Hi. Several of you have expressed concern about my well being because of the absence of blogs since June. First, thanks for the good thoughts. Secondly, I am well. But the arrival of Kai in June, Sheila’s torn ACL and knee sprain, the birth of Jonah Michael to Dan and Anna in our “commune,” the excitement of Ben’s role as the younger Patrick in Manchester by the Sea, Maddy’s field hockey prowess, and the pull of sweet Caito yanked me away from writing.
Instead, I am preparing a collection, Dropping Wood, Spilling Water: Chronic Illness, Disability, and Aging as Paths of Consciousness and Being for epublication. “What awaits you, (I am addressing new readers ) as you enter these pages is a series of reflections that encompasses one year of living with my chronic illness—multiple sclerosis, diagnosed nearly forty years ago—and its effects upon my family, in particular my “well partner” caregiver and wife of five decades, Sheila. I think you will find value in this collection; even if only a few paragraphs are helpful I shall be glad. My experience of illness is influenced by a half century of study and work with traditions of consciousness, as well as my practice as a psychotherapist. Regardless of diagnosis or degree of disability and while still acknowledging our differences, those of us who suffer anguish of the body have much in common.”
Well, Dropping Wood, Spilling Water will soon be on Amazon, free to my blog readers, and, of course, I’ll
welcome your reviews. Again, thanks for your interest and concern.
Well, about two months have passed since Kai came to live with us and it’s been everything friends warned us about and all we expected. He has been the kind of teacher that chronic illness can be, but a lot more fun. The Dalai Lama once suggested that he enjoyed problems because they served as mirrors with which to see himself more clearly. The devil, for Buddha, was the aspect of his own nature that did everything in its power, both subtly and more grossly to keep Gautama (the Buddha) from attaining enlightenment. Buddha’s struggles with his devils in whatever form they appeared, as are all of our challenges, were the actual path through which he pursued his aims. And, at times, Kai, expressing his puppy nature, plays the little devil. Oh, did I mention that our plan for Kai took into account my wheelchair limits meshing with Sheila’s greater mobility. So there we are with a cutie pie puppy who sleeps through the night, takes lovely summer 6am walks, and is pretty much house and crate trained. Naturally, we are dealing with annoying and age appropriate nipping and jumping, primarily at Sheila’s legs, skirts, and nightgown. It’s handleable and we’ve started with a trainer. But as Robert Burns reminds us, “The best laid schemes o’ mice an’ men / Gang aft agley.” Fortunately, the teaching of Buddha and others prepare us for the contingencies of life such as puppies, falls, and chronic illness . And then, oops!, Sheila’s knee tweaks on a Kai walk and she falls down, breaking a rib. And while at the doctor’s for that, x-rays reveal she might have a 2nd degree ACL injury which hopefully will not require surgery, but I have to take over all the walking and more time seeing clients with Kai. I may have written earlier about the ABCX model of family stress theory. “A” stands for the distressing recent, “B” for the resources (family, financial, professional, environment, we etc., To vote with the stressor event), “C” for how the event is defined, what meaning we give it (a chance for everyone to pull together, an expected contingency in life, divine punishment, etc.,) And “X” is the the degree to which the outcome of the initial event is experienced as overwhelming trauma or a “simply” difficult event. “Pileup” occurs when multiple crises draw resources from each other, increasing the load on members of the family, drawing down reserves of energy, time, and morale. The devil is in the details, so pileups are excellent fields for work on our efforts at non-attachment to images and expectations. For example, we had a picture on how things would go with Kai based on our memories of Bodhi. But, of course, they are two different (both lovely) dogs, as we are now altered people.We had greater mobility, lived on two floors rather than one, and our memories of ten years ago are, of course, likely to be quite inaccurate. Much of this is characteristic of what happens when one of us has chronic illness and the other of us, often the caretaker, experiences a fall, illness, or a change of job hours or travel. So whether a puppy or an accident, how we respond to the expectable unexpected reveals a great deal of how well we live our lives in the present moment. Do we become impatient with Kai’s puppy ways? Do we quarrel with each other? Do we doubt our decisions and question whether to return Kai? Yes to all those actions and doubts. And then, as we do with any unexpected shower, we raise our umbrellas or put up a tent, allow the rain to pass and move on along the path we’re making and taking, with unseen difficulties and beautiful vistas waiting round unmapped twists and turns with Kai by our side.
