But those who wait for the LORD shall renew their strength,
they shall mount up with wings like eagles,
they shall run and not be weary,
they shall walk and not faint.
Isaiah 40:31
Our neighbor, Lisa, just hurried over to tell us that there were two eagles in a tree outside our window. We all went to watch them while they perched together for quite a while, then rose up and flew out across Bellingham Bay. Marilyn managed to catch a few pictures.
Somehow I feel humbled by the sight of these great birds. Some of it is mythology, I suspect, but more rests in Isaiah's promise that the faithful shall mount up with wings like eagles. As my breathing becomes more limited, I know that I shall not mount up with such strength in this life, but I hope, and do believe, that the promise extends into the eternal now. I do look forward to the ability to rise up without being winded, and even to emulate the eagle's flight.
The visitation of eagles was the perfect touch on a quiet day.
Next, my kinsman, you powdered your sorrow,
you gave it a back rub
and then you covered it with a blanket
and after it had slept a while
it woke to the wings of the roses
and was transformed.
Anne Sexton
This portion of Anne Sexton's poem captures a fugitive wisdom. Sorrow (or grief) is most often hidden, put out of mind, set aside and ignored. It is so painful that we seek to avoid addressing sorrow, hoping that there is some less painful antidote. As a result, sorrow persists hiding behind the emotions and activities of each day.
What would happen if we were able to befriend our sorrow, powder it, give it a back rub, cover it with a blanket? I confess that I can understand this intellectually better than emotionally. I have always found it helpful to share feelings with another. Yet the idea of pampering unhappy feelings seems appropriate. I do believe that such care might awaken sorrow to wings of the roses and be transformed.
I mentioned that it would be nice to bring out two favorite pieces. Suddenly they were in the living room. My family does hasten to meet my every whim.
The Otter bowl
And the Swan vase
IN thy name, O Jesu
Who wast crucified,
I lie down to rest.
Watch thou me
in sleep remote,
hold thou me
in thy one hand;
Watch thou me
in sleep remote,
hold thou me
in thy one hand.
Celtic prayer
Sleep has been interrupted for the past few nights. I find myself awake for periods of time. I am not uncomfortable, not worried, simply alert in the soft and silent darkness. These have become times of prayer for me; for family, for many people in the parish who are also dancing with cancer, for the whole congregation of the First Congregational UCC of Bellingham, Woodland Hills Community UCC, and the small company of folks who sustained La Mesa Community UCC in Santa Barbara until it was closed last Memorial Day, and finally the wonderful cloud of witnesses who have contributed to the blog.
That process frequently merges into a period of sleep. But there will be other occasions of wakefulness. These become times of thanksgiving. Sometimes they are undergirded with the ancient Jesus prayer used as a breath prayer. (Inhale) Lord, Jesus Christ, Savior, (exhale) have mercy upon me a sinner. It is not that I am feeling especially sinful these days, but there is comfort in a mystical tradition that has sustained so many of the faithful over many centuries.
The Celtic tradition has also spoken to my spirit with comfort and assurance. The simple prayer at the beginning of this note has a curious form: Watch thou me in sleep remote, hold thou me in thy one hand.
I wonder what sleep remote means, and yet, what comfort it is to know that Christ needs only one hand to hold me safely through the night. Certainly the other hand is available for you or whomever might need that healing touch.
I have spoken of feeling buoyed by the Spirit. I also cherish the thought of being supported by the Creator's everlasting arms, and now by the gentle touch of Christ in sleep or wakefulness.
O God, who broughtst me from the rest of last night
Unto the joyous light of this day,
Be thou bringing me from the new light of this day
Unto the guiding light of eternity.
Unto the guiding light of eternity
Celtic prayer
Today has been relaxed. A couple of visitors, a nice quiche lunch with delicious raisin bread brought by last night by a neighbor. I am feeling well and have been reading and napping all afternoon. Delicious!
It occurs to me that I think little about death. I see dying as a natural physical process which is progressing somewhat mysteriously at its own rate. On the other hand, my thoughts are on life and the joys of relationship and family. My preoccupation is with life and the beauty of each day. I think this is not a denial of death but an affirmation of life.
