An Illness in the Family
These are several articles that were published during the time our daughter was being treated for cancer. They have not been edited, in order to preserve the immediacy of the voice as events unwound during those very difficult years from 1997 through 1999.
The Love That Fills This Community
Although we must— and will— remain watchful, we know our daughter Lila is doing very well. Her voice is suddenly freed up of all the tumors that had, unknown to us, slowly grown around the nerves that led to her larynx during the past few years; and her usual cheeriness is now matched by a dramatic increase in her vitality, now that a poorly performing thyroid has been replaced by a more constant medication.
Emotionally, she is doing just as well; something very maturing seems to have happened within her, and her mother and I are very proud of the way she is handling herself, and taking care of herself.
We are also deeply, deeply moved by the way the community responded to what has happened to our family— moved, but somehow not surprised.
When I first met Maria and we married, I told her I wanted to come back to Sonoma County, where I was raised, to start our family. There, I believed, we would find the best community to help establish our home. Over the years we have taken part in the celebrations— and the catastrophes— that happen here: the hometown parades and the fireworks, and the wine and the art and the poetry festivals— and the fires, and the storms, and the terrible, terrible automobile accidents.
We helped build the Charter School for our children, and they have been active in the Boys' and Girls' Club, and the local organized sports and theater, and of course the Children's Chorale. We brought one of the children of Chernobyl into our home, and went to Arlo's funeral, and to Gloria's spaghetti feed— and all of these events have proved over and over how right it is for us to be here.
When the fireman received the plaque from Gloria in gratitude for helping save her life, I remembered how her dad had raced across the street a few years earlier to rescue a man from the fire that had gutted his home.
We've all been taking turns in this valley over the years, helping and being helped— and I think that's where the real healing ultimately lies. Times of crisis are never the time to isolate ourselves, to crawl under a rock or beneath a bush; instead it is a time to reach out and recognize the community's desire to do something, to give something, its need to demonstrate love.
In youthful empathy Lila once had wished there was more she could do for others in need than simply ask if there was anything she could do; now she tells me how she's learned that simply speaking to those in need is sufficient, because it shows the understanding and caring that helps create an atmosphere of healing.
It's so very true. Countless people have stopped to ask how we've been doing, and if we've been taking care of ourselves— people like Vince calling out from the cab of his pickup as he pulled into the parking lot I was leaving, and Georgette appearing magically in the waiting room at Mt. Zion during the final hours of Lila's surgery— and all the many others who brought food, or took care of our other children, or cleaned our home for us whenever our ability to cope broke down. Every one of them— every one of you— is an angel.
And every gesture of friendship is another reminder that what has happened didn't just happen to our family, it happened to the entire community— another reminder that the love that fills the valley is nourishing every one of our homes— not just our little home.
For this healthy sense of community, our family is extremely grateful.
The Initiations of Adolescence
Just before the biopsy, before we realized our fifteen year old daughter had been suffering from a particularly slow-growing cancer for several years, Lila had gone to hear Jean Shinoda Bolen speak about her new book, Close to the Bone. We knew Lila had been ill for a rather long time, and rather mysteriously so; but we hadn't yet been able to know just what was wrong.
She came back that evening excitedly retelling the story of Persephone's abduction into the underworld and the initiation she was embarked upon, as told by Bolen. I looked at her deeply and knew my child in fact had been abducted, yet not necessarily by a dark force— simply by an unknown and powerful one. Until only recently we had been making her decisions for her, arranging her life for her; but now we could see she was moving beyond our grasp, and we knew it was time for her to make significant decisions for herself, including the medical ones.
Bolen's book is about serious illness, and the way that it can provide deep sea-changes in life, and it rang true to my own experience. Tuberculosis had changed my own childhood significantly, had taken me out of the routine life that continued to be lived on by my young classmates; and I was from then on always different, in ways that I have grown accustomed to (and satisfied by) as a true identity. I have since learned that the teleological attitude— which refers to an ultimate purpose, rather than the etiological one that focuses upon some primary cause— provides meaning where there is hardship, and thereby provides the most possibility of healing. It speaks encouragingly of the direction that can be taken in life, rather than waxing reluctantly nostalgic over a past that can no longer be reclaimed.