Is it possible to truly know another person? Can we know someone as well as we know ourselves? How much of ourselves can be kept hidden no matter how intimate we may be with others. I suggest that not only is it in my interest to be transparent, but in fact there is very little about me you do not know, and I possess as well a nearly complete picture in depth of you. How strange we often find ourselves to be ignorant of one another.
How is this possible? We think of ourselves as individuals with unique and characteristics. We imagine we “contain” a secret self, one that commits acts of which we are ashamed and possesses fantasies and unnshared desires. We mask ourselves with a personality that may be more or less at odds with the autonomous anonymous self that slides behind it. Maybe we think of that invisible “me” as an aspect of soul? So a strong case can be made that we are unknowable, Terra incognita to even our most precious lovers’ enduring and discerning eyes.
On the one of many other hands, I don’t believe that we are solitary souls dwelling in well defended bodily castles. First, we each know the most important facts about each other that dwarf any other subjective ones that may exist about each of us. This I know.We were each thrown into this world, to parents, family, society, and culture with genetic endowments, economic standing, and many other circumstances, all without any choice on our part. Also, each of our bodies is subject to aging, illness, injury, and, most importantly, death. I know this about you.
Secondly, as Buddha realized, and I know about myself and yes about you, we suffer due to our attachment to the belief consciously or not that we can avoid these absolute realities. I know that both you and I cling to a hope that enough learning or war or meditation or sex or health or happiness or math or music or wickedness or power or having can help us avoid the reality of the date expired time stamp of being human. Food can’t be fresh forever, except, perhaps, spirits.
I know that generally, even if we mean radically different things by the words, we prefer kindness to cruelty, beauty to ugliness, creation to destruction. Of course, the particular meanings we assign these terms matters greatly, but at least it’s a starting point for knowing by contrast.
There is a fun philosophical question we play when we ask if each of us sees the same “color” when we see or say “red.” In general, the answer is probably “close enough.” More importantly, I think, is that I know you most likely have and use a word “red” for a range of colors that you perceive. So we share color, music, movement, rhythm. I know so much about you.
I could know a great deal more based upon the demographic data, my buying preferences, the sort of stuff the internet harvests and sells. But it’s such a small portion of you, and I know we both might enjoy finding out about it in conversation by some means or other.
I also know you because we consume each other. To be erotic is to connect. There is good reason why to know and intercourse have meanings that are both sexual and interactive. The breath from my words and the light reflected off you to my eyes literally enters and changes me. The speed with which a spontaneous conversation between two strangers can spiral into a joyful dance of ideas demonstrates how much intuitive knowledge we share of each other. And, of course, no better universal language than the smile. I know more of you than you think, as you do me.
“Earth’s crammed with heaven and every common bush afire with God,” these words of Elizabeth Browning are painted above the archway of the room where we eat, overlooking the flower strewn yard where I now sit in my wheelchair next to a sleeping Kai, my mind constantly distracted from the focused tasks of reading and writing by the breeze grazing my hair, the sound of whispering leaves, distant lawnmowers, and bird song.
My undeserved bounty humbles me. Any complaints I may have about my lot I acknowledge as truly petty and privileged first world chronic illness bits of unnecessary whining, irritability, or impatience.
On the other hand, the poor man, crippled by pain as he propels his simple wheeled board, with U-shaped metal bars to protect his hands, along a crowded city street, and hoping for enough beggared coins to help his family get by for another few days, is an obvious and deserving recipient of compassion and generosity.