This afternoon I remembered two special items that have been stored for some time. One is the pottery otter bowl we bought many years ago. The other is mental vase with two swans, necks entwined. Somehow they became important pieces of nostalgia and I have asked that they be brought back into the living room where I can enjoy them again.
In the 1960's I had the privilege of taking a class from Abraham Joshua Heschel, one of the great Jewish theologians and mystics of the last century. I have read his writings over the years, always with appreciation and insight. He writes:
THE greatest problem is not how to continue but how to exalt our existence. The cry for a life beyond the grave is presumptuous, if there is no cry for eternal life prior to our descending to the grave. Eternity is not perpetual future but perpetual presence. God has planted in us the seed of eternal life. The world to come is not only a hereafter but also a herenow. . . . Death so understood will not be distorted by the craving for immortality, for this act of giving away is reciprocity on our part for God's gift of life. For the pious . . . it is a privilege to die.
Perhaps this helps explain why I am not preoccupied with death. Life itself is so rich and abundant that I cannot ignore its mystery and bounty. Rather I celebrate life and feel deep gratitude for it. That provides a bridge and an eternal home in the divine.
Theologians talk about a prevenient grace that precedes grace itself and allows us to accept it. I think there must also be a prevenient courage that allows us to be brave—that is, to acknowledge that there is more beauty than our eyes can bear, that precious things have been put into our hands and to do nothing to honor them is to do great harm. And therefore, this courage allows us, as the old men said, to make ourselves useful. It allows us to be generous, which is another way of saying exactly the same thing.
From Marilynne Robinson, Gilead, p. 246
Yesterday I enjoyed a visit from Lad Anderson. I have asked Lad to preach at my Celebration of Life service and I am grateful that he has agreed to do so. Conversations with Lad are always substantial, moving below the surface of things to probe meanings.
One of the questions he raised was related to Elizabeth Kubler-Ross' identification of five stages of response top terminal illness. They are: denial, anger, bargaining, depression, and acceptance, Lad noted that I don't seem to be moving among these categories, but seem to have begun with acceptance. Of course, later studies indicate that the five stages are metaphors which apply to some people and not to others.
I confess that this is something of a wonder and mystery to me and I have thought a good deal about acceptnce. I have sometimes attributed it to a lifetime of participation in the community of faith which must have taught me something about the grace and support of God. Other times it seems to me that it is your prayers which provide that surprising cushion of peace.
Marilynne Robinson's Pulitzer Prize winning novel Gilead was recommended to me by Sherri Winans and I have just completed it.
The novel is a letter written by The Rev. John Ames in 1956 to his seven year old son. Ames is in his seventies and near death from heart failure. He wants his son, when he is mature, to have an account of his life. I found it easy to live within the experience of this gracious and very thoughtful minister. While thoroughly Christian he is also reflective and respectful of other faiths and no faith.
The passage above contains some of his final reflections, working out a theological possibility for courage and a sense of wonder at the mystery and transience of creation. John Ames sees beyond sight and draws strength from a tradition he knows is flawed. It is that mystery which nurtures preachers and comforts people of faith.
NOW I lay me down to sleep,
I pray the Lord my soul to keep.
Four corners to my bed,
Four angels there aspread:
Two to foot and two to head,
And four to carry me when I'm dead.
If any danger come to me,
Sweet Jesus Christ, deliver me.
And if I die before I wake,
I pray the Lord my soul to take.
Old English prayer
We have sanitized this old prayer, of course. Who wants to put their child to sleep with the image of death in their mind.
When the prayer was written it was by no means certain that a child would reach maturity. Disease war and, accident were rampant. Few families had not experienced the loss at least one child. In that context the prayer was prudent.
And in my context the prayer becomes relevant once again. Someone recently reported that a person they had accompanied to the brink of death saw two angels standing at the foot of her bed. Perhaps that is possible. I can't see angels yet, except for those of you who continually bring me messages from God.
I hope they do surround my bed, and at the right time provide an escort into the wondrous unknown. That is a comfort.
Before his death, Rabbi Zusya said,
"In the coming world, they will nor ask me:
‘Why were you not Moses?'
