getting there while I can.

          Reply
    • Parents to live in Israel, where there is a program for foreign nurses who take care of the elderly and infirm. My son is a very high functioning autistic, who is in his last year of his Ph.D., and after he graduates then he will move somewhere else to do a post-doctoral fellowship. After that, his first teaching post, and maybe several moves after that. Our lives and culture are generally separate from those of our parents. Also I wouldn’t want to live with him. Being autistic, he is self-centered and impatient with people, although he is wonderful with animals! Old-age homes there are, but they are horrible, and I am a recluse and can’t stand being around other people. I would much rather leave the world in peace and quiet. I have no family to take care of me, wouldn’t want that anyway. I will go gently and quietly, no violence to mind, body, or soul.

      Reply
  2. Hello, Laura,
    I haven’t been around for a while, but I do want you to know that you have been in my thoughts from time to time, and I’ve been hoping you have some peace in your life/yourself. I am currently very contemplative as my wonderful mother and friend just died a couple of days ago. If you recall, she had a long struggle with Alzheimer’s (living in a way she explicitly did *not* want to live for so long) as well as a great deal of various chronic pain throughout her body. So, in many ways I am so very joyful that she’s with God now and fully reunited with my dad (they shared a beautiful relationship/marriage!) and that she is free of the mental and physical pain of her body. Yes, I am grieving and sad…the end of a grieving process that has in some ways been going on for several years because of the Alzheimer’s. Anyway, I don’t want to get into all of that in detail, only wanted to mention my mom as an example of someone who would have wanted to live in a state where she was allowed to decide when to end her life. I knew this, not only because I know my mom, but she also made her feelings and wishes well known. I support euthanasia and believe it should be legal, with the whole doctor’s approval etc, throughout our country and the world. For ALL types of pain, including psychic pain. That will likely be a long time coming since people who have never experienced the pain of mental illness have no understanding of how horrible it can be, especially if it’s unresponsive to every treatment. I only have one thought that recently is causing me to take a pause and allow myself more time to think and meditate and pray upon this issue. And that is this: when my mom became ill with pneumonia last week and all us kids decided not to treat it other than keeping her comfortable and w/out pain/discomfort I moved in with her at the care center where she has lived for so long. The staff was so thoughtful and kind about bringing an extra bed in for me, making sure I had meals, hugs and support, etc. for the five days I was there with Mom prior to her death. During this time person after person after person that had cared for her and worked there came in to see her, to say goodbye and to see me. Even a few folks who no longer worked there, but had heard she was dying and wanted to come. Every single one of them expressed to me how much they loved her, what a truly wonderful and special person she is and how she had touched their lives. Now, this is a true and beautiful testament to my mom because even people who had only loved and cared for her the last few months (when she couldn’t speak intelligible words anymore except on rare occasion) could see and feel the beautiful soul that she is and were blessed by her. Putting aside how much that touched me, etc, this has me thinking that God ensured that the gifts he gave her to share with people in the world were used right up until the very end. She touched so many people’s lives in a beautiful way, taught them lessons of life long after she would have ended her life here on earth. That gives me pause. She is now, I’m sure, so grateful that she was able to do that. She would have chosen to live in that pain in order to do that, because that was the kind of person she was/is.
    I pass this onto you because when I read the title of your post it was very timely for me, even though what you wrote wasn’t really what I expected. You are an intelligent and spiritual woman (among other things, of course) and I thought you might appreciate knowing this so that you can have some more things to think about on this issue. Please know that I am not attempting to sway you in any direction at all! As I said, I am just now beginning to try to fit this in with my current beliefs and find out if it changes them at all, and I certainly wouldn’t presume to attempt to alter your thoughts on it at all for it’s not my place in any sense.
    Sending much love, blessings and peace to you, my friend. Sara

    Reply
    • Wow, Sara, I am so happy that your mother had a good death. Alzheimer’s can be a gift, because people who have it usually are not conscious that they are demented.

      I watched my father slowly deteriorate over 10 years. The last four years, he forgot how to read and write, and since he was a very literate man, this was torture for him. He had vascular dementia, a consequence of 50 years of extremely well controlled diabetes. Up until the age of 85, he got up at 6 am to work out. He worked in his studio and made gorgeous work until one day when he was 85, he made a rack full of gorgeous ceramic art, walked out, and went back again with my help twice. The first time, he made a small vase and left it on the wheel. I cut it off and finished it for him. The second time, I wedged the clay for him, but he couldn’t center. That was the last time.

      He lost the use of all his limbs, had to be fed and toileted, lost control of his bladder and soaked the bed every night. My narcissistic mother mocked and screamed at him.

      All this time, he was conscious of everything. He begged me to find a way to euthanize him, but I couldn’t do that. His friends abandoned him because they couldn’t bear to see him in such a state.

      My mother did things to him that I can’t mention. And when he was dying, she left the nursing home (he ended up there due to something she did to him). I stayed with him, and that last night as he was dying I stayed in the sterile room where they put people to die. I was glad that he and I had that special last night alone together, as we were very close. As he was taking those last few breaths my mother walked in so she could say that she had been there when he died.