But, in the face of life’s true facts, we are equals. Both born to live and to die, to laugh, to cry, to sing, and to sigh. And each of us then has the same possibilities of using our life circumstances to be and to breathe. I use these extremes simply to make the point that the differences in the situations of one or another reader of these thoughts are not likely to be as great as we imagine.
A favorite phrase of mine first used by Freud a century ago is “the narcissism of small differences.” He observed that our friends, peers, members of our social groups are in fact so fundamentally similar that we highlight the slightest ways we differ from each other to accentuate our “specialness,” often ignoring the possibly greater ways we are not like some others.
One example might be how some German Jews thought themselves superior to Shtetl Jews though all eventually suffered the same fate. Another is the social ranking that some African-American formerly gave each other based on pigmentation. A third is the attitude of a few “progressives” who refuse to vote for the Democratic nominee despite the rationally undisputable gap between her and Trump.
And so who am I to be bummed out for more than a moment that I have an illness and you do not. The philosopher Gurdjieff suggested that when we are overwhelmed by inner or outer suffering or we have lost the thread of attention and presence we have reached “the limit of our being.”
What being is that I often wondered. It is, I think, human being. Lost in daydream or comparison, envy or pride, pleasure or tears, the difference between me and Kai or a tree or a boulder is very small indeed. A narcissistic thing, for that time neither a man not woman. And now we and our family face as ever the limits of our beings–Sheila a newly broken rib, Kai a nippy 3 month. And so far, I think, we are usually quite human.
In the early spring as we scattered and raked Bodhi’s ashes into the soil surrounding the Buddha where hostas and hydrangeas promised to grow in the “soul garden” Sheila had created twenty years before, beneath the hemlocks that survived the great hurricanes of the early fifties and the Hemlock Woolly Adelgid blight during the past five years, we knew a new pup was already awaiting us in a litter to be born a few weeks after. Our enthusiasm for the newest member of our family, Kai, was not deterred by the comments of some who thought our undertaking of the task of raising a new puppy was ill advised. Especially when the burden of care would fall primarily upon Sheila who in addition to her roles as active mother, Nana, therapist, cook, and gardener is the wife and caregiver of a physically disabled husband with a serious chronic illness. Many of the same objections were raised by others when rather than “downsizing” as we aged, we expanded our home, adding a full apartment to include our son and daughter in law and their children to be full participants in our individual and joint lives. Similar questions and doubts were voiced when we married forty eight years ago before our senior year in college and when I rejected a four year fellowship to Cornell graduate school to live as apprentices at a newly foundedl “East Coast Esalen” or upon Sheila’s decision at fifty years old to enter and graduate from a Master’s program requiring monthly attendance in Santa Barbara or when… Many of these more recent choices and changes were questioned by friends and peers whose own lives seemed focused understandably on more leisure and travel. Why were we making our lives more complicated or difficult when others were”simplifying” or cutting down? For me several possible answers come to mind. Why would an author stop writing, an artist stop painting, or a marriage stop growing? It is who we are and what we do. From meeting and living through the unknown challenges of love and commitment toward family, dog, work, and each other we must of necessity be alive, alove, curious, and astonished amid what we encounter. If “things” become difficult or we become ill, our circumstances change, or we are dissatisfied with hotel or itinerary, we cannot simply delay a trip or cancel a reservation. We consciously create new ties that bind because we have faith that with effort, patience, and kindness what seem ropes and knots of constriction loosen to become arteries and streams buoying us along to open seas of peace, love, and understanding.
This is the means by which we find ourselves along a path. Not the one laid down by others, but one we ourselves make by not going where others go. We all live, we all die. We prefer to be strangers in the new lands we discover in our own backyard. Remember the length of a shore line varies with the attention and pace with which we walk it. A highway by the coast covers a much shorter distance than a coastal amble. But there is probably far less to see.