They will ask me:
‘Why were you not Zusya?'"
Martin Buber
This is one of the most profound images from the Jewish mystical Hasidic tradition. It has been a guide for me over the years. What a relief to understand that the Holy One does not value us based upon how well we have patterned our lives after the saints. On the other hand, how intimidating it is to consider what constitutes being our full selves, exercising our God given gifts.
Of course, becoming fully ourselves is a lifelong task. It involves the process of loosening the expectations placed upon us by parents, peers, mentors, and often religion itself. This unraveling of who we are called to be and who we have been expected to be can be an arduous journey. I have found that often we need a permission-giver to encourage us to try something new, to risk different behavior. One of the joys of authentic community is that our gifts are called forth and we can discover the joy, and often the struggle, of attempting something larger than we had imagined. The church is full of such creative risking.
I have always liked Frederick Buechner's advice on Christian vocation which he defines as the intersection between our passion and the world's need. I suspect that is the place where we become ourselves.
In this period of my life, where I have the opportunity to see the past as a whole, you have helped me discern a shape and pattern of ministry which wasn't fully evident or conscious while it was in process. I am grateful for that insight and affirmation.
This morning I had a visit from my Hospice bathing attendant, Michelle, and Hospice nurse, Nancy.
Although I can bathe myself with a new bath bench and shower head on a hose, it does take its toll on my rather limited breath. So Michelle is coming Monday, Wednesday, and Friday to assist with the shower/bath. I have found this to be comfortable and pleasant experience, as close to a spa as I expect I will get. And as we become acquainted with one another it will be easier to rely more on her at that time when bathing options are more limited.
I find myself looking for places to steady myself while walking, and Hospice has ordered a cane with the feet to provide extra stability. I expect it will make me feel a bit more secure in and outside the house. It is with a certain sense of admiration for all those in the congregation who use canes and walkers that I join their company.
Nancy came a week ago and said she would see me in another week. She said the dame thing today. It seems that I am pretty much the same as last week.
The fluid in my right lung seems stable, my appetite is good, I am still on minimal medication: 2.5 mg of Methadone per day plus some steroids, and antacid to compensate for them. At night I use a couple of Tylenol PM to assist sleep (steroids can cause insomnia). Usually sleeping is pretty good with a few bathroom breaks.
I have some swelling in the feet (steroids again) and a broken blood vessel in my eye, but that has happened from time to time in the past as well. Nancy always asks about my pain level. I told her it was 1 on the 1-10 scale. It is essentially below my conscious awareness almost all the time.
I use oxygen for parts of each day and have a portable tank in the bedroom to help me catch my breath when I climb the stairs. Hospice has provided morphine which is used, not for pain, but because it can increase the transfer of oxygen to the bloodstream. I haven't tried it yet but know that if I have trouble breathing it is available. That makes me more comfortable.
It is reassuring to know that I don't need a visit from Nancy for a week, although she always urges us to call her if there are any questions at all.
I still am living in a state of gratitude. Awake at night I give praise and pray for you all. Each morning dawns as a new gift and grace abounds.
Today was confirmation Sunday at FCC Bellevue, UCC. We sang "I Was There to Hear Your Borning Cry". This song always makes me cry. First of all, we sing it at every baptism so it always reminds me of Allie & Nicole's baptism. But, especially lately, the words speak to me on a deeper level as well:
|
"I was there to hear your borning cry, |
In the middle ages of your life, |
What a loving, Fatherly presence. Yes Fatherly. While I am happy to see God as a mother figure, and in the many other ways we search to describe our relationship with God, the father figure has always resonated with me. While I embrace the new, inclusive ways that we speak about God, I cling to the familiarity of the father figure as a warm, embracing and comforting way of understanding our relationship with God.
As a preacher's kid, my father was not only ‘Dad' but also my minister. I've had other ministers as I've grown, but Dad was always the measure by which all ministers are compared. I've never really put it into conscience thought, but I guess what I am trying to say is, in short, Dad is my face of God. While we sing this song, I feel the loving presence of God in the lyrics, but I feel the loving presence of my father as well.
Don't get me wrong, I don't confuse my father with God. But he was always the physical loving presence here on earth, showing me by example the love that God has for all his children.
