Susan, Dudley, and Eric

Sometimes, the choices presented by ALS’s complexity are overwhelming. This past couple of weeks have presented this reality, and while it is not been difficult to write, it has been difficult to write in a way that might effectively communicate the complexity at hand. This is my latest attempt, and if a little bit of anger peeks through, I hope you will be forgiving and know how hard I tried.

I just finished Until I Say Goodbye by Susan Spencer – Wendel, a journalist from South Palm Beach, Florida. In 2011, she was diagnosed with ALS. She is brave, with chutzpah and bravado, and that most human of desires to remain independent, to choose her own path even as ALS paves the road ahead of her. I get this attitude. It is incredibly difficult to make space for dependence in our lives, especially when we are used to the independence that we believe defines who we are. It reminds me in some ways of journalist and fellow Person with ALS (PALS), Dudley Clendenin.

You might remember Clendenin. Diagnosed with a particularly aggressive and virulent form of ALS, he wrote “The Good Short Life,” a column first published in the New York Times detailing how in the face of “Lou” he would seize his own death. While not revealing the manner by which he would kill himself, he was very clear about his need to take responsibility for the act. He expressed the same independence that I cannot help but read in Susan Spencer – Wendel’s book.

Spencer – Wendel has decided to kill herself also, albeit in her own way. She does this through a year of “living joyfully,” rejecting all medical treatment and, if she is to be believed, any willingness to help others through participation in trials or other such things. Her manner of suicide is not a gun or hanging or overdose or the other usual suspects. Instead, she accomplishes a hastened death through extended travel to see among other things the northern lights, Budapest, her favorite beaches, and the island of Cyprus in search of her birth family (she was adopted as a baby). Sometimes, she travels with her family but mostly without, clearly in tune with her own needs to make meaningful memories before she dies.

I need you to understand that I have no problem with a person with ALS exercising as much control over their own lives as possible, even if it means hastening their own demise. Until you face ALS and own it as your own personal dis ease, I don’t see how you can judge such words and actions. Until you face ALS, agreement or disagreement is purely speculative. And therein is a seed of understanding why I have had such difficulty and anger in writing about a fellow PALS.

When Dudley Clendenin wrote about his decision to off himself, it was because he did not want to become a “conscious but motionless, mute, withered, incontinent mummy of my former self.” Aside from the fact that incontinence is not usually a side effect of ALS, Clendenin only expressed the fear that all of us with ALS secretly or not so secretly carry – that somehow we will become “locked – in,” trapped in our bodies with no way out. At that time, the columnist David Brooks seized this imagery as a shining example of how those of us who are in a permanent state of incurable illness, should realistically address our responsibility toward lowering the cost of healthcare.

Like Clendenin, Spencer – Wendel also expresses such fear, and like David Brooks, mainline journalists respond from their own able-bodied frameworks. In an Amazon.com interview with Cokie Roberts, Spencer – Wendel is asked, “Many people with your diagnosis would either crawl into a cave or go from doctor to doctor trying to survive a little longer…” She answers:

The problem with a cave is it has no windows. And the problem with knocking on umpteen doctor doors is that there is nothing behind the door…I am not giving up. I am accepting…Also a major factor is my husband. I so want him to have a chance at another life. Not saddled with the weight of an invalid wife.

Scott Simon of National Public Radio, in his Weekend Edition interview with Spencer – Wendel declares, “This book is so funny,” immediately after asking Spencer – Wendel’s husband how he is doing, receiving the following answer:

“Well – difficult. Every day I wake up, I feel sad. That’s my first emotion. And then I roll over, and I look at Susan. And I realize that she’s not allowing herself to feel that way, so I can’t – and I don’t.”

Hilarious, right?