When ill, we are often caught in a continually winding spiral of suffering, or samsara in Sanskrit which means circling. I am reminded of the magic circles or repetitive tasks from childhood tales in which the victim, as a result of being diverted by some enticement while upon a mission, a mundane or sacred obligation, or performing a rite, is ensnared by a witch’s curse, goblin’s trick, or day dreaming mind. The circle is not a literal one, yet they tell us of something quite real. They speak of the contingencies of existence. The cycling of fear, denial, fear. When the black crows of anger or disbelief at my situation peck away at me or I hear of rats of fear gnawing at the heart of an ill friend, I know we are in the thrall of neurotic delusion. Neuroses are recurring thoughts and behaviors that provide short term pleasure or the avoidance of pain, but at the cost of long term negative consequences. We get endlessly that which we seek to avoid. In my case and perhaps yours, the imprisoning circles are representative of the obsessive thoughts that surround our worsening illnesses. Is this an exacerbation? A new infection? Requiring an increase of care or a stage toward further disability? It also symbolizes the compulsive acts we repetitively employ in our attempts to avoid the limits and inevitable fates we encounter as mortal humans. Perhaps going from doctor to doctor. Or trying alternative systems of healing. Eating differently. Loading up on this or that supplement, nutrient, or vitamin. One way we get caught up in these mazes of doubt and confusion is when we forget about the great destroyer, Time. Any one difference or change in treatment may improve health for the short term, but eventually you, I, all of us will find no relief from our common end. How often do we forget about the subjectivity of time and how dependent our experience is upon the way it is measured and lived. A second, minute, hour, day, month or year for us can be matched against the number of breaths of air or heartbeats before we die. Indeed if I have a pulse of 75 and live to eighty five years, my heart shall beat 3,350,700,000 times!! Is that correct? Check my math. And we worry that one day it shall, it must give out?
Yes, we may fear how short or brief our lives are. But a beat, a breath, a life for most other creatures is even shorter. What is a day to a moth, a dog, a monkey? And it is true our duration is a flicker compared to a sequoia. a planet, a star.
Our beliefs and pictures of how life ought to be are fixed upon an unconscious fantasy of an Eternity in Eden. And what kind of life would that be? As my friend Francois says, “You can replace everything, man. You can replace your car, your house, even your wife, but you cannot replace what you have now– your life. This is it, man! Live!”And let us loosen the coils of the serpent of despair with attentive presence of mind upon the path that leads us out of the circle.
A new god has come into our lives and home. Kai, a Tibetan Terrier like Bodhi of blessed memory, from the most kindly breeder, Wendyll Behrend of Kensington Kennels (http://kensingtontibetans.com) , Stowe, Vermont. And just in time for the days when Caito is not there for palling around.
The last two months have been a great time to unwillingly be reminded of the phrase associated with chronic illness: “sick and tired of being sick and tired.” Two months of one long UTI or of recurring ones equals 8 weeks of antibiotics and probiotics. And just when I think I’ve killed it, it began again. My doctor agreed at my request t0 try out a prophylactic antibiotic which, of course, has its serious up and down side, the downside being making the bacteria for which the medication has been effective more resistant!
Similar to when I had my lovely monthly dosing of steroids which were administered to tamp down inflammation to minimize immune responses which is the foundation of m.s., an autoimmune disease, but which had the unfortunate accompanying effect of lowering the immune system and then making me more vulnerable to infections which of course initiated a heightened immune system response. But I did love that weekend of steroid, going without sleep, clarity, and creative production. Of course Mondays I crashed, but it was worth it.
In any case, there were are on Father’s Day in the emergency room at 200 to get a CAT scan on the day of the strawberry moon rather than attending a wedding on the Cape. Of course I gave them a urine sample when we got there. At 600 two great pieces of information. The first to a dehydrated me, “oops, we spilled your sample,” and the second from the ER doctor, “if you were sent here to get a CAT scan, you go straight to radiology. If you’re here, we decide what you need.”
Aaaargh! and Waaaaaaaaaa!
In any case, thing moved along there as quickly as possible and we emerged from the hospital to a beautiful summer night of the solstice, full moon shining. And once again lessons in patience, living with uncertainty, and many others all of which Sheila carried off better than I.