Parents may believe at first that they design the child, and make all the important decisions for the child; however, with puberty and adolescence they must begin to phase their role gradually into becoming directors of— and then finally consultants to— the child's own decision making, helping them to become responsible for increasingly significant life choices. Adolescence is perhaps most importantly a time of transition, from the child that is nested and nourished within the family circle to the adult who will participate in the activities of the community as a responsible contributing member.
Adolescence is rather like the engaging of a clutch as we shift from gear to gear— and as important as it is to engage the clutch, in order to ease the shift from stage to stage of life, we know we must not ride the clutch; and we must neither prematurely thrust the child into adolescence, nor protract that adolescence much beyond the useful. Unfortunately, in our society, there are many who "adulterate" the child, sexualizing it far too early, and there are as many who indulge adolescent behavior well into midlife, long after they ought to have been exchanged for the contributions of responsible adult members of society.
We do not, unfortunately, have formally recognized rites of passage within our culture to help mark this transformation, nor do we consciously recognize and admit the child's self-determination except by handing over the keys to the family car, reluctantly granting autonomy when it seems time. Now that she is recovering from the surgeries, our daughter has begun making arrangements for driving lessons, for auto insurance, and dreams of the car she will some day own. We talk together about driving skills and courtesies of the road, she and I, and soon I know she will be taking streets that will take her in other directions than I have chosen— and I will be sad, but I will be satisfied.
Changed by the Flow of Change
The greatest question we may ask ourselves after a significant event I think is: "How have I been changed?" We are changed by that which is constantly changing— the river into which we can never step twice erodes and washes away aspects of ourselves that are no longer relevant, and we are baptized, born again by this washing.
Life-threatening situations often carry this experience: I was thrown overboard at the head of a particularly treacherous set of rapids and waterfalls several years ago, and really oughtn't have survived the ride I took that day, but I did— and was deeply changed by a new appreciation of life.
On the final day of my daughter's radiation treatment last month, when she was finally allowed to visit other patients on the cancer ward, we spent an hour with another young woman who was being treated for an advanced stage of the disease— and she and Lila were laughing together about how much more alive to life they felt themselves to be, now.
These episodes are epiphanies, moments of transformation that bring an insight that demands life be lived differently, in reference to— and affirmation of— life's meaning, rather than in denial or resistance to it. A motto slowly growing in our family over the past half year is: "just say yes!" This seems to imply a participation with life, rather than attempts to manipulate or (on the other hand) to avoid it.
Many years ago I stood at the edge of the Pacific Ocean, contemplating its vast scope and enormous power, when I noticed that my footprints there were gradually disappearing beneath the sweeping wash of its breakers. Dismayed, I thought at first how this proved the temporary nature of my existence, in the face of this great natural power, until I noticed how each wave was forced to change its angle and direction in order to account for the presence of my footprint. Suddenly I realized how my presence— transitory as it was— had forced the entire sea to change.
Then a chain reaction of shifts in the currents that crossed the surface of that sea was caused, and every drop in that great ocean was commanded by its very design to respond in some way to my small footprint at its edge. If I was changed, so was that great Presence that had changed me, by changing me. A serenity then came upon me, as I saw that my mind was indeed contained by the enormous Hand of a design well beyond my comprehension, and that a great intimacy was developing between It and myself.
Sometimes we grow, sometimes we are stretched— but we always must be changed, as though that were the reason for being here. To resist change— or to attempt controlling it in some heroic way that would impose our own agendas upon forces we cannot comprehend— seems most unnecessary, and most unwise.
The Lessons of Illness
After my mother's death, I found a picture of myself as a child among her things. I well remembered that particular photo being taken, on a particularly special day. I had been seriously ill for a couple of years— was in fact not really expected to survive at first, because in those days no cure was known for tuberculosis, much beyond bed rest and prayer. However, on this day I had been considered well enough for my little bed to be taken out into the garden.