He was there to hear my borning cry and he rejoiced the day I was baptized, but he won't be here physically when I am old. Not that this should be a big shock to me, most parents die before their children grow old. I realized however that I need to transition from my own father's presence here on earth, to the awareness that my faith will have to be strong enough to know that he will be with me in spirit as I grow old. We will continue to dance together I truly believe, but the selfish part of me wants more time to dance together physically here on earth.
And so, not surprisingly, I found myself once again in church with tears streaming down my face. I really need to remember that I can't go to church without my Kleenex!
Over the years I have collected images, poems and prayers which have meaning for me. Now some of them seem especially appropriate. From time to time I will post a reflection based upon one of these.
Creator of the world, keep me sane,
Keep my sense and wisdom, until
You come for me.
Scottish Gaelic song
If I am anxious about anything, it is the possible loss of sense and wisdom as my cancer progresses.
I have experienced the effect of powerful drugs which relieve the pain of the body but dim the intellect. I am grateful for the relief, of course, and need it at times. Following surgery when I was taking OxyContin, the effects included a tendency to gently hallucinate when I closed my eyes. It was as though my unconscious imagery was being taken over by the medication.
While awake, I found that I couldn't read the series of legal mysteries by Robert Tannenbaum to which I was addicted at that time. My mind just couldn't follow the more complex plots of those novels. Instead I read Alexander McCall Smith's Ladies Number One Detective Agency which were delightfully simple to follow.
For most of my life it is my mind that has organized my world and articulated what I believe. These days I am seeking to be more in touch with messages from my body and the deeper voice of the Spirit. I know that provisions are in place to care for me whatever my condition. Perhaps my challenge is to give over my sense and wisdom to others as part of letting go. I do know that I shall be buoyed by Spirit and love through the slowing of the dance when that comes. For this I give thanks to God.
Although Christine's great butterfly has been our mascot since day one on the blog, we decided it should have some friends. Pop and I shot a bunch of pictures of items from his butterfly collection, and had an afternoon of Photoshop fun (if he weren't sick, I'd make him retire and come work for me as doing website production). The end result is something we modestly like to call THE BUTTERFLYZER, or the butterfly randomizer (thanks to Dan Benjamin for the cool randomizer script), which is displayed to your left. Refresh for a new random butterfly image.
Also, remember that comments are like bread--they're best when fresh. Put them on the newest thread so that they're easier for everybody to find!
A favorite web site over the years has been Poetry Today. And a poet I have come to love is Ellen Bass.
When I Die is a wonderful mix of images, physical and metaphorical. The first lines are:
When my heart does its last
lovely squeeze, faithful muscle,
squishing one more glob from the
toothpaste tube of the ventricle,
when my lungs suck a final breath, claiming
their remaining share of oxygen that trees
and fields of corn and lowly roadside weeds
provided all these years . . .
The complete poem is here:
Not heavenly cloud
but tulip opening wide
dazzling my eyes
Two ripe oranges
one exquisite bar of soap
balm for tongue and skin
Soft knitted green scarf
love woven in every stitch
warm heart and spirit
A thought on a blog
the response opens new worlds
Spirit surfing web
Dying is simple
when embraced by your presence
grace must be like this
Have we lived before
each life must be a wonder
this one is best
Our conversations here have been delightfully light and certainly reflect our mood at the moment. Underlying the enjoyment of friends, the appreciation of the beauties of each day, and the gift of a good appetite, is the fact that my tumor is still growing, and the medications which are giving me energy will not sustain it forever.
I don't feel like a dying man at the moment. However, I do not want to exist in denial of the undetectable progress of my disease. This is not particularly morbid. I think it is a mental preparation for physical losses which are sure to come. I hope that by anticipating them I will be able to cope better with them.
In everything I feel guided and sustained by the Spirit.
One of the things I've always loved to do at this house is to take pictures of sunsets. When we first moved here I would take sunset pictures from my room and send them to friends hoping to instill a great jealousy that I not only had a view from my window, but awe inspriring view through a HUGE picture window looking out over the water.