As for Kai’s first day, mellow, playful with ball, duck, and stick. Ate well. At night, in crate crying until we covered three sides with towel, put on light classical, and slept until all of us awakened by birds. Next day rest with an around the block walk that he did magnificently followed by sleep. A wonderful pup!!
Life is the clause within eternity, between the two commas that are birth and death.” Bobby Shuman, 7th grade, 1960
“The pattern isn’t visible until the carpet’s fully woven.” Robert Shuman, 1996.
I write this piece with the awareness of the two poles of our humanity recently so vividly displayed. The first aspect of our nature is horribly displayed by the evil massacre of more than fifty people in Florida. Of that, I have no more to say then may blessings of peace in good time rain upon them, the wounded, and all of their families and friend and may we defeat the most dangerous terrorist group in the world, the pro-gun, anti-environment Republican Party.
The second side of our nature, and of particular relevance to us who live with chronic illness or disability, is the death of Muhammad Ali and, more importantly, the manner of his being during his extraordinary life. Born with magnificent physical talents and carrying what were and in many ways still are burdens of race, color, and class, he transcended these limits. Ali was an exemplar and embodiment of the better possibilities of being human, developed in body, mind, and heart. He was, in my opinion, with all his faults and flaws, a saint.
I was a student in Abraham Maslow’s last class. Studying positive human behavior and potential rather than pathology, he introduced the concepts of hierarchy of needs and self actualization among other achievements. Asked by many young people who experienced “peak experiences” often induced by drugs whether they might be “self-actualized,” Maslow wrote: Young people have not had time enough to experience an enduring, loyal post-romantic love relationship, nor have they generally found their calling, the altar upon which to offer themselves. Nor have they worked out their own system of values; nor have they had experience enough (responsibility for others, tragedy, failure, achievement, success) to shed perfectionistic illusions and become realistic; nor have they generally made their peace with death; nor have they learned how to be patient; nor have they learned enough about evil in themselves and others to be compassionate; nor have they had time to become post-ambivalent about parents and elders, power and authority; nor have they generally become knowledgeable and educated enough to open the possibility of becoming wise; nor have they generally acquired enough courage to be unpopular, to be unashamed about being openly virtuous.
As I’ve suggested before, it is interesting to see how many of the conditions for self-actualization are consistent with a recognition of limits, imperfection, and humility and have little to do with progress, individuality, or health. To move from being fixed on a cure for the body to being open to the healing of the person and the soul is a profound shift.
What makes Ali so extraordinary is that he met the criteria for self actualization at a relatively young age when his change of name due to his religious conversion was met with nationwide anger. But it was especially marked by the principled stand he took against the Vietnam War despite the many injuries he suffered as a result. Yet he remained committed to his path of resistance. And despite his youth, scorned and attacked by powerful government and business interests, he expressed his ideals with passion, intelligence, calm, and escalating amounts of goodwill.
“I think he decided,” said Bill Clinton in his simple yet deeply perceptive eulogy, “before he could possibly have worked it all out, and before fate and time could work their will on him, he decided he would not be ever be disempowered. He decided that not his race nor his place, the expectations of others, positive negative or otherwise would strip from him the power to write his own story….”
And then Clinton flipped our usual way of thinking of a life’s course and certainly of an athlete’s. “I will always think of Muhammad as a truly free man of faith. And, being a man of faith, he realized he would never be in full control of his life. Something like Parkinson’s could come along. But being free, he realized that life still was open to choices…
“The first part of his life was dominated by the triumph of his truly unique gifts…we should all be thrilled,it was a thing of beauty. But the second part of his life was more important. Because he refused to be imprisoned by a disease… he perfected gifts that we all have, every single solitary one of us have gifts of mind and heart. It’s just that he found a way to release them in ways large and small.
“So I ask you to remember that,” President Clinton went on, “We all have an Ali story. It’s the gift we all have that should be most honored today, because he released them to the world, never wasting a day that the rest of us could see anyway, feeling sorry for himself because he had Parkinson’s.