I think my greatest disappointment is in the not so subtle ratification that a life framed in disability is so easily judged to be less then living. From an able-bodied perspective, the storyline reinforces a Temporary Able Bodied myth long on issuing a hall pass for terminal living – no responsibilities, no problem – and short on looking at the consequences of such easy assumptions. It reinforces singular focus on the person with dis ease and conveniently disregards the family, friends and colleagues also affected. It reinforces the idea that life with massive disability is life not worth living, unhappy and unfulfilling, meaningless and unengaged. As Ev says, “Spencer – Wendel and Dudley Clendenin are journalists, and by virtue of that fact anything that they publish becomes authoritative.”

They do not speak for me.

I know another story of blessings and complexity and empathy. In 2009, Eric Lowen of the folk rock duo Lowen and Navarro, participated in a New York Times perspective called “The Voices of ALS.” Listen to his words.

The hardest part for me is the pain I bring everybody. The fact that my children have to deal with it and my wife, I wish I could disappear quietly. But it doesn’t work like that. That’s the most horrible for me.

He continues:

I thought at first I was going to live every day to the fullest and not let anything stand in the way, but then I got a hangnail, then I got a stomach ache…life is pretty much the same no matter what and the thing that has helped me the most is a quote from a friend of mine. She said, “We’re all on a journey. You just have a better map.” I think that’s the way it is.

I so get this it makes me hurt.

What seems to get lost in able-bodied frameworks is the message that life goes on, that ALS can be a life sentence, not just a death sentence. And while we cannot all be poets, Eric Lowen sang ALS in such a profound way until he could not perform any more, engaging in new life even as ALS slowly eroded the old life that was his. He wrote:

And it’s beautiful how new blessings unfold in ways I could never have known,

but I’ve still got some time on my hands,

I’ve had to run, I’ve had to crawl, been rich as a king and had nothing at all,

still raisin’ hell and tearing down walls, I know where I stand, I’m learning to fall.

– Lowen and Navarro, Learning to Fall

There is a postscript to all of this. Dudley Clendenin, a man who could not see himself living with ALS, prolonged his life, even agreeing to a feeding tube. Why? I cannot be completely sure, but he was offered a book contract to tell his remarkable story. The book contract offered him the opportunity for re-engagement with humanity on terms he was able to quasi-define. He died in May of 2012 with his boots on, having sent the galleys of his new book to his publisher.

And that is the real point. We can either die while we are dying or live to the fullest. But massive disability is not the determinant. It’s learning how to fall into new blessings.

You can watch a video of “Learning to Fall” here.

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29 thoughts on “Susan, Dudley, and Eric

  1. Bruce. Every day you remind me how fortunate I am to have you in my life. When you share stories like these, my beliefs are reaffirmed. Thank-you for your distaste of ideas from both Clendenin and Spencer-Wendel. I receive incredible joy in being with you on this journey in ALS – I have gleaned incredible insight and my ability to love has flourished. We all know it isn’t easy, but what is life without support of love? It’s unconditional.

  2. Wow Bruce. I so appreciate your honesty, pure beautiful honesty. Not to mention remarkable insight. It has been my experience that many reactions to disability and terminal disease come from a place of dark fear in all of us. This could happen to me, this could happen to someone I love. How could I survive, let alone thrive? I am so grateful Bruce Kramer is a person of creative intellect who can re-imagine the world for himself and for us. Judy

  3. A meaningful and beautiful post – you are a master at teachable moments. The song and video are fabulous. Gotta learn the song.

  4. Bruce, you continue to bless us with your honesty, your humor, and just with the joy of having you among us. I pray every night for “the serenity to accept the things I cannot change”; among these are the limitations age imposes. I say this, not to imply that I have the remotest idea what you are going through, but to acknowledge that we are all headed down the same road; it’s just that you, as the man says “have a better road map”. What we all appreciate is that, with all the darkness you could so easily fall into, you have chosen the light. Thanks for the light. Mike

