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Living in the Layers
September 14, 2008

This is a special day on my annual calendar: September 14  was my father’s birthday – he was born 94 years ago today; he passed away 22 years ago. Today is my granddaughter Hannah’s 18th birthday – we had a service of dedication for her in this sanctuary. Today is my daughter Sue and her husband Chip’s wedding anniversary – they were married in this sanctuary 23 years ago today. 

These are a few of the important layers I’ve lived through; the building blocks of my life…from those who brought me into the world and encouraged me, to those I helped bring into the world and have tried to encourage them.

You’ve had layers in your life – people who brought you into the world and have loved love into you; who have helped you to believe in yourself; who have challenged you and encouraged you and given your life a sense of depth, a sense of meaning and purpose, a sense of accomplishment and a sense of appreciation, which is one of the deepest layers and a source of inspiration or spirituality…the basis of a faith system that doesn’t require theological proofs.

We draw sustenance from those layers – like the roots from which the plant draws the nutrition that allows it to grow.

Then there’s the litter of our lives – the discarded refuse; the piles of failures, the mess of mistakes, the bag of regrets, the broken relationships, the discarded dreams; the litter of our lives.

The sermon title comes from a poem I discovered just last spring; it’s called The Layers, by Stanley Kunitz who died two years ago at the age of 101. I quoted a brief passage from the poem in June, but here it is in its entirety. 

I have walked through many lives,
some of them my own,
and I am not who I was,
though some principle of being
abides, from which I struggle
not to stray.
When I look behind,
as I am compelled to look
before I can gather strength
to proceed on my journey,
I see the milestones dwindling
toward the horizon
and the slow fires trailing
from the abandoned camp-sites,
over which scavenger angels
wheel on heavy wings.
Oh, I have made myself a tribe
out of my true affections,
and my tribe is scattered!
How shall the heart be reconciled
to its feast of losses?
In a rising wind
the manic dust of my friends,
those who fell along the way,
bitterly stings my face.
Yet I turn, I turn,
exulting somewhat,
with my will intact to go
wherever I need to go,
and every stone on the road
precious to me.
In my darkest night,
when the moon was covered
and I roamed through wreckage,
a nimbus-clouded voice
directed me:
"Live in the layers,
not on the litter."
Though I lack the art
to decipher it,
no doubt the next chapter
in my book of transformations
is already written.
I am not done with my changes.

I am not done with my changes; and neither are you.

Two months ago today, on July 14 (my son Jonathan’s 41^st birthday) I was told by a neurologist I’ve been seeing that I have Parkinson’s disease.

The diagnosis came after several months of both wondering what this tremor was about and going through necessary tests, first by my internist, then by the neurologist.

By the day of the final diagnosis I had time to move through the initial stage of denial, though I must admit that some denial still lingers, and I appreciate it, both in the sense of understanding it and being thankful for it!

Other stages that accompany any kind of loss include guilt, anger and bargaining and hoped-for stage of acceptance.

These so-called stages of grief describe the human response to loss -- they were outlined by Elizabeth Kubler-Ross about 38 years ago in her book On Death and Dying, which I read when it was first published, and have thought about ever since because of its important relevance to the work I’ve been doing in ministry, so much of which deals with grief in all its forms.

The neurologist who is providing treatment and advice is Dr. Jeffrey Gross. When we first met and he saw on his laptop computer chart that I’m a clergy person, so he told me that he has served as president of his temple in Fairfield. 

After he told me that he was certain that it’s Parkinson’s I said:

“So, Dr. Gross, your 68 year old rabbi comes to you and says, I have Parkinson’s disease.  How do you respond?” 

I would say, “Let me know when you can’t do your work.”

So, naturally, I ask, “How long do you think that will be?”

He responds, “How long do you want to keep working? 

“Hopefully another five years or so,” I tell him and he says,

“That should not be a problem.  You are in a very early and mild stage, you’re in otherwise excellent health.” After a brief pause he adds, “But that’s not a promise; no one really knows how any person’s experience with Parkinson’s disease will develop, but we know that it is progressive. You’ll just have to see…now let’s talk about medication and some treatment options.”

Parkinson's, as you probably know, is caused by progressive damage to a region of the brain called the substantia nigra; the damage to the substantia nigra progressively interferes with one's ability to move or to control movement. Some of us develop a tremor in one or more limbs, which is the most visible symptom of PD.

Last December, when I sat on a stool to do my annual reading from A Christmas Carol, my right foot began to shake, and though I was aware of it, I tried to keep my mind off of it so I could focus on Scrooge’s shadow side: ‘a squeezing, wrenching, grasping, clutching covetous old sinner.’

