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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The Impostor Version 2.0

You probably noticed that this entry is called “The Imposter 2.0.” “Version One” was just a little too raw to share with the world. I was afraid that if you read it, you’d call my building and have them lock the doors to the 28th floor balconies outside our apartment. I don’t know what it was, but by last Sunday I was working on a major meltdown. Probably, I was over-tired, and ALS is not something you tough through with a little more caffeine. When I need rest, I need rest. I also was hyper-aware that the next day I’d be traipsing down to Mayo. When it comes to anticipating a visit to the Mayo Clinic, you would think that this would not bring on anxiety. The folks at the clinic are so warm, so supportive, so competent. But each quarterly visit is not just a time with great professionals. It is also a measurement of what is lost and what remains, and I don’t look forward to documenting my losses. So I wrote “The Imposter Version One” in a very tired state and anxious about the coming day. Why call it “The Imposter?” I think it was because no matter how hard I tried, I just couldn’t muster the grace or live-in-the-now mind frame that I have advocated over the past year of this dis ease journey. And I felt like a fake, a fraud, a ridiculous parody of some overly sappy life lessons now learned—in short, an impostor.

I first learned of impostor syndrome in my early days as an assistant professor when I was given an article penned by my esteemed colleague Stephen Brookfield. It was a piece of his on adult learning–I don’t remember the exact topic–but I do remember his discussion of the idea of imposter syndrome. Basically, imposter syndrome is a phenomenon of adulthood. As adults, we are expected to be competent, yet through the course of our normal lifetime, through our careers, our families, the social events that we attend, and especially in our introduction to new situations, we are sure to be put into circumstances that are quite unfamiliar. And because we are adults, we know how woefully unprepared we are for these new settings! Overlaid upon the anxiety of not knowing what to do is the realization that we are actually expected to know what to do, because well, we are adults. This leads us to feel like we are imposters, dressed in a paper costume meant to project competence but thinly disguising the feelings of incompetence that we hold. And we worry that others will find out just how incompetent we really are.

I think about that article often. Imposter syndrome sums up numerous occasions from my past, and it helps me to name the fears that I hold for such anticipated situations where I’m not sure I’ll have the requisite skills. And while naming something is not solving it, it does at the very least take away the power ignorance holds when such times present themselves. With a name for the fear, I can acknowledge when I feel like an imposter as I move into new spaces, and with that acknowledgment, find the courage to share the burdens of the moment with others who occupy the same. My experience is that many others feel the same way that I do, that I am not alone in my own little imposter syndrome. I have learned to recognize coping strategies, both functional and dysfunctional, and while acknowledging one’s limited sphere of control and lack of experience is healthy, I have also seen people totally overwhelmed by their own feelings of fraudulence. The consequences are serious–self-medication, avoidance, repetition of the same situation in a different context, bad marriages, bad relationships, bad commitments–I’ve witnessed all of these dysfunctional attempts to remove the feelings of being an impostor. So last week in an effort to move beyond impostor syndrome, I recognized my own fakery and wrote it.

I thought that by acknowledging my own dis eased imposter syndrome, I would be able to find an appropriate and healthy outlet for my anxiety. And it helped, but not quite in a way that I would want you to read.

As I wrote I kept waiting for the imposter feeling to stabilize, to allow me the space where I have things figured out, mostly. But on that day, the space was not to be found. And I realize now, that expecting to be in the moment one hundred percent of the time is unrealistic. That just isn’t how ALS works. My ALS brother, Dudley Clendenin, calls ALS “Lou,” and if I were to do the same, I would believe that Lou has a death wish. He doesn’t seem to know that if we keep going down this road, it ends as all parasitic relationships end, with the death of the host. But Lou is no imposter. And he is no friend. He doesn’t really seem to care that this road, with its multiple alleys and corners and long, scary corridors that seem to lead to less and less function, more and more fatigue, and certitude about endings that no one seems to want to acknowledge excepting vagaries of the final cadence, is a one-way street. And finding the space to handle this overwhelming reality was suddenly an exercise in futility.

Oh, and what I wrote, made Ev cry.

This week, I stumbled on the little song, “I never thought I’d live to be a million,” by the orchestrated, neo-aged, 60’s rock band The Moody Blues. I admit, I always thought I would live a life where I was in control of the physical body that I was given. I thought I’d be active, in-shape, highly functional, right up to the day when, because there was just no more left in the coffers, I’d die racing semis on I 94 riding a titanium frame bike in my early 90’s. Such romanticism has no place in a reality constructed around dis ease. “I never thought I’d get to be a million, I never thought I’d get to be the thing that all these other children see, Look at me…”

So I melted down, and that is the way it had to be. I just couldn’t handle the impostor that I was. There was no grace, no quiet breath, no sense of the moment, only despair and the crap that makes the progress of ALS so very, very hard to take. And I wrote it, and Ev cried, and I decided not to put it up on the blog, and I cried, and then, I decided to quit, and with that, I’ll share a bit of what I wrote:

OK, I’m going to do that thing now that has worked for me in the past. I’m going to take a deep breath, exhale and acknowledge that indeed, this is a learning situation, and I cannot be expected to come to it with anything except my impostor identity and a tiny kernel of hope that I might discern the skills necessary to meet it and consequently, to put those feelings of being an impostor aside. I’m going to remember that with each loss is a gain. I’m going to see the gifts again, and I’m going to accept it all for what it is–just life as it goes. There are no impostors, just people doing the best they can, and in the end, all of us will find ourselves inadequate to the challenge.

The truth is if you aren’t pushed to your limits by all this living, you are probably unconscious. I still look up and wonder how things got to be this way. I don’t know, but if I just focus on the things that really matter–the love of my true love, the joy of my sons, the wonder of the women with whom they have hitched their lives, the friends who give me a hug and a smile, the naughtiness of my blue kitten–there, there is the thing I was looking for–back to the center. Breathe. Sing. Feel. And it is better.

So long Lou, you big impostor!

Dudley, David and Me

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.