I no longer attempt to instill jealousy, but I do still love to take sunset pictures. This one is from last week just as we were sitting down to that fabulous salmon dinner that dad mentioned already. Even a fabulous dinner has to wait for the sunset pictures! But as you can see, it was well worth the wait!
This morning, Dani, Martin, James and I took a walk around Lake Padden. The sun was just starting to rise in the sky and the lake was quiet and peaceful.
I have been looking over old digital images and found this picture I took a few years ago in one of our church school classrooms. It seems appropriate for the beautiful Spring days we are enjoying in the Northwest.
Hidden here, in one of Marilyn miniature fairy gardens, is one of 22 Ben & Jerry Cherry Garcia singles. Daughter, Jeni Craswell, took it upon herself to investigate the mystery of why the singles are so scarce in our area. Haggens had them for a time but they aren't part of their regular stock. Nor have we been able to locate them in Bellingham.
So Jeni has contacted Ben & Jerry's marketing, a number of stores, and the Washington state distributor. She found that the only place that had stock was the super Wal-Mart in Marysville. On the way up to Bellingham yesterday, she stopped and bought me what is probably a lifetime supply—twenty-two delicious individual cups with cleverly designed plastic spoons.
I have learned that when Jeni takes on a task she persists until she is successful. It is simply another small blessing and another reason to admire the gifts of our children.
This afternoon we had a special visitor who left me filled with that energy which only comes from holding anew baby. Jeff and Autumn Tetrick, and Grandmother Millie, brought over three-day-old Hazel for a nice visit.
New life is so wondrous, so beautiful, and so fresh, that our whole family gathered around Hazel watching her sleep, awaken, look about, grimace, make faces, and generally entertain us all.
I made up business cards some years ago that identified me as a pediatric pastor. New babies have always been a favorite of mine because they are transitioning from one world to the other.
Hazel didn't tell me anything specific, except that she was happy to be part of this bright and wonderful world, and that she knows she has chosen very special parents.
This morning Nancy, our Hospice nurse, visited. We have come to appreciate her quiet wisdom and candor and look forward to her visits. She says I seem to be pretty stable and am functioning fully: getting upstairs to sleep, taking care of personal needs, feeding myself, and comfortable on my own when others are busy.
My blood pressure is in good range and the fluid in my right lung seems to be stable at the moment. I use oxygen occasionally, but more as an experiment than a necessity at this time. Nancy said I was doing so well that she would wait a week for our next visit, but that I was to call if there should be any concerns.
We have had lots of company and I have enjoyed the visits. I do find that about 20 minutes allows time for a good conversation without tiring me too much. Several sets of friends are coming from California in the next few weeks. It is a little embarrassing to be the object of such attention from a distance, but I realize that physically saying goodbye is important to family and friends. And it feels good to me as well to acknowledge the holy moments we have shared over the years.
Each day continues to be full of love and joyful discovery. Each day is infused by the "Sweet, sweet Spirit" as we sung at the Custer United Methodist Church last Sunday. Thank you all for the sweet spirit you being in prayers, cards, visits, gifts, and strawberry rhubarb pies.
Growing up in California there were certain experiences and tastes that weren't a part of our life experience. Moving to the Northwest we relished the wonderful foods and customs of our new home, except for one. We had never developed a taste for rhubarb. When friends learned about this critical personality flaw they assured us that we just had never tasted their rhubarb sauce, rhubarb pie, or rhubarb strawberry pie. Over the years we have been served some of these delectables, but just hadn't quite developed the taste for the essence of rhubarb.
It may have just changed. On Saturday night, friends Pete and Sue, brought and joined the family with a superb dinner of salmon, stuffed zucchini, salad and — strawberry rhubarb pie. Everything was simply delicious. I. For one, pigged out. And the pie was the perfect finish to the meal.
This evening, Lynne surprised us with another strawberry rhubarb pie. We can hardly wait for dessert time. And I think I am learning another lesson. If all the Northwest seems to crave and love something to eat, it must be good!
This morning Marilyn and I attended the Custer United Methodist Church where Bobbi Virta is pastor. I was eager to see Bobbi in her new setting and this seemed a good Sunday to visit.We arrived a bit early and Bobbi's husband Pasi was there to greet us and suggest a good place to sit (in the third pew). When the service started he joined us.
