7-11-11: Living with Integrity

July 11, 2011 at 8:40 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 also speak with Lora Clawson, a nurse-practitioner who works with Dudley at Johns Hopkins’s ALS Clinic. She’s also an assistant professor of neurology at the Johns Hopkins School of Medicine.

Dudley describes how the medical community could be helpful to him:  “I want to know what’s coming for me, meaning, where I am on the curve.  I also like to know what they have to offer.”

Dudley stopped taking the one drug that’s offered to ALS patients, called Rilutek, because of its high cost, and the fact that it might only lengthen his life by a few months. But he does attend monthly meetings of the support group at the Hopkins’s ALS clinic.  “They had a table full of aids, some wonderful mechanical things… it’s good to know there’s someone to help me open doors or carry things, a keyboard that’s good for clumsy fingers–things like that.”

Tom asks Lora what the first conversation is like when she’s speaking with a patient who has ALS.  “I try to help them understand the disease, try to help them understand there’s no cure for the disease, but there are treatments and interventions to make a patient’s quality of life a little easier to deal with.  There’s also a terminal nature to the disease, and I need them to be aware of that, and we also talk about advanced directives, power of attorney for health care–making decisions about how they want their health care implemented.”

Lora says the long-term decision of whether to have a tracheotomy is a very difficult one, but one that she need patients to think about pretty early on.  “I’m very honest with my patients. I’ve worked with this disease a long time.  I’m not going to tell them stories.  I’m going to be very honest with what the near future holds for them, and how we can help prepare them for those decisions they need to make.”

Dudley has had to consider these decisions–and he says the choices he’s made throughout life have affected how he’s making this one.  “As a person, I’ve always tried to live my life with integrity, in work and my own time, especially during the last 22 years, the time I’ve been sober and the time I’ve been out as a gay person–which actually matters more than some people might think.  If you have a piece of yourself that the culture says you cannot accept because the culture doesn’t, then it denies you the right to be yourself in a natural, normal way. ”

He says that going through the process of claiming a piece of your identity is a character-building process.  “And once you do it, once you make the decision to live as yourself by the standards and values that seem right, you don’t want to relinquish it.  I want to die with integrity, the same way that I try to live.  And that, to me, means not being taken captive by a disease that gradually steals from me everything I love about life, and leaves me powerless to do anything but diminish while I watch my family and friends look at me with sad eyes.  That’s a period I’d rather give up.  I would much rather exit cheerfully, lovingly, before that.”

You can listen to all of our conversations with Dudley Clendinen at this link.  You can also read an op-ed by Dudley that was published in this past weekend’s New York Times–it’s called “A Good Short Life with ALS.”

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

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1 Comment Add your own

  • 1. Amy  |  July 12, 2011 at 4:25 pm

    My husband was diagnosed in March with ALS. I notice that within your writings you, contradict yourself on length of expected life span, that there are no cures or ways to reverse this disease, how you aren’t going to live and torture your family with the responsibilities of keeping you alive…..

    I, on the other hand, researched and found people that have had spontaneous remission, have lived 10, 15 and even 20 years with ALS, some that have even began to reverse the effects. Not a lot, but there are some and if it is true for one it’s possible for all
    I’ve not found a magic pill yet, which seems to be the only thing that counts in western medicine but to negate the mind/body health options seems shockingly irresponsible for a writer who understands that his words will carry weight.
    Hypnosis seems to be a great option as we have found some success already in slowing the fasciculations, sleeping more soundly, feeling more energized,….Quality of Life.

    Now, I am SHOCKED to say that I’ve had more than one doctor say to me- Well, that won’t cure anything….it will only improve the quality of life. WHAT????
    Isn’t that the POINT to life?

    What we DO know is that medical doctors admit repeatedly- they don’t know ANYTHING about ALS! They don’t know how it starts or why or how to treat it On the other hand- those who feel that this disease could have an emotional element to it, seem to have evidence that they HAVE made improvements with ALS patients.

    Why oh why do we keep discounting THOSE people who seem to be focused on living and listening to those who are only talking about dying?

    Reply

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