Thoughts on Dying and Living

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Last week, I had an email from a friend wondering what I would say about Dudley Clendenin’s op-ed in the July 10 Sunday New York Times entitled “The Good Short Life.”

Dudley Clendenin with his bow tie

Seems that Mr. Clendenin have a few things in common: we’re both from Baltimore (I moved away many years ago); more to the point, we both have ALS, the onset of which for both of us was with slurred speech, and we both think consciously about how we live our lives. In his op-ed, Mr. C wisely observes that we don’t we don’t talk much in this country about how we die, and that we all should be making conscious choices about that when the time comes.

For those of us with ALS and the people who love and care for us, it’s impossible to imagine an outcome different from death. This reality diverges widely from my experience with breast cancer 18 years ago. At that time, and for some time thereafter, I was intensely aware that there was no guarantee of tomorrow. I, along with my beloved partner Susie, lived that reality for a while. Then the breast cancer diagnosis receded in time, and I got back to living for future things — like retirement, or that far-off trip to India.

Now, because of ALS, I am again faced with the stark reality that tomorrow is promised to no one. I’m also realizing both how hard it is to make sure my day-to-day life reflects this reality, and, at the same time, how hard it is to be constantly reminded that this is where I am.

Because of ALS, there is almost no way I will ever get to live again as if I have a lot time in front of me. And, however much I want to take advantage of today, my ability to do that will become more and more limited as my illnesses progresses.

I don’t want to die. But I will sooner than I would have thought less than a year ago. Mr. C., confronting the same reality, has decided to take control of his future by ending his life before his ALS becomes so advanced that his daughter will remember him horribly debilitated, or that he can’t tie his bow tie or walk his dog.

In the meantime, he enjoyed a couple of wakes for himself that he got to attend. There’s a celebration of me being planned for this September by folks here who know my work, and the one thing I’m insisting on is that it is not a funeral. There will be plenty of time for that — and for me to help plan it, for that matter, but I won’t be there.

I’m pretty sure I will not want to end my life because I can’t tie my shoes. There are always slip-ons, after all. But I also know that, as my ALS progresses, I want to be able to make conscious choices about what I am willing to tolerate in terms of interventions and daily life. To do that, I need to keep focusing on what I value in life (love, music, words, time with people I care about, activities of the mind, pursuit of spiritual connection), and how much of what I value can be achieved or obtained when there is so much my body will not be able to do.

I want to cherish this time when I can do so much – and do as much as I can — even as I recognize how much more limited my abilities already are. And I want keep my eyes wide open to what the future holds, realizing that I am essentially an optimist in how I approach life. This means that, even as my physical capabilities wane, I will look for and try to embrace the positive aspects in what remains available to me.

I think we respond to devastating health news from our essential beings. A fatal illness does not change who we are. Mr. C appears, from his column, to have an essential need to control the length of his ALS-compromised fate. By contrast, I think that I have an essential need to take the greatest advantage of the opportunities left in mine, though I recognize, as Mr. C does, that my need has implications for the lives of the people who care for me. Given who I essentially am, and who Mr. Clendenin appears to be from his column, I suspect he will die before I do, if that turns out to be in the control of either of us. I hope he dies as happily as he can, given that he has to go before he would want to if things were different. I hope the same for me when my time comes.

On a happier note, it seems another thing that Mr. C. and I share is a love of Leonard Cohen. Like Mr., C, I hope for what Leonard Cohen writes about in his poem/song “Dance Me to the End of Love:”

Dance me to your beauty

with a burning violin

Dance me through the panic

till I’m safely gathered in

Lift me like an olive branch

and be my homeward dove

Dance me to the end of love

For more about me and my life these days, see the profile of me published recently in USA Today, and listen to the podcast of my perspective on KQED about voice and communication.