The church just celebrated its centennial although the building is newer. It is clear that the congregation loves this building. It is beautifully kept up, clean and inviting. The sanctuary has spectacular stained glass windows in different styles. It is clear that at Custer everybody knows your name. The warmth and sense of family is palpable.
The service was comfortable and informal with a number of laity taking part, leading favorite hymns at the beginning of worship, sharing announcements, providing a time with children, and reading scripture.
Bobbi provided the context of the theme of Jesus welcoming followers into the sheepfold and made the metaphor both inclusive and intensely personal. The sermon balanced the text with our lives as faithful people. Several times during the preaching she did what I always look for in fine preaching. She surprised me by drawing something out of the scripture that I didn't expect, like "If Jesus is your shepherd, no others need apply."
Following the sermon, Bobbi invited people to share joys and concerns. Following each one Bobbi shared a brief extemporaneous prayer ending with "God hear our prayer" to which we answered "And in your love, answer."
Marilyn and I returned home feeling that we had found a lovely congregation where the worship of God was authentic and artful. And we all felt grateful for Bobbi Virta's gift for ministry.
Sometimes, when I have sleepless periods in the night, I find myself lying quietly with a mind filled with gratitude. I don't know why this may be, except for the enormous support and prayers from so many. At such times, an old collect often comes to mind. It is a prayer I have used most frequently at the grave side for committal services. Yet it seems to be a prayer for all times and stages of life. It is comforting to me to acknowledge God's support in all the phases and experiences of life.
O Lord, support us all the day long,
until the shadows lengthen,
and the evening comes,
and the busy world is hushed,
and the fever of life is over,
and our work is done.
Then in thy great mercy,
grant us a safe lodging,
and a holy rest,
and peace at the last;
through Jesus Christ our Lord.
Amen.
How have I been feeling? Very well overall, strange as it may be seem. My small discomforts are an ache in the hip and shoulder but the medication reduces them to a level below my awareness. I am somewhat short of breath when I walk and especially climb the stairs but with patience those small journeys are manageable. I have oxygen and use it part of the day as needed. Yesterday Marilyn and I strolled leisurely to the end of the block and back. Just getting out into the sunlight and becoming aware of the flowering trees on our street was a small burst of joy.
I have been sleeping pretty well, awakening once or twice in the night. Tylenol PM seems to be about the right remedy for me at this time. The steroids I am taking cause some sleeplessness otherwise.
In the mornings I have been shaving and showering myself, although the process leaves me pretty winded for a time. Yesterday Marilyn cut my hair so I wouldn't begin to resemble Howard Hughes at the end. Then she helped me with a bath. It was a great pleasure to have someone assist with the bath and wash and dry my feet which seem to keep growing further away from my hands.
This morning I was up early and decided to shave and shower myself. We have a grab bar in the bathtub so I can hold onto something during the process. After the shower I stepped onto the bathmat to dry myself and got everything but one foot. Standing on the other foot, holding the bar and drying with the other hand I simply lost balance and rather elegantly slithered down to the floor. Nothing bruised or broken, just a little embarrassment at trusting my balance too much. It is another reminder that I need to release a bit more personal responsibility, and receive the assistance of others. I suspect this will be an ongoing learning process for me. Today the bath aide visited, as Dani has so elegantly written. She ordered a bench for the bathtub and will come next week to instruct Marilyn and me on bathing comfortably and safely.
I know intellectually that dying is a process of letting go. I need to learn that lesson physically and emotionally as well. To release oneself, body, mind and spirit seems to be the path I need to follow at this time. I treasure these moments of clarity, knowing that at some point discomfort and medication will dull even that gift. At that time I will place myself in the care of those who surround and love me. The dance continues.
Yesterday, we met Nancy, the hospice nurse who will be dad's regular contact with hospice. (Glad to see you on the blog Nancy, visit us here anytime!) Today we had a visit from Vicky, the hospice social worker, and Michelle, the hospice bath aide. Sometime in the coming week, dad will be visited by the hospice chaplain. That will leave only the hospice personal shopper and the hospice gourmet caterers to meet. Of course I am kidding; we have been incredibly impressed with the Whatcom hospice team. At this point, while dad is feeling pretty good, it is very helpful to get to know everyone and to see that we have another layer of resources to turn to as his illness progresses further.