Later, a few people asked me about the foot, and it was about that time that I became more aware of a growing tremor in my right hand. So I made an appointment with my internist, who I saw in January, and he said he didn’t think it was Parkinson’s, but wanted me to come back in a couple of months, which I did. During the second exam I told him about a strange experience I was having when writing in my journal – that my handwriting became small and cramped.

I remember that moment:  he had been taking notes and when I told him about the handwriting he put down his pen and said, “Oh, that’s very significant.”

It’s called micrographia and it’s one of the ways Parkinson’s is diagnosed, since there’s no test for the disease – the diagnosis comes from observation of symptoms and anecdotal observations.

Naturally I’ve been interested in the stories that other Parkinson’s patients have told, and there are lots of them.

The first book I read was Lucky Man by Michael J. Fox. Not surprisingly he tells his story with ‘a sly sense of humor,’ for which he’s known.

It’s also self-critical, since he decided to keep his diagnosis private or secret for seven years. He says, “Having finally made the decision to share my experience with Parkinson’s, I had one goal in mind:  to give an honest account of how over the last seven years, I had integrated the disease into a rich and productive life. It was important for me to convey my optimism, gratitude, perspective, and even an ability to laugh about certain aspects of life with Parkinson’s Disease, being a firm believer in the joke writer’s axiom that comedy = tragedy + time.  I viewed my disclosure as a way for me to move forward in my life and career, not as a summation compelled by catastrophe.”

“This was not a tale of woe…I sought no pity, or tears. Nor was I eager to cast myself in the role of reluctant hero, breaking out of his silent suffering to take his fight public, and serve as a poster boy for the Parkinson’s ‘cause.’ I was simply tired of hiding the truth from people and felt ready, finally, to present it to them on my own terms, with the hope that they’d respond to my story in the spirit in which it was offered.”

By way of a personal anecdote, I had a conversation with Dr. Gross in which I made reference to Michael J. Fox. I asked Dr. Gross if there was a medication I could take in preparation for those times when I know my tremor will act up, like last Sunday morning’s service when I had to hold the hand-held mic in my right hand, the way Michael J. Fox used medication to conceal his tremor in those first years.

Dr. Gross said, “Michael J. Fox is a wonderful spokesperson for Parkinson’s and the search for a cure, but he was not a model patient; he self-medicated and as a consequence built up an early tolerance for the strong meds he was using…not a good thing to do.”

Michael J. Fox acknowledged that it was, in the long run, not a good thing for him to have done, but he had early onset Parkinson’s which is much worse – most Parkinson’s patience are diagnosed in their 60’s or later and it generally progresses slowly.

A more recent book is a memoir written by a well-known and highly-respected Boston cardiologist, Thomas Graboys: "Life in the Balance: A Physician's Memoir of Life, Love, and Loss with Parkinson's Disease and Dementia."

Graboys has been dealt a bad hand since his Parkinson’s came with Lewy body syndrome, accelerating his illness. Graboys lost his first wife in 1998 and developed early onset Parkinson's a few years later.

He tried to ignore his symptoms, putting off the obvious need to get a diagnosis. He tells this story: “Then came a moment, early in 2003, that I will never forget.  I was in the parking garage underneath the Brigham one day when a voice called to me from a short distance away.  It was Martin Samuels, chairman of the Neurology Department at Harvard Medical School and Brigham and Women’s Hospital. He knew nothing of the drama unfolding in my life, but he said to me, ‘Tom, who is taking care of our Parkinson’s’  I was stunned.  I hadn’t even been diagnosed with the disease, though I feared I might have it, and I had  thought I was effectively concealing my undiagnosed symptoms. Yet Martin knew just from looking at me.  I mumbled something dismissive, got in my car, and headed for home.  I was numb.”

Later, after the diagnosis, he writes:  “To my great surprise, the day I had been dreading for so long—the day I fought hard to prevent—didn’t bring with it a sense of defeat and dread that I had feared.  Rather, a sense of elation and relief came over me.  For three years, I had poured all of the physical, mental and emotional energy I could muster into denial and pretense, and it had exacted an enormous toll.  The charade had demanded so much of me, and had come at such a huge psychic cost, that waking up unburdened brought huge waves of relief.  I was out of the closet, and it was liberating.

“Of course, the reality is that I am living with a progressive neurological disease that continues to take its toll—emotional, mental and physical.  It is not a quality of life that anyone would envy.”

But, “I am determined not to let Parkinson’s, which has stolen so much, steal my dignity.  That is what I am really holding on to.  Dignity.  That’s why I exercise, practice yoga, and play the drums.”