 

© Barbara A. Brenner  2011

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19 Responses to Thoughts on Dying and Living

  1. Amy Pett says:

    Oh, Barbara, this post is just beautiful, and so exactly you. When I read Clendenin’s piece, I wondered what you thought of it, and how you were thinking about these things. But I remembered that you had said you didn’t want to talk about your death, so I restrained myself. I’m so glad you shared your thoughts with us, and in your own good time.
    It is so inspiring and spiritually uplifting to see you bringing your generosity, powerful intelligence, endless curiosity, and very large heart to this journey of yours. Thank you again.
    I’m sending you lots of love.
    Amy

  2. Peggy Orenstein says:

    Barbara, I read that piece and was hoping to hear your perspective on it. I found Mr. C’s piece beautiful and fearless. I find your post beautiful and fearless. Both push me to think more deeply about my own life, about who I am, about how to face challenge with personal integrity, about the ways that a crisis that makes those questions so urgent and crystalline–as with a breast cancer diagnosis–can recede and yet return in an eye blink (or a slurred word). I’m so grateful that you are writing this blog.

  3. margie gelb says:

    Thank you for that last column. So few people, when they talk about death, talk about life. And it’s all about how you live. You express it so well. I’m going back to listen to Leonard.
    Love,
    Margie

  4. Jan says:

    This is so moving, Barbara. Thank you so much.

  5. Mary Whitehead says:

    Wish I had known you longer – for your wisdom, your spirit, and your courage. May I say now that I shall always remember you well, and I know that you have made great things happen. Thank you for being YOU – such a valuable creature on this earth. And may I speak for the (literal) thousands whom you have helped. PEACE.

  6. helen Jacobs says:

    So timely. A dear friend, who had a neuro-muscular condition similar to ALS – and who suffered with it for 20 years – died yesterday morning. She was very conscious about the kinds of limitations she was willing to deal with, and those she was not willing to deal with. For th past few months she has been confined to either a wheelchair or to her bed. I’m sorry i don’t get a chance to read this piece to her, she would have loved it.

  7. Nurit says:

    I feel myself thanking those wonks for their geek activities if only because their programs do let you speak still – and you speak so eloquently, so movingly, so very affectingly. For one with a Kate voice, you reverberate.

  8. Jo Ann madigan says:

    Can’t say it better than those who’ve preceded me but have to say thanks. I am blessed to have you and your astounding heart and soul in my life. I miss you and I too love Leonard. Jo Ann

  9. Susan Liroff says:

    Lost another friend last week. Your writing helped. Sadness remains. The reminder that sooner or later, (preferably the latter) we all must face the end of this life is constant. So remembering to cherish each day, not kicking myself to hard when I’ve wasted time (yes there is such a thing, I believe) all these things come to mind when reading your words. Remembering that we have choices how we respond to catastrophe… Why you? Why me? Why bother to think like that… switch gears… make different choices in our thinking…. that’s what you inspire. How very refreshing to give voice to the dilemmas and ponderings…. Thank you so much for it all. Love you both so much…. -susan

  10. Ben Harris says:

    Barbara,
    I was diagnosed with ALS in January, I love Leonard Cohen but I think the most beautiful song ever written is “Into My Arms” by Nick Cave. Anywho, a funny thing happened to me on the way to the grave. I enrolled in the phase 2 clinical trial for NP001. Lets just say that I’m going to postpone gravestone shopping for a little while.
    Cheers,
    Ben aka HappyPhysicist

  11. nora graham says:

    Hi dear!
    Great article Barbara.
    Today I am 84.
    I may have less time than you!
    No one in my family was long-lived (except my sister — but she and I were born on different planets–) so I never expected a long life. I think when you’re not expecting
    foreverness anymore, it’s OK — if you have led fulfilling years, and with a partner to share them with. (Mine are both gone-) I have no more grand expectations but am content with my time each day. I am happy for you that you have Susie beside you,
    so loneliness is not in the picture.
    Keep on writing, and cheering the rest of us up!..
    Lots of love – Nora

  12. Tori Freeman says:

    I loved watching you play piano and seeing your beautiful smile. I miss seeing that beautiful smile at Breast Cancer Action board meetings. You are so amazing and this is so cool:

    “Researchers at the University of Delaware are using old recordings of Brenner’s voice — taken from radio and TV interviews — to reconstruct a voice that sounds more like hers.”

    Wow. Thank you, always for your wisdom and insight and for sharing your spiritual journey with all of us.