We continue to be deeply appreciative of the thoughtfulness that people have been showing to dad and the family. We have received incredible homemade pies and breads, as well as wonderful jams, music and cards from around the country and beyond.
Today has been a busy day. Dad had a visit this morning from a hospice nurse named Helene. She went over all of the details about hospice procedures with our family, looked at dad's current medications and discussed a variety of ideas to further alleviate his discomfort. It is an enormous relief to us that all of dad's care will now be handled under one roof rather than juggling prescriptions and recommendations from multiple doctors.
Helene will not be dad's primary hospice nurse, we will meet Nancy later in the week, but today's appointment was very helpful. One of Helene's suggestions was that we get in some oxygen right away to help address dad's increasing shortness of breath. She arranged for that to be delivered this afternoon, and already dad is feeling better and breathing easier.
Today has been fairly quiet. Dani & Martin went for a walk down the inter-urban, Dad took a nap after lunch, Mom worked on her class. Martin and I spent some time playing guitar and telecommuting (the wonders of modern day technology that allows me to spend so much time with my family while still seeing to the needs of my job continue to amaze me!)
As some of you may already know, Martin has been filming interviews with Dad. Talking about background, churches, family and various memories has been a great chance to record Dad's history and finally get some of the stories we grew up with in a more permanent form. Today Nicole and James both got a chance to "interview" Papa. Allie has been hiding out upstairs in the attic. She is getting over a bad cough and is doing her best to keep the germs away from Papa! She's been a trooper, because it's hard to stay away from the center of activity, but she's been a great sport.
Yesterday was a big day with church, then going out to lunch afterward with Dad's sister-in-law Alice, nieces Connie & Amy & grand-niece Emily. Then, last night Mom & Dad hosted book group. And Dad defied the image of an ailing patient as he discussed the science and spirituality of Bill Bryson's "A Short History of Nearly Everything" (his choice). No wonder a nap felt good today!
Dani and James are mostly recovered from jet lag (although I think James has bounced back faster than Dani to be honest). Tomorrow, Martin heads home for a couple of days and Dani, Mom & I are taking the kids to lunch at the Tea Room.
Family time is precious and appreciated; even when we do nothing more than sit quietly together ignoring each other as we each work on our laptops.
Throughout my life I have met people who have become spiritual friends. Some of these have been long personal friendships over years. Others were more brief but quite unforgettable. Spiritual friends are people who share some deep, intuitive connection. I am fortunate to have a number of such friendships and, although we seldom speak of the nature of our relationship I believe that most recognize it.
Through the Bellingham Cancer Center I have been working with a wonderful volunteer who practices a form of healing touch. Elizabeth places me on my back on a comfortable table, provides pillows for comfort, an eye pillow to block light, if I wish, and puts on some soft music to mask noise from outside the treatment room. As I relax my body and mind, she may ask what agendas or goals I have for this session. Then in the gentlest way she will lightly touch me, beginning with my feet and slowly moving to different parts of my body. Last Friday my goal was to integrate my body, mind and spirit.
Healing touch relies, in part on the ancient Eastern ideas of chakras, or energy centers at seven locations on the body. As the session began I used a relaxation technique which works well for me for physical calming. I imagine that my body is sinking into the table beneath me. As the body disappears I move more deeply into meditation.
Throughout this session I was very much at peace and seeking to be open to new information from that realm which is usually clouded by intellect. When Elizabeth touched the area of the heart chakra in the middle of the chest, I suddenly realized that my body seemed no longer sunk into the table but floating. As she moved to the head chakra, the image was that the whole of my being was contained in that small space. And when her hands touched the top of my head, the seventh chakra, I had a surprising insight. I thought "this is the way out". It was as though the physical birth canal was replaced at death by an exit point.