Something Tom Grayboys said reminded me of Susan Sontag’s book which she wrote when she was struggling with breast cancer, in 1978, at age 45; she called the book,“Illness as Metaphor,” challenging, among other things, the ‘blame-the-victim’ mentality that she felt was behind the language we use to talk about illness.  (She died in 2004 at age 71.)

She acknowledged, of course, that serious illness is an important event in a life – indeed, it touches at the heart of life, and penetrates to the most sensitive, most vulnerable part of one’s life story.

Sontag writes:  “Widely believed psychological theories of disease assign to the ill the ultimate responsibility both for falling ill and for getting well. And conventions of treating cancer as no mere disease but a demonic enemy make cancer not just a lethal disease but a shameful one.”

I thought of Sontag’s essay when I read the following passage in Grayboy’s book:

“I asked myself…is there something I could have done to keep myself healthy? Was it the grief over Caroline and the intense stress of her illness that somehow triggered my Parkinson’s?  Did I miss something that would have prevented my illness or lessened its severity?  Was I sufficiently vigilant?  For most people, living with serious illness means wrestling with familiar, unanswerable questions, pondering an unknowable future, accepting the unacceptable and, at times, thinking the unthinkable.  You have to discipline yourself to put those questions aside at times, or they will consume you in a vicious cycle of self-pity and remorse.”

I have no patience with those who ask a person with a particular illness: “Now, Frank, why do you suppose you chose to have Parkinson’s.”

That’s different from asking what, if any, benefit may come from having an illness, such as an increased sensitivity and compassion for the suffering of others; but I didn’t need to have Parkinson’s for that.

A week or so ago, when I told Bob and Candice I was going to do this sermon, they asked what I was going to say. I gave a brief summary and said, “I will tell them I know there will be more things I’ll have to deal with but I don’t know what tomorrow will bring.”  Having finished my thought, and paused, I completed the sentence – instead of putting a period after the phrase, ‘I don’t know what tomorrow will bring,’ I added, “and neither do you.”

That’s when Jane Kenyon’s poem, Otherwise, came to mind:

I got out of bed
on two strong legs.
It might have been otherwise…

But one day, I know,
it will be otherwise. 

I got out of bed this morning on two strong legs and climbed into this pulpit to deliver a challenging sermon; like the other 700 or so sermons I’ve delivered from this pulpt. I know that someday it will be otherwise; but for now, and hopefully for the some years to come, I know I have something to offer; I know I can do my work, perhaps offering more than I might otherwise have to offer. 

One response to my Parkinson’s diagnosis is a heightened sense of appreciation for the people who have been supportive, from day one; parents who gave me unconditional love, who knew my faults and failures but loved me anyway; brothers and sisters who were and remain a part of that process of loving unconditionally; children and grandchildren, my former wife whose ongoing friendship and support mean a great deal, and especially my wife, Lory, who knows how to tell me things I need to hear…

For my long-time friends and colleagues…and for you who welcome me into your heart and your mind, even at this very moment as we live out our congregation’s affirmation.

“Oh, I have made myself a tribe out of my true affections.”

I’ll let you know ‘when I can’t do my work anymore,’ but in the meantime I want you to know that I’m feeling a new wave of energy and enthusiasm for this work, and a renewed sense of appreciation for you…for your support, encouragement and trust.

Please don’t think you need to shelter me by concealing your struggles.  We’ll continue to share our successes, of course, but the things that help to bring us together include the difficult times, the adversities.  Shakespeare got it right:  “Sweet are the uses of adversity.”

Sometimes the litter of our lives is transformed into meaningful layers.

I have walked through many lives,
some of them my own,
and I am not who I was,
though some principle of being
abides, from which I struggle
not to stray.
When I look behind,
as I am compelled to look
before I can gather strength
to proceed on my journey,
I see the milestones dwindling
toward the horizon
and the slow fires trailing
from the abandoned camp-sites,
over which scavenger angels
wheel on heavy wings.
Oh, I have made myself a tribe
out of my true affections,
and my tribe is scattered!
How shall the heart be reconciled
to its feast of losses?
In a rising wind
the manic dust of my friends,
those who fell along the way,
bitterly stings my face.
Yet I turn, I turn,
exulting somewhat,
with my will intact to go
wherever I need to go,
and every stone on the road
precious to me.
In my darkest night,
when the moon was covered
and I roamed through wreckage,
a nimbus-clouded voice
directed me:
"Live in the layers,
not on the litter."
Though I lack the art
to decipher it,
no doubt the next chapter
in my book of transformations
is already written.
I am not done with my changes.

Return to Rev. Frank Hall's Sermons index.