On July 12th, Ev and I got on a Thai Air flight from Denpasar, Bali to Bangkok, picked up a copy of the International Herald Tribune, and devoured it for the news since we had been pretty out of touch for the past week. I finally turned to the opinion page, and there under the title, “The Good Short Life,” was a well-written piece by Dudley Clendinen, former reporter for The New York Times. Dudley Clendinen has ALS.
Diagnosed one month before me, Mr. Clendinen has a particularly aggressive form of what he calls “Lou” (after Lou Gehrig, who died of the disease when he was 38) that started in his face and has progressed to the point where his speech is affected. And he has decided to kill himself before Lou progresses beyond a point where he cannot actually physically do the deed for himself. At least that is what he says he will do, because he has determined that the cost/benefit ratio of staying alive on a vent, with the need for 24 hour monitoring, using a PEG to be fed, and unable to be anything but “a conscious but motionless, mute, withered, incontinent mummy of my former self” is not worth it. Mr. Clendinen certainly voices the fears that all of us PALS have. This is a cruel dis ease, and none of us relishes the disabled future it holds for us.
I unequivocally support Mr. Clendinen’s right to determine the path that he will take, but I want you to understand that in the Kübler-Ross five stages of grief, he has really accessed my angry place. What Mr. Clendinen has done is “make sense” to the temporarily able bodied (TABS) community about how we ought to do debilitating, chronic disease. His writing reaches out to an able bodied readership in a way that is easily accepted, without real question, as extremely sensible. I appreciate this soft-spoken, Southern gentleman for raising the questions of how we die, and if you get a chance to listen to his podcasts, you will find his manner and thinking quite compelling. But I am concerned about how the message is processed. For in the end, if you are able bodied this makes great copy, because you can certainly understand why you would not want to live as an incontinent, withered mummy. By the way, incontinence is one of the few symptoms that does not come with ALS.
If you don’t believe me that he has struck a chord with influential temporarily able bodied persons, I only need to cite David Brooks, who picked up on Clendinen’s article a few days later. In a piece called “Death and Budgets,” Mr. Brooks cites Mr. Clendinen’s “splendid article” this way:
Clendinen’s article is worth reading for the way he defines what life is. Life is not just breathing and existing as a self-enclosed skin bag. It’s doing the activities with others you were put on earth to do.
But it’s also valuable as a backdrop to the current budget mess. This fiscal crisis is about many things, but one of them is our inability to face death — our willingness to spend our nation into bankruptcy to extend life for a few more sickly months.
Spoken with the arrogance and assuredness of a TAB, Mr. Brooks’ makes incredible claims about the failure of medical research. For those of you who have a family member who has survived breast cancer, a friend or lover who has been able to manage AIDS, or for each of us that has avoided hepatitis with the development of both HepA and HepB vaccines, you will find Brooks’ assertions remarkably myopic. Rather than questioning an economy and health care system that can easily generate a cure for erectile dysfunction, but cannot get its head around massive neurological breakdowns, Brooks places the blame for our overpriced healthcare on giving grandma two more weeks of ICU. But he isn’t without some compassion, stating, “Obviously, we are never going to cut off Alzheimer’s patients and leave them out on a hillside.” Well thank you Mr. Brooks.
Warning–I told you this is my angry place.
I’m sorry, but I refuse to take responsibility for the oversized cost of health care because I wish to meaningfully manage my dis ease for as long as I can. Just because Dudley Clendinen has written with bravado about his own choice, don’t start looking to the rest of us to follow suit in some misguided attempt to save society the trouble of taking care of us. Piss off on that one! Managing Lou is expensive, but not managing Lou is immoral. Mr. Clendinen could actually use his dis ease to help our understanding. He qualifies for a drug trial, something for which it is difficult to find enough qualified participants. And his daughter may respect and value his choice, but what about her choices? What does the loss of a father mean to her?
Mr. Clendinen has overcome so much in his life. He is a twelve-stepper, a man who admits that being gay required years of therapy to learn to love himself as he should. He reveals that his thirty year old daughter’s ability to understand his choice is his one regret, and he wistfully hopes she will comprehend his need for a good death. And Lou is one more cognitive and emotional dissonance that is outside the life he pictured he would live. I don’t begrudge him his choices, but I now read these stories from a place that understands how easy it is to give up, to stop, and to just say the hell with it. And that place is an open sore if you start interpreting the choice to keep on keeping on in spite of enormous disability, with able bodied empathy, because TABism won’t get it. Sorry, it is that simple, you don’t know what the choices are until you face them yourself.
Mr. Clendinen’s bravery is apparent, but I would argue that bravery goes beyond the desire for a good death. It is trying to live a good life when your old version of life has been kicked in the teeth, when you can look ahead to less and less physical function but you know that you have more and more to give, when your one true love tries to answer questions for a research study, but ultimately refuses because the questionnaire is called the “Caregiver Burden Inventory,” and dammit, “You are not a burden!” It is plotting and scheming on precisely how to leave this world a little better place in spite of the concentrated human condition of dis ease that for some reason humans don’t believe will happen to them. And that is my message to Mr. Brooks and my clarification of Mr. Clendinen. You get dealt a hand. What are you going to do with it, in spite of the fact that you are going to die differently than you had pictured for yourself?
So let me tell you what I think a good death is. Above all, it is predicated on a good life, one where we take the opportunities given us to make the way a little better for others. It is looking for those opportunities in every day we are given. It is understanding that a good life is easy when everything seems like its going your way, but the proof of goodness comes under the most adverse conditions, when the deck is stacked against you, when the most mundane of behaviors might require a day’s worth of energy. It is knowing that you have squeezed every bit out of life, mixed it up and given it back in love and care for the humans with whom we share this little bit of the great beautiful life-consciousness that we will never truly understand.
It is not offing yourself with the thanks of a grateful nation.
OK, I’m better now. Thanks for that.
I admit that a lot of the reason that I started writing my dis ease was because I hoped I might find a way to connect my new normal to your current normal, dearest reader, a normal that I have blithely referred to as my old normal. And I thought I might be able to peel away some of the mystery as I experienced it, and you could wrap your head around the fleeting gift of your own life in a way that would help you to appreciate it and not fear the darkness that dis ease invariably inspires. I hoped I could offer you a way to predict the inevitable. I thought that if you could do that, then you would find your own way into your own life and death that left you not so much satisfied, as accepting the fact that we each must come to our own mortality our own way.
I hoped that you could see the need for imagination and consciousness beyond what you currently know, and you would say, “Dis ease is my next opportunity to make this world a better place.”
In the end, I guess I hope that we can see that this thing called living requires more than just doing it. It requires enormous spiritual space so that Dudley Clendinen can have his good death, Bruce Kramer can have his good life, and all of us can understand that the difference is only a fraction of a fraction of the great unknown. Ultimately, it isn’t about Mr. Clendinen or me, and I can assure you that it isn’t about the actuarial calculations of David Brooks on a sunny day in his New York Times column. It is about whether you used your life gift to hug your kids, kiss your true loves, and bring a little beauty into the voices of night and day. It is about choices, but the choices are far more beautiful than whether we should manage chronic dis ease.
Each of us has to find our own way to something greater than ourselves, and I wouldn’t trust anyone who thinks he or she knows the one way to that place. None of us has special knowledge. I don’t, Dudley Clendinen doesn’t, and believe me, David Brooks really doesn’t. And therein lies the meaning.