In the photograph I am sitting up shirtless, stretching my skinny arms out towards the sun, grinning broadly because I felt so good. The immensity of the disease had become a dark background against which the frank joy of life stood out in poignant contrast, and there was delight in what might have seemed small things for others. I often thought of this photograph this past year as my daughter's illness deepened, and during my wife's long stay with her father back east, during his final months.
Rather than life-threatening, Lila's cancer has become a life-focusing experience for us, and particularly so with Gunther's death. We have grown over the months as a family— grown together, grown inward, and grown forward— but our life has not returned to normal; I doubt that it ever will. We're learning a great deal about family and community, and how important it is to maintain and enjoy every relationship that we have.
One of the major lessons of the past year is that we do not get to have and keep the item and events of life; they come and go of their own accord, and are finally found to be insubstantial— tangible though they may seem at the time. Instead, we only have our relationships to them, and to one another. It is the relationship alone that remains with us— in constantly changing forms, perhaps, but always as constantly present as the land and the sky. Ultimately, our relationships are all that we can have— except that through them we can more thoroughly have ourselves.
When I first met Maria and asked to marry her, some eighteen years ago, I remember saying that marriage ought not be shot through with preservatives to ensure a long shelf-life; rather than depend upon it being simply permanent, we need to know the way that it is already eternal. The fragile vulnerability of the canopy raised in certain weddings reminds us that the only thing real about the home is the people— the people who live within the home, and the people of the community who surround and support the home. These human connections are the only true anchors that we can have in this wayward, plunging world.
The stream of life will carry us inevitably in ways that heroic attempts would resist and struggle against. The irony is that in surrendering to life we do not give it up but embrace it more fully. Only then are we able to participate— more thoroughly, more creatively, more joyfully— in the changes that constantly take place, reaching out to one another in nourishing companionship as we do so.
Here I want to acknowledge a group of very special people that we became involved with early last year. The Sonoma Children's Cancer Foundation (now known as the Children's Cancer Community) provides many services to families like ours, but most importantly they make it possible for us to simply talk freely with one another, in groups and in private, parents with parents, and children with children. The wisdom and the compassion shared there has sustained us through some very dark times; when things get hard— which they do— there has been caring solace there, and when things are easier there has been pleasure in sharing the small, wonderful things of life.
The Changing Family
Now Dora has come to live with us, and once again my experience of family is changing. Now, fully three generations reside within our little home. With her husband's death this past year, all that remains of Dora's family is her daughter— my wife Maria; and so she has come all the way across the country, from New Jersey to California, to join our family and to make our home her own. Meanwhile, in another part of the state, my daughter Dylan and her husband Keith are expecting their first child.
With the birth of another grandchild, and with Gunther's recent death (of the same disease from which our younger daughter Lila is now so gradually recovering), it is a poignant time, filled with emotion, and meaning. I am reminded that what we know as family is always an ever-shifting realm of interwoven relationships, each of which must change to account for changes taking place in the family as well as the changes taking place deeper within each member of the family.
Adapting to these changes seems to come easier for us these days, perhaps because we had already become accustomed to an interminable round of hospitals and doctors, and with them have learned to endure succeeding waves of discouragement and gratitude. We've learned to hope more cautiously, and to take disappointments less personally, so that we do not lose hope altogether. And— we have learned about the need to talk with one another more frequently and more gracefully, with a full heart and an open mind. Strong feelings such as fear and anger are tolerated in our home, even welcomed as a sign of honest reaction and opinion— but rudeness is simply not.
We are learning that anger management involves becoming more personally responsible for any bitter disappointments in life, which is always a challenge. The problem with people who have more complaints than gratitude is that— in their relentless search for satisfaction— they can never be content. Others are held responsible all too often, and even blamed for the lack of pleasure in their lives. There is the need to respect the relationship as a holy ground rather than as a battlefield, as a place for nourishment rather than a place for victory and defeat.
