On courage

Furry

Because of my public blog posts about my experience with cancer, many people have told me “You’re so courageous!” and “I can’t believe how brave you are.” I always feel like a fraud when they tell me this, because I feel just as frightened as anyone else who expects to be dead before the year is up. But as my very wise mother-in-law once said to me, “Most people don’t understand what ‘courage’ really means. ‘Courage’ doesn’t mean that you have no fear. It means you do what you have to do, even though you’re afraid.”

I’m frightened not by Death itself, but by the nasty consequences leading up to the physical act of dying. More on that in a moment.

Death holds no fear for me because to me it simply represents the closure of the life cycle. It’s something that every human has done before me for a million years and more. It’s something that every creature currently walking, crawling, swimming or flying on earth will experience at the end of its life. Why be afraid of a natural process that is shared by all? Many people experience debilitating fear of things—spiders, storms, heights, etc.—that other people regard quite calmly. As a young woman I was terrified of what I imagined to be the agony of childbirth. Imagine my surprise and delight when at the age of 36 I finally went through childbirth and found it to be gentle and easy, in no way similar to any expectation I had held. It was all-natural, no drugs, and I was completely conscious the whole 24 hours of the process. It was the most magical and the most deeply profound experience of my entire life. During the birth my mind simply stepped aside and let my body take over (which it did PERFECTLY). So might not Death turn out to be similar to Birth in this way,  the body taking over from the mind and guiding it through an instinctual process that’s powerful and remarkable, with distinct stages to be experienced along the way?

Unfortunately, the modern experience of death is much like the modern default for childbirth: the idea is  simply to medicate the patient heavily and monitor the vital signs. Hospice keeps suggesting higher doses of narcotics for me, but I don’t really want to be stoned on drugs during my last weeks of life. I want to remain clear-headed as long as possible, so I can continue writing and engaging in my fiber-art activities. These things help me maintain a good quality of life and cannot be done in a drug-induced fog.

And yet the medical issues that plague me are very painful. I’ve already taken a course in mindfulness meditation for cancer patients. Are there additional alternatives to addressing pain in a non-drug manner? Unfortunately, palliative care seems to be built upon a foundation of drugs, drugs and more drugs. As I have learned the hard way, narcotics have extremely undesirable “digestive consequences.” And of course there are drugs to combat that problem as well, although they don’t work well for me.

If I could avoid all narcotics, I’d be in much better overall condition right now, and could meet my end consciously, without being a doped-up constipated zombie. As usual, I’m stuck here in Bloomington without the resources and options that exist in other states and countries. These include legal Death With Dignity; perhaps a center that offers Conscious Dying services; an alternative attitude toward death in general; and maybe a death doula to guide the process.

So, we’re back to the concept of “courage.” Although not frightened by the idea of Death, which I see as the welcome end of pain and suffering, I’m scared to death of what I’m soon about to plunge into: the loss of my body’s integrity and dignity; the humiliation of the bowels; the lack of viable non-drug options; the lack of understanding on the part of medical providers; pain followed by narcotic stupor. Scared? You bet I am.

But as there’s no alternative for me, I simply keep stumbling forward on the path I’m on. Is that real courage? I have no idea.

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21 thoughts on “On courage”

  1. Carrol, Bless you! I remember watching my thirty-nine year uncle go through this and feeling a strange sense of peace and renewal and then with my Dad. I think your view of childbirth does go along well with this after all I remember a baby being born the same day a beloved relative passed away soon after and what a unique and weird feeling that was. Wishing you all the best and sending many hugs from all of us.

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  2. Carroll, I have followed the blogs of a couple of people on their final journey. All have been profoundly moving. You are courageous in facing your final days and I fell honored to have known you and shared in your thoughts.
    I also did the natural childbirth, expecting that things would progress as they should and they did. It was primal and powerful. I have read books on death and the idea of a good death and wonder how often that happens. I think you will know if the pain is beyond bearing. Live well until you die.

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  3. Carol, thank you so much for sharing. A meaningful reminder of the inevitable we will all face and of the severe limitations of what we have to offer the dying in our current society.

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  4. I feel your frustration about the use of drugs and the lack of choice in how you die. I avoid pharmaceuticals as much as possible and would be furious if that were my only option to relieve pain. I applaud your courage in opting to be lucid as long as possible. Love and hugs to you.

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  5. Yes. “I’ve been absolutely terrified every moment of my life – and I’ve never let it keep me from doing a single thing I wanted to do.”

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  6. Thank you for sharing this Carrol. I really admire your courage and how you are approaching the end of your life. I think you’re right about there needing to be more discussion about death outside of medical settings – the Death Cafe movement is a really interesting idea. Sending lots of love and hugs x

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    1. Thank you very much for your support, Caroline! I was recently informed that a Death Cafe has started up here in Bloomington. I’ve joined its Facebook page and found many interesting links. I look forward to learning more.
      Hugs to you too, Carrol

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  7. Oh but there IS courage in being able to articulate so beautifully these things that many are afraid to consider.
    I’ve begun reading your book about the Showers Brothers, what a remarkable piece of history!
    Holding you in the light dear one.
    Emily

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  8. If what you have is not courage, I don’t know what courage is. As always, thank you for your incredible leadership. I am thinking, and hoping, that your experience will end up being unexpectedly less painful, like your experience with childbirth was. Whatever happens, I believe that your beautiful, crystal clear spirit, will carry you through. I love the expression that Emily used “holding you in the light,” and I am doing that too.

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