    Sending love and hugs, always, Tori

  13. Mary Isham says:

    Dear Barbara
    First, I want you to know that you have been a hero of mine for some time, largely for your amazing efforts in responding to the breast cancer epidemic and taking on the medical/pharmeceutical industries. Second, when I saw someone else was at the helm of Breast Cancer Action, I assumed you may have had a recurrence.
    Then I received you blog. I was immediately thrown into a deep sense of injustice and anger. After pausing, I was able to see that you are continuing modeling how to meet insurmountable challenges, touching so many people, breaking the isolation , inviting the exploration no matter what lies in the future. I believe, the only way one fully understands what it entails to deal with a progressive life-threatening illness, one must have the direct experience. Your expanding beyond the cultural/medical boundaries into the unknown certainly helps me. I just want to thank you for being you, no matter what. Love to you, Mary

  14. Denise Martini says:

    I am so touched by who you are Barbara; how you speak, and write, and how you share the gift that you are with all of us. Thank you. I find it hard to put into words and do justice to how I am moved by you and your life, but maybe by trying I’ll get better at it! I have deep admiration for your ability and choice to consciously live, and on all levels. And to see you in your abundance, playing your music, with your love Susie, on USA Today and KQED, and on and on…WOW! And I love Leonard Cohen too, and have danced to that song many of times. I look forward to all the life yet to be lived by you and with you. Much love, Denise

  15. What a thoughtful and eloquent post, Barbara. Reminded me of many conversations with my brother Cedric, who died in Dec 2004 after living in our home about 6 yrs. There are so many different ways to think about dying, and having the kinds of conversations with our loved ones that you so gently encourage is so important. It is hard to think about death when terminal illness is not on the horizon, but anyone of us could die instantly in an accident, and if we can think of those conversations as other than “morbid downers” to be avoided, we might find value in exploring our ideas about death and dying out loud.

    One of the reasons that I love hospice care is that it helps family and friends to have these conversations, and not just about/with the person who was dying. xox

  16. Susan Pelletier says:

    Thank you Barbara for continuing to voice your thoughts and your wonderful insight about the cycle of life. You have touched me and help me change my life through advocacy and I can never express my thanks enough. I have been able to take my anger from getting breast cancer and channel that energy into having a voice on the many research panels I have served on. You gave me my start and I think of you everytime I do advocacy work.
    Love, Susan

  17. Jenny White says:

    Hi Barbara, You are so honest and clear about what’s going on. I’m so glad your voice isn’t silenced! I wondered what you thought about the Ring Cycle when I saw you at Gotterdamerung; it was so noisy and you weren’t really able to respond. I was thinking, O god, he’s such an anti-Semite and here I am blathering on about how great the music is, how great the soprano is, I wonder what Barbara thinks…! Then I ran into Susie at Rainbow, who said you both saw the contradictions but were still able to appreciate the music. From reading the USA Today (really?! USA Today, whaddya know…) article, I see that you love music. Isn’t it fabulous, music… And there’s so much of it, in so many genres… Have you discovered Dore Stein, on KALW on Saturday nights? He explores wonderful music from around the world. I’m blathering on, but I wanted to write and say hi and thank you for being a great person in so many ways. All the best, Jenny White

  18. Amy Allina says:

    hi Barbara, interesting to read your reactions to the Clendenin column. clearly I’m not the only one of your friends who wondered what you thought about it when I first read it. but I may be the only one of your friends who knows both Dudley and you. (he was the instructor of a writing class I took just over a year ago.)

    I feel very fortunate to have had the opportunity to learn from both of you. you both have influenced my thinking significantly on this topic as well as many, many others.

    best,
    Amy

  19. Ellen Shapiro says:

    “And we are put on earth a little space/That we may learn to bear the beams of love.” William Blake. While I hate that you have ALS, your reflections on it, on your life in particular, and on life in general open my eyes and my heart, and I thank you for that. At the very least, Barbara, know that your work and your way in the world make life better for all the rest of us. You’re a rare bird, indeed.

    20 years ago, would you have thought for a second that USA Today would do a kind and respectful feature on you?! Just goes to show you – hope can spring from the strangest places. Any chance you can get taxes raised in the next few days?

    Much love to you and Susie from Meriel and me.

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