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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.”
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
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