The Dance

Dance has made its way back into the collective culture through television shows like “So You Think You Can Dance,” and through video games like “Dance, Dance Revolution.” But for me these images of dance only capture the physical act. There is a spiritual side to dance that I was reminded of on a rainy Tuesday in Bangkok. Ev and I decided to access one of the mystical portals of the world at the Erawan Shrine, a place where people from all over Asia make pilgrimage to offer prayers for blessings, for forgiveness, for things that they think they want. And we were there, meeting a friend from another time, Khun Nong, whose friendship spanned many lives and years. Nong had come to help us hire the shrine dancers to dance a blessing on the many that we know are negotiating their new normal of dis ease. And this included us as well.

I should explain a little about this shrine. The actual statue is of four faces of Brahma, each facing a different direction–north, south, east and west. It is located outside the Amarin shopping complex and the Grand Hyatt Erawan Hotel on one of the busiest corners in Bangkok, an area now known for its blatant materialism. The shrine itself was built to try to right the bad kharma that accompanied the building of the first Erawan Hotel in the late 1950’s. For some reason, the developers ignored everything every Thai knows about how building a new building dislocates the local spirits of the place. Thais know that it is important to determine the most auspicious time for breaking the ground and finishing up these new buildings, and they expect to furnish a new home–some type of shrine–to which gifts can be brought to keep the original spirits of the place happy. The Erawan Shrine was built because at the time, workers were getting injured, and accidents were happening in a way that could not be chalked up to just careless coincidence. A shrine built under such circumstance will take on a power beyond any Grand Hyatt Hotel, capitalism, or dis ease. It attracts rich and poor, the powerful and the dispossessed, men, women and children. There is an omnipresent cloud of incense, and the sounds of traffic do not obscure its blessings. Even if people cannot take the time to stop and pray, they still find a way to make merit. We have seen people drive by, drop their hands from a motorcycle or car steering wheel, place them together, and lift them to their foreheads to offer a hasty wai of respect to the holiness of this place. Of course, the fact that they do this while in vehicular motion only increases it’s mystery.

Honestly, I don’t presume to understand the way all things work. From my Western frame of reference, it would be easy to dismiss religious beliefs as superstition, especially those of another people at a shrine in the middle of a huge Asian city. I know that I believe in the science of science, but I also recognize the presence of God, the power of beauty, the hidden planes of energy that move in and through us, and the peculiar hold that Ev has over me when she cocks her head just so and tells me she loves me. Go ahead and boil any of that down to the physiological soup of neural connections and hormonal chemicals, and I promise you, it won’t mean anything except soup. I just know that there are places in this world that are holy beyond our simple perceptions, and in spite of all the noise and commerce around it, the Erawan Shrine is one of those places.

It isn’t that the central feature of the shrine is the four faces of Brahma. It is that you are brought to the realization that each small step in life has multiple perspectives, and that its meaning comes not from the face you see but the ground from which you perceive and the direction you face.

At the Erawan Shrine, you can hire between two and eight Thai classical dancers for whatever blessing you desire. You then sit in front of the dancers, facing the shrine while they dance behind you. The music is live, the dancers are beautifully skilled, incense burns fragrant, and the numerous offerings given around the shrine make the experience uniquely powerful. The fact that you have hired eight dancers to dance a blessing on your own dis ease is not the point. It is that you are given the gift of sight and sound to realize that in the dance itself, is your own dis ease’s blessing, and that by calling forth that blessing, you can dance too, even when your legs won’t move.

Here is the blessing I received. Dear friends, former colleagues from another time, now helped us to find solace, multiple perspectives, and beautiful dance. A garland, a bunch of incense, and a small candle, a prayer of hope, and the acknowledgement that there is so much more to this world than our little dis ease were just the outward trappings of the visit. What meant more to us was that Nong met us at the shrine, that our dear friends Oie, Hui, Usa, Sue encouraged us to make our own mini-pilgrimage in a pink taxi through Bangkok traffic on a rainy July afternoon. Ultimately, the joy of old friends being together, of eating favorite foods and remembering good times, the sharing of families that are growing up and out of our reach, these were the blessings that came through the dance of friendship, of life, and of love.

I have written before about the rhythm of dis ease. That rhythm begets a life-dance that we are all given. For some of us, it is a whirling dervish, for others it is an elegant ballet. Still others may see it as a two-step. I have been privileged to witness dances from many cultures, each with its own meaning and blessing. In dance is life, and no matter how many times we repeat the patterns, each dance is a unique event, acquiring new meanings each time we put them together in the back and forth sway of life movement. Just as the dancers at the Erawan Shrine may do the same dance each time, they dance for different blessings based upon the personal needs that caused the devotee to hire the dance in the first place.