“Knowing that more than three decades of his life would be circumscribed in ways that would be chilling to the naked eye,” the President concluded with a challenge to all of us, “but, with a free spirit, it made his life bigger not smaller, because other people, all of us unlettered, unschooled, in the unleashing said well would you look at that look at that, may not be able to run across the ring anymore, may not be able to dodge everybody and exhaust everybody anymore, and he’s bigger than ever, because he is a free man of faith sharing the gifts we all have. We should honor him by letting our gifts go among the world as he did. God bless you my friend, go in peace.”
Families have always engaged in moral discourse when confronted by the challenges of chronic illness. We cannot avoid addressing the ethical and moral judgments and dilemmas that are such an important dimension of the illness experience. Our and our families’ questions about who is responsible for whom, for example, go to the heart of defining a family’s ethos. Its everyday moral vocabulary includes should and ought, commitment and responsibility, owing, shame, tragedy, and pity.
Our families not only join together in moral “polylogues,” with all the passion and pain that situations that really matter evoke. They also demonstrate in a mostly unheralded way the four classical virtues of courage, phronesis, temperance, and justice. We show courage as we accept and withstand the losses and suffering that are common companions to illness. We exhibit a sense of justice when we make the inevitable choices about the allocation of resources, whether of time, money, or attention. People struck by misfortune are commonly forced to select among incommensurable goods as they attempt to salvage something from their previous lives. How can one quantify who is more deserving of this or that support, aid, or companionship?
Our family members demonstrate phronesis— practical wisdom—when they decide whom to include in their conversations about proper care and how to develop and follow through on a sound course of action. Temperance is the virtue on display when individuals and families attempt to balance all these concerns and share the weight of their burdens. The language of virtues is a lovely one with which to reflect upon and discuss how people attempt to solve the difficult problems in their lives.
“What is the right thing to do?” and, “What kind of person (father, mother, son, daughter) do I wish to be?” are moral questions. In the course of everyday life, our behavior implicitly poses such questions, with little reflection on our part. It is through the answers we receive, from others as well as ourselves, that our character, self, and family are formed.
In Erik Erikson’s psychosocial view of personal development thr0ugh the life cycle, for example, identity formation is at bottom a process of building character. The ability of our family and community to help us through our developmental crises lays the foundation for the emergence as we age, of hope, will, purpose, competence, fidelity, love, care, and wisdom. Our family, then, is a moral and ethical milieu in which we learn from each other a sense of fairness, reciprocity, generosity, and commitment.
We find ourselves in families, whether one or many, bound by ties of kinship, marriage, intimacy, and responsibility. Receiving life, care, and opportunity from our parents, participating in the give and take of family life, expressing vows of marriage and fidelity, bringing children into the world, initiating and sustaining friendships and drawing new people into the web of family relations—these are among the many events that confer ethical obligations upon ourselves and others.
The changes wrought by illness to our habitual movements and sensations affect, of course, not only the emotions experienced but the manner of their expression as well. It is difficult if I am in a wheelchair to stomp off in rage or to get away quickly to cool off. Many of the symptoms of a variety of chronic illnesses include physiologic responses that in our culture we have learned to read as signs of emotional upset or stress. Headaches, diarrhea, skin rashes, and fatigue, for example, are all popularly associated with feeling upset.
Many of the us use these symptoms as clues: we track them back to their source in some personal difficulty or concern. When we’re ill we may come to identify such somatic complaints as manifestations of illness. We often may have to create a new geography through which feelings are located and alternative routes by which emotions are tracked and articulated.
Ironically, if we acquaint ourselves with the worlds of deaf persons or watch ourselves and others closely, we can discover how much we take for granted the web of connections and interweaving of body, thought, emotion, communication, and sociability that we inhabit. We all have personal patterns of posture and gesture, intonation and facial expression. Reflect how quickly we or our partners can pick up who we are speaking to on the phone. Continue reading →