7-25-11: A Legacy Worth Attempting

July 25, 2011 at 8:00 am 1 comment

Dudley Clendinen is an award-winning author and journalist who lives here in Baltimore.  A former reporter and editorial writer for The New York Times, he found out in November, at age 66, that he has amyotrophic lateral sclerosis, or ALS, more popularly known as Lou Gehrig’s disease.

There is no known cure for ALS, and once a person is diagnosed, they usually live between 1.5 to 3 years.

Over the past few months, Dudley has been speaking with Tom Hall about living with ALS.  In this conversation, they talk about the op-ed Dudley wrote for The New York Times, in which he discusses the right to control his own exit — the right to die.

The article generated an enormous response–our own website received thousands of hits from all over the world, David Brooks referenced it in a column about the cost of health care, and Dudley received hundreds of letters–including one from a publishing house offering him a book deal.  “It’s a really big offer,” says Dudley.  “It may be the best deal a dying write has had since Ulysses S. Grant.”

Dudley says that makes several things possible that he hadn’t thought were options.  “I’ve been broke for 20 years, so the thought of actually being affluent for the last part of my life…is very appealing. I would love to pay my debts.   I have considerable debts.   It matters to me that I be able to pay them.  It would matter to [my daughter] Whitney because she wouldn’t have such a messy estate to deal with.”

Dudley says if he were to write the book, Whitney would help him as an assistant and contribute some writing to it.  “It would give me an opportunity to involve her in my death, in my passage, in a way that’s creative and positive and would leave something tangible, something that we produced together that she would be proud of.  It would be a bridge, I hope between now and later … that matters to me a lot.”

But Dudley says the opportunity to write a book also poses some difficult questions.  “If I’m going to wink out as soon as I think I might, do I actually have time to write a book?  Do I actually have the energy?  My hands are getting weaker day by day.  My breathing is getting wheezier day by day.  If I agree to do this, it’s really going to be pushing it.”

At this point, Dudley’s not sure how much longer he has to live.  Part of that will be determined by whether he consents to a tracheotomy.  “I don’t want to.  If I don’t, I might wink out this fall.  If I do, then I could prolong it.  It poses this kind of difficult personal, moral, and physical choice.  Is a book worth posing this possibility of my needing to consent to a surgery that would cut a hole in my throat to insert tubes so that I could stay alive long enough to write the book?  Which is not something I had planned to do.  The answer at this point is—maybe.”

“Also, if I commit to doing this book, it’s going to eat up my remaining good time. . . My elective time is spent in the company of friends.   I visit them; they come here.  It’s a joy.  If I commit to doing this book, it’s going to take a lot of joy out of my life on the premise that I’ll bring some satisfaction and happiness to my daughter, and some checks for my creditors, and some legacy that might be worth attempting.”

You can listen to all of our conversations with Dudley Clendinen at this link.


Entry filed under: Health, On Air. Tags: , , , .

7-25-11: Options at the End of Life 7-25-11: Trouble in the Baltimore Police Department

1 Comment Add your own

  • 1. kathryn arromand  |  August 3, 2011 at 2:15 pm

    Like Dudley Clendinen (New York Times Op-ed: The Good Short Life, July 9th), and some 30,000 others in this country, I suffer from ALS, a catastrophic and cruel disease if there ever was one. I am usually glad to see an article in the press about ALS as a corrective to the general public ignorance about the disease, yet Mr. Clendinen’s piece left me fuming. To me it expressed the passivity we are prescribed when told confidently by our doctors to go home, try to stay cheerful, and prepare to die. Why use the valuable platform of a New York Times op-ed to pitch to readers the idea that ALS is a hopeless cause?

    I’m not referring to his planned suicide. In fact, as he suggests, a difficult but weirdly empowering aspect of ALS is that we are left individually to decide at which point along the grimly foreseeable trajectory of the disease we’ve had enough, and want to check out. If we choose to let nature take its course, respiratory failure will kill us in a statistical average of 22 to 36 months. If we agree to a tracheotomy (mechanical ventilation), we may live many years, but in a much compromised state. I fully respect the decision to dispatch oneself before things get really ugly (though I myself am in it for the long haul). As Mr. Clendinen points out, being free to govern ourselves in this illness is key.

    Unfortunately, unless we are either super rich or on Medicaid, our freedom to choose to live is limited. Only a fraction of ALS patients in the US decide to undergo a tracheotomy–perhaps 15%–and a prime reason is the expense. It is perverse that someone with the usual private, employer-based health insurance would be covered if the sickness were lupus or leukemia or AIDS, but, because it’s ALS, has to forgo an intervention that could extend his life by years, or subject his family to bankruptcy.

    We need to fight for more research funding, which is woefully inadequate; for a health care system that doesn’t leave the catastrophically ill to fend for themselves; for changes in clinical trial and FDA procedures so that potential treatments for ALS don’t travel through the pipeline at a snail’s pace while drugs for obesity and erectile dysfunction whizz by; we need to lobby and advocate for ALS in the same way that breast cancer and heart disease and autism have won recognition as ‘causes’ that bring the dollars and legislation that can profoundly impact the sick and their families. The problem is that we die too quickly to be effective activists.

    It is Mr. Clendinen’s right to envision a future self as a “withered, incontinent mummy” (why, though, the repeated reference to incontinence, which is not characteristic of ALS?), but this is reckless rhetoric if it persuades readers that there can be no quality of life for people with advanced ALS. In fact, recent advances like eye-gaze technology that allows a paralyzed person to use a computer and portable, laptop-sized ventilators are complete game-changers. I know of many such people who are grateful to be alive and leading meaningful lives— writing books, enjoying family vacations, watching their grandchildren grow, devoting hours to social websites like PatientsLikeMe in order to offer invaluable practical advice and support to the newly-diagnosed.

    I am happy that Mr. Clendinen has so many wonderful friends, endless invitations, and a lovely daughter. Like him, I quickly figured out the importance of safeguarding my happiness and joyful engagement in life in the face of the mammoth and ineluctable difficulties and disappointments ALS engenders. But there is a bigger picture that cries out for attention, and I am sorry there was no room for that on the op-ed page.



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