As a family practitioner licensed in marriage, family and child counseling, I have become accustomed to viewing the individual in terms of his or her family— at first in terms of the family of origin that had shaped the person and then, eventually, in terms of the family of choice established as others are included in the building of a new home. The childhood family is the ground from which individuality originally emerges, and the family of choice becomes the way that individuality is lived out. The relationships that we draw to ourselves increasingly reflect ourselves as we mature, and so the home will operate much like the soundbox of a guitar: it will always reflect and amplify the personal lives that are lived there, by means of the relationships that develop there. What is felt deep within one person will always, somehow, emerge to reverberate within the entire family. One hopes it will be harmonious— at least, most of the time.
Earlier this year I was invited to perform a wedding that brought two existing families together into a newly blended family— not an uncommon thing today. In the homily I spoke of a certain hierarchy of responsibilities that must be taken up when this happens: the family is nourished by the marriage of the father and the mother, while the marriage of the father and the mother itself is nourished by the husband and the wife, each of whom in turn are responsible ultimately for nourishing themselves. Depletion always and quite naturally will take place, and so sustenance must take place as well; but seeing to this sustenance is always a personal challenge, not a mutual obligation.
In thinking about the function and purpose of intimate relationships within the family, consider how the eyes must naturally work together. My left eye and my right eye have different perceptions of the room in which I now sit, yet in their collaboration there need be no argument. Instead, their differing views can come together to provide an experience of depth that would entirely escape my attention if either eye triumphed over the other. In just this way, the collaboration of my attitudes and opinions in relationship with those of others in my family can create an experience of depth in life, which would otherwise remain flat.
And as we learn to talk with one another, more frequently and more gracefully, we will increasingly learn to trust and respect one another, and therefore increasingly risk thinking and feeling aloud in the presence of one another. I will continue learning to explore what is taking place within me in the companionship of those I love, and my consciousness will continue to grow along with theirs as conditions within the family continue to change.
This is hard, often tedious and painful work, but it is important work. If it is ignored the family will suffer and go fallow, and members of the family will drift aimlessly until some other place is found they'd rather be. I'd just rather be here, in the realm of my own family, no matter how it may change.
Healing Our Children
Soon after my daughter began recovering from her cancer I joined the board of the Sonoma Children's Cancer Foundation, a nonprofit organization now known as the Children's Cancer Community, which provides services for families that have children with cancer. I wanted to ensure that other families in our community could receive the support we had depended upon during those very hard years. With those services I wanted to provide the hope that I had gained when I was most despairing.
We have set up a web site for the group, which can be found at: www.hopeforcancerkids.org— I believe in healing children— helping them to grow older, and to survive childhood without outgrowing childhood— but I also believe in healing illnesses.
By this I do not mean simply defeating them by cure and prevention, as I had wanted to do so desperately at first, but allowing ourselves to become transformed by them, to become healed by them of something far more disturbing than transient pain and sorrow: a monotonously indulgent, insignificant life.
Childhood and disease (as painful as it is to put those two words into the same sentence) are inescapable aspects of the human condition, aspects of a human vulnerability that is composed of the greatest responsibility and the least control. Illness, I have learned, is not a negative thing to be put behind us, but— like childhood— a mystery to be accounted for: the mystery of life, its beauty, its weight, its meaning, and its atonement.
It doesn't matter if the disease is cancer or AIDS or the tuberculosis I myself had as a child, it's all the same thing with different names: the darkness that seems to threaten to extinguish our light, the wilderness that lies waiting to be explored beyond the gates of polite civilization. Recovery is not putting that darkness behind us but including it instead as one of the most mysterious, dangerous and beautiful aspects of life, something present in all our lives in one form or another.
Although our society in general has no formal rituals, no vision quests to initiate our youths into an adult life (beyond the drivers' license, the senior prom, and the armed services) the child with a life-threatening disease enters into that dark wilderness into which parents cannot go. There, deeper aspects of courage and acceptance can be discovered, and a greater sense of identity and self-esteem may be earned.
The need is to help the entire family— the parents and the all too easily forgotten siblings— to encourage, understand, and welcome home a transformed child, or (sadly enough, at times) to help the family let go of the child that does not return but goes on ahead instead, deeper into that wilderness. It feels like such important work, being with these families, work that is an extension of my own personal work, work that I'm deeply grateful for the opportunity to take up.
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