      I have inherited most of his medical problems, except for the diabetes. I D do not intend to get to the point where I can’t even carry out my own deliverance. I have no friends to help and comfort me, my son will not be there for me, I cannot go to a nice care home because I would be on Medicaid and the Medicaid nursing homes are hell holes, and even if they weren’t the idea of being in a group setting gives me such terror I would shoot myself before going into such a place, I don’t care how “nice” it might be. I am a recluse. I want to choose my death, where, when, and how. I know that some people have good deaths, and that’s wonderful. Mine will be good, too, if I am fortunate enough to catch the disease before it cripples me beyond the point of no return. That’s the way it is, Sara. Every case is different. Every person is different. I hate my mother with a passion, because she tortured my father, and she tortured me, even while I was there to help (try to protect, unsuccessfully) my poor dad. After I’m gone, the world will still turn on its axis. Love you, glad to see you back! Laura

      Reply
  3. Here’s an article I saw about pain relief for people who can’t get any relief. And have you tried Ketamine for depression. It’s being touted as the drug for treatment resistant people. I understand you have enormous pain, physical and emotional. But dear Laura, I will never be in favor of you ending your life. I’m sure your son will get married and have kids. Then what? You’ll miss your grand children!! Love and hugs girl.

    http://www.neuroscientistnews.com/clinical-updates/new-technologies-can-help-short-circuit-chronic-pain

    Reply
    • Thanks for the article! I’ve had many of those interventions, which are temporary at best. More than the pain is the problem of spasms and paralysis. Since there are bony structures compressing my spinal cord at the C5-6 level, the eventual result will be total body paralysis, maybe even requiring a ventilator since there’s a chance my respiratory muscles will be affected. That means nursing home, since there is nobody to take care of me and I am homeless. That is a life that is unacceptable to me.

      Reply
  4. I wish I could say oh so many
    But I can not
    I’ve been down this road
    And it’s not pretty
    All I can say if
    I feel the pain
    As always Sheldon

    Reply
  5. I’ve been having physical issues and pinch nerves,I went to a chiropractor
    He sucked have to find another
    Don’t give in
    Your a fighter
    Hold on to your healing spirit
    Lite, love and prayers
    As always Sheldon

    Reply
    • Be careful of chiropractors. If you have pinched nerves in your neck, please do not do chiropractic. There is a study on the large number of serious spinal cord injury of the cervical spine due to manipulation. Acupuncture is safe and much more effective. It can ease the spasms and calm down the inflammation. There is also Craig PENS, which directly delivers electrical stimulation to the nerves via the acupuncture needles. For this you will need a Medical Acupuncturist, either M.D. or D.O. You can find probably several in your area on medicalacupuncure.org in the “Find a Physician” menu. I am planning to look one up where I am now. This is lean something I can do for others, but can’t do for myself! Also I can’t do it for others at this time because I can’t lean over! It’s aggravating….

      Reply
      • I have had acupuncture it was also a nightmare I had all these needles in me and felt more pain then before
        They left the room and I had no way to call them
        It was horrible
        Sheldon

        Reply
        • Yeah unfortunately that’s what happens when the needless are really doing their job. It hurts. I often don’t leave the room, because I meditate and pray while they’re under needles. If I do leave, I give them a little bell to ring if things get too intense. If so I usually add a needle to balance things out more. It takes six to ten treatments to know if there will be a lasting improvement. Sometimes it does happen in one or two, sometimes not, depending upon how long the condition has been present.

          Reply
  6. The author Terry Pratchett died earlier this year. It wasn’t unexpected; he had been living with early-onset Alzheimer’s, and had reported in an interview or something that when he died, he wanted it to be sat in a comfortable chair, with a glass of whisky, a specific piece of classical music playing, and to be in the garden. Or, if wet, in the library.

    If pregnant women can create a birth plan (which doesn’t always happen we know) then why can’t people who are ill (or elderly) create a death plan? Not that they must take it, but so that people can be prepared for when it becomes inevitable.

    Reply
    • Amen, sister. I watched paralsis creep up on my father, a result of a “perfect storm” of disease processes. I will never forget the terror in his eyes when he said, “How did this happen?” He lived (If you could call his personal hell “living”) for a year after that, in excruciating pain that my mother refused to treat, because it would make him a “zombie.” She screamed at him when he complained about the pain, when he dropped something…I tried to report it, but nobody believed me because she is a “pillar of the community.” When he asked me again why this turned out this way, all I could tell him was, “my Indian doctor would say, You’re burning off karma.” “Burning off karma,” my old beatnik dad repeated. “Well, that sounds right.” So we found a framework that worked for him, but it didn’t stop the pain or the abuse. The anniversary of his death will be on Yom Kippur, which begins at sundown on Tuesday, and I will say the special prayers for him, and know that his suffering is finished, hopefully forever. Thanks so much for your thoughts, dearest lady.

      Reply
  7. Reblogged this on William Chasterson and commented:
    You have been nominated for the Chasterson Award!
    https://williamchasterson.wordpress.com/2015/09/21/the-chasterson-award/

    Reply
    • William, thank you so much.

      First, I want to encourage my amazing readers to hop on over to William Chasterson’s blog and read. He is a beacon of honesty and thought-provoking-ness.

      Thank you, Rob, once again, for turning me on to another smashing blogger. You are a paragon of good taste 😎

      Since neither of my computers is operational at this moment, and I am spending money I don’t even have on this accidental rescue dog (you know, the one that was supposed to be my service dog but has turned out to require a good deal of service herself…), my blogging life is currently confined to what I can accomplish via my Android. Don’t ask me what kind of candy my operating system is…I’m already having to chant, “Don’t smash it, it’s all you have…don’t smash it, it’s all you have….” which is to say, it may be a while before I get to where I learn to make hyperlinks on this thing. So be patient…..

      Reply
  8. Thank you so much for sharing this. It’s nice to know that these feelings aren’t unique to me, however “I am a snowflake” I might be feeling on any given day. We don’t fight alone nearly as much as we think, because our words lift others as their words lift us.

    Thank you, again.

    Reply
  1. THE CHASTERSON AWARD | William Chasterson

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