  5. Thank you, Beloved Bruce. Your Dis Ease Diary is one more way you give us to fall into new blessings. I am reminded that there is an eternity of able-ness awaiting, and that the temporary part is the disability of this fallen world. We’re all on different time-frames and paths and all pretty d*##* disabled. I cannot imagine going through what you are going through with the grace and direction you share, but want you to know that every insight resonates with my own heart on these subjects. To be so selfless as to be pained by the affect of ALS on Ev and your loved ones. One of my friends who died young of cancer told me that the hardest part was knowing she would not be there to comfort her two young daughters as they grieved her death. Bruce: Your very life sings out the blessings and I so love the way you choose to live. Thank you for sharing and caring about all of us (me). Still falling.
    Love,
    Jan

  6. Such powerful writing, Bruce. It makes those of us who read these carefully chosen words of yours wish they had the power to ease your dis ease. Instead, you ease our discomfort with your insight and wisdom. Thank you again for the blessings you have led us to.

  7. I wholeheartedly agree that one should not judge others unless one has walked a mile in their shoes.
    I don’t really know how it feels to live with ALS, just like others don’t know how it feels to walk with fibromyalgia/arthritis pain almost every day.
    I will therefore refrain from passing ANY judgment on Dudley Clendenin and his attitude to end his life, or Susan Spencer – Wendel who decided to spend 1 year living joyfully, or people who decide to participate, or not to participate in medical trials.
    There is the general idea that able-bodied people judge the one with a disease or a handicap, but it does not mean that people inflicted with one disease don’t judge others. As human beings, we are all judgmental on certain occasions. The point is to try not to do so, and certainly not to hurt others by harsh judgments.

  8. Bruce – you are a wonderful role model for all of us whether sick, in pain, or healthy. We appreciate your blogs so much – prayers are with you. Alice & Don

  9. Bruce, this one really spoke to me, as you described the various reactions of different individuals to the diagnosis of ALS. I think it’s good that we remain individuals in light of whatever path we end up on in life. I loved the poem and the video. All of us are learning to fall, and all of us still breathing still have “time on our hands”, and I hope we also can be open to all the blessings that come to us each day. Since the people on that video can, and you can, so can I.

  10. Bruce- People create distinctions out of their own minds and then believe them to be true. You are a great teacher with incredible wisdom and insight. You continues to give lessons to all of us and keep us inspired and being inspired gives us all some kind of magic.
    Thanks for being you. :)

  11. Eric Lowen, my husband, made a decision. He wanted to see his kids, 2 of his own and 3 stepchildren, graduate from high school. He survived 8 years after his diagnosis and almost made it, he passed away 2 months before the graduation. But he did see them all accepted to college. He showed us what it means to be a strong person, a hero, and a rock we could all cling to. We miss him everyday. It was hard seeing him losing everything, one excruciating step at a time. But the time we had with him is precious and I think he knew his bravery and resolution to live would be the memories and guidance we would all treasure. What a loss to our lives. I wish he were still here.

    • Kim,
      Eric inspired beyond your family, and there is not a day that goes by I am not strengthened by his strength and yours. I hope that in a very small way, I might pay it forward. Thank you, just…thank you.

      Bruce

  12. Dear Bruce,

    Thank you for not making the decision to remove yourself from my life so that I would not be ‘saddled with the weight of an invalid husband’. ALS will no doubt take you away much too soon as it is. We have traveled to some of the most amazing destinations on the planet, but the memories I hold most dear are the ordinary routines of life – cooking a meal together, taking a walk, sharing a glass of wine.

    Thornton Wilder captures this so beautifully in the words of Emily from OUR TOWN.

    “Good-by, Good-by, world. Good-by, Grover’s Corners… Mama and Papa. Good-by to clocks ticking… and Mama’s sunflowers. And food and coffee. And new-ironed dresses and hot baths…and sleeping and waking up. Oh, earth, you’re too wonderful for anybody to realize you.”

    I am so grateful for the privilege of sharing my father’s last few months of life. We didn’t swim with dolphins or plummet from planes together. We shared meals, and conversations and I got to hear his reminiscences for the umpteenth time. It was a sacred time, just being present with him. It’s TIME and BEING PRESENT that is important – not an exotic locale or a once-in-lifetime experience.