So, here on a rainy, Bangkok afternoon, sitting in front of a dance older than all of our ages put together, grace ascended. For two minutes of Thai classical dance by eight trained artists, accompanied by instruments emulating the natural sounds of the alluvial plain of Thailand, a blessing beyond the power of any one human being was lifted into the ethers.

And for a minute, I believed that I could dance—not like a video game, but definitely a dance, dance revolution.

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.

The Elephant in the Room

Whenever there is something that we don’t acknowledge, or that we cannot figure out, we say, “that is the elephant that is in the room.” The idea is that everyone knows the elephant is there, because it is so big, no one can miss it. But there is also an acknowledgement of denial when we talk about the elephant in the room, and that denial can be seen with the onset and body regression of dis ease. So it is ironic that Ev and I are on the island of Bali, with literally 30 elephants outside our door. And while I don’t want to write about thirty elephants, I do think I would like to acknowledge a couple that Bali has brought back to me in ways that I cannot deny any longer.

The first is that dis ease has its own rhythms. Those rhythms are sometimes hard to discern, but when looking back, you can tell that they have played themselves out in a way that cannot be ignored. Here is an example that comes with ALS. For a lot of us PALS, falling is one of our first symptoms. If I am honest with myself, I can point to my first real fall as taking place one year ago, here on Bali. I put my left foot up on a step and then did not have the strength to raise myself up. We had been walking for hours, and when I fell, I actually broke a bottle of beer in a plastic bag I was carrying, just barely missing cutting myself badly. I jotted it down to clumsiness, but kept the skinned shin for over two months as a reminder. This week, one year later, I fell the very same way, only with my right leg. I have learned to lead steps with my “good leg” since my left is so weak, but we had been walking what was for me a lot, maybe a couple of blocks, and there it was. Luckily I had nothing in my hand except for a cane, and even this went clattering as my leg collapsed. So what is the rhythm?

It is hard to explain this, except that I found myself reflecting on the marvel of symmetry as my legs continue to go away. All life moves to these rhythms, and our belief that we can control them is just another elephant in the room. I actually try to deny them by forgetting that they happened, or chalking them up to other things. But there is no denying the old-man, shuffle-totter of a walk that I now perform, a walk that is well beyond my 55 years. And it is Bali where I fell first with the left, then with the right.

Another elephant for me about dis ease is that dis ease managment is so focused on the unmanageable. I feel so lucky to be working with an ALS Clinic, especially when I compare notes with friends who have cancer. For them, their dis ease management is doctor to doctor, symptom to symptom. At least ALS Clinics have gotten this part correct–what affects part of me, affects all of me. If my spirit is affected, my body cannot be far behind. And this is really tough for people in the curing business. If you cannot cure it, then you have to balance how information is shared with the spiritual strength that a person brings to their particular moment of dis ease. Imagine trying to do that doctor by doctor.

But even with the coordinated efforts of a clinic, it is hard. We see each other every three months, and a lot can happen in that time. As desirable as it is to stay ahead of the symptoms (and believe me that is very desirable), it is often a game of catch up if you haven’t seen each other for a quarter of a year. And with a dis ease like ALS, the body regression can take on other meanings–in three months a person can go from talking to not talking, breathing well, to requiring breathing assistance. Such developments are open to interpretation by both the person with dis ease and the families, friends and professionals around it. Is the person not talking to conserve energy, or is it something else? Should I lie awake at night and worry about his breathing rhythm, or is it something else? This is hard on caregivers, and it is hard on PALS. Dis ease management is about barely managing, and at some point, you don’t. That is a hard elephant to look in the eye, and yet it sits in the room whenever you are talking about ALS. “Son, this elephant says you are going to die.”

So then, what I have figured out with all of this is that it is far better to name the elephants. They exist! I actually got to ride a couple in the past two weeks. You might as well go ahead and do it, because they are too big to ignore, and too present to deny. Each one of us has our own elephants that plop down in our own little corners of this heaven on earth. I know that now. The physical ones are the most immediate, but denial could be psychological, social, emotional, spiritual or any combination of these. My worst denial is that I am changing, and as I change, I have to change to keep up. My old normal always gave me the rhythm of life to make adjustments. Now I have the rhythm of dis ease, specifically ALS, and I have to work really hard to keep up to its steady beat, even though I cannot even tap one of my toes.

On the other hand, at this place we were staying, they call you and say, “Your elephant will be there to pick you up in a few minutes,” and then you climb onto the back of the elephant, and you make your way to dinner.

That is denial I can live with.