    Our journey since diagnosis has had difficulties, and some times of great sorrow and loss. But mostly it has been a thousand normal moments spent over meals, talking about the day, dreaming about the strong young men our sons are growing into with their lovely young women, and dreaming about eventual grandchildren.

    Thank you for the gift of your presence.

    • Thank both of you for this comment and this post. My mother was recently diagnosed with ALS and I am still working to articulate all the thoughts and feelings this disease inspires. I have instinctively avoided Spencer-Wendler’s book, although I respect that she is just trying to make the best of things in her own way. I certainly hope that she and her family are finding her choices a comfort. But for me, your example and your story have been much more helpful, so thank you. I feel much more prepared to be present and caring for my mom as much as I can be and do than to smile my way through a lot of forced fun, as I imagine her family doing. Thanks for your generosity in sharing your lives with us online.

      • Michelle, It is not lost on Ev and I that you shared your mother’s diagnosis with us on Mother’s Day. Please know our empathy for both of you.

        Blessings

  13. So glad I found your blog today. I share your commitment to accept the reality of our illness and live as fully as we can for as long as we can. And for me that also means staying connected to the family and friends who have sustained us our whole lives and are standing by to walk the journey with us.

  14. Bruce:
    Thank you for sharing your journey and demonstrating to us the importance of daily living.

  15. Bruce,
    This is incredibly insightful and meaningful. I cherish your teachings on a personal and professional level. You continue to amaze me
    Fondly
    Jennifer

  16. Bruce,
    I have been following your blog for some time now. I truly believe that you are such a blessing to so many…your writing is so amazing! Today really made an impact on me..thus the reason for my first time comment. I am learning to live better…wiser…because of you. My sister struggles with ms and so some of your writing has really helped me relate better to her as well as to appreciate and even be grateful for the path our family is on.

    Thank you for sharing your story…you continue to uplift and bless so many of us! Please know what a difference you are making!

    Pat

  17. When people are sure of what they will do in an experience they have not yet lived, it may offer a transient feeling of control but has no bearing on decisions made in each moment of the reality of such an experience. We all run various scenarios in our minds and feel prepared, but wet we simplify the images. We have no idea of the endless variations of what might happen and what we would do given the timing and details of the future that lies ahead. The journey takes many turns, and I am so glad to have you and Ev as friends along the way.

  18. Pingback: Living with ALS: The right kind of bucket list | new-bali.com

  19. I don’t quite understand the criticism of Susan. She decided that knowing she was going to die, she wanted to spend one year living in a way that when she died she had no regrets about ‘what she wished she had done”. She also took each of her children with her on trips one-on-one so each (and she) would have the memories of that special time. She created scrap books for them to have after she was gone. I think she gave a LOT of thought to her loved ones, and to living the kind of life she wants to live in the time she has left. A wonderful book full of spirit and love.

    • Thank you so much for the comment, Amy. It illustrates the hesitations I had even to write this blog. Clearly, my fears that it would be interpreted as a critique of Susan were well-founded. What I was trying to do was point out that it isn’t just what we say, for example the content of Susan’s book, it is also how it is said. My suspicion is that a lot of how Susan would have liked to have written the book was taken over by her publisher and the co-author. If you will remember, there is one point where she says that she has a certain number of chapters (I think it was 27), but it ended up being very different in the end. My point was how the book was written lends itself to ableism on the part of the reader. It is a very subtle point to make, and clearly for you I did not.

      That being said, I appreciate your comment and point of view and hope that you will grant me mine.

      All the best,

  20. Your writing is extremely moving and real. Sorry if that sounds inadequate but I have no other way to articulate the effect it has on me. It’s amazing. I’m slowly making my way through your posts and they are all as equally beautifully written and thought out. Thank you for continuing to write and for sharing what you have already written.

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