Following the session, Elizabeth pointed out to me that the chakras have been correlated with the seven sacraments of the Christian church. The heart chakra related to the sacrament of matrimony. It was when my relationship with Marilyn was touched that I felt my body floating rather than sinking. The head chakra is related to the sacrament of holy orders or vocation. In my vocation, my whole being seemed to become of a piece. And the last chakra is correlated to the sacrament of extreme unction or dying.
Somehow the images have been very comforting to me. It is as though we begin as biological beings in birth and grow into spiritual beings at death. There seems to be a wonderful process for entry into life and an equally wonderful avenue for exit.
I am grateful to Elizabeth for becoming a spiritual friend on this important part of my dance.
Today I look forward to starting Hospice care with the visit of a hospice nurse. This decision requires that we agree to palliative care and forgo any therapies which would be considered aggressive treatment of tumors. It also requires that I shift my medical coverage from Medicare to Hospice Medicare. That program provides supportive services, drugs and any equipment needed for my care: hospital bed, commode, wheelchair, etc. It is an important step and one I am ready and eager to make, mostly because the presence of the hospice nurse will assist us in balancing medication, addressing pain, and interpreting the progress of the disease.
Prior to contracting with Hospice I have been getting a injection of a drug to stimulate the red blood cells and counter anemia. These injections every two weeks must be taken at an infusion center to qualify for Medicare coverage. Since this treatment is unlikely to be covered under the Hospice plan, we decided to make one last appointment for an infusion before signing on with hospice.
I made an appointment with my hematologist, Dr. Nestor, for an exam and the infusion last Friday. Friday morning I enjoyed a complementary healing touch session with Elizabeth, a volunteer at the Bellingham Cancer Center. This has been a wonderful experience about which I will write more later. She noted that I had lots of family arriving that day and wondered if I really wanted to have an infusion before they came.
Later that morning, Marilyn and I met with Dr. Nestor (Late, I missed my first appointment because I relied on my memory rather than my calendar — a clue that my memory isn't always firing as it once did). We discussed the advantages of the infusion and found that it worked best when given over several months to advanced prostate cancer patients but would probably have little effect on my bone tumors which are caused by the renal cancer. The bone cancer isn't my primary concern anyway since at this point the liver has the greatest tumor mass. Side effects of the infusion were minor but could include a day of flu-like symptoms. We decided with the doctor's help that the cost-benefit ratio didn't support an infusion at this time.
As Marilyn and I drove home from the Madrona Infusion Center we passed Dairy Queen. Marilyn turned in and we both had an infusion of a peanut butter parfait instead.
Our visit with family over the weekend was wonderful and I was feeling good and enough energy to enjoy some meals out and long talks.
When I began this blog I used a line from a favorite Gerard Manly Hopkins poem God's Granduer.
Because the Holy Ghost over the bent
World broods with warm breast and with ah! bright wings.
Bright wings has been, for me, an image of the Spirit throughout my faith journey. Many of my liturgical stoles have a butterfly design. I am sure Hopkins pictured a dove, but for me the creature with the most extravagant coloring is the butterfly. These wings were the beautiful image that first defined the theme of this blog.
Over the weeks the, theme here has shifted to a image of dancing which is a both a gift and something of a mysterious coincidence. (Of course, I am one who does not believe in coincidences.) You can track the emergence of the metaphor by reading the blog from the beginning by going to the Start Here Page.
The theme of dancing keeps imposing itself upon my journey and recently took a new twist. Martin told me he thought I would enjoy Madeline Peyroux' new CD, Careless Love. During a Starbucks stop we saw the CD and Jeni bought a copy for me.
We have listened to it dozens of times, especially to the first track, a Leonard Cohen poem, Dance Me to the End of Love.
Sudenly these unfamiliar lyrics have become an anthem for my journey adding to the sense that I am being guided, not only by the Spirit but by all of you who are part of this journey with me. Here are a few of lines from the song:
Dance me to your beauty with a burning violin
Dance me through the panic 'til I'm gathered safely in
Lift me like an olive branch and be my homeward dove
Dance me to the end of love
. . .
Dance me to the children who are asking to be born
Dance me through the curtains that our kisses have outworn
Raise a tent of shelter now, though every thread is torn
Dance me to the end of love
Dance me to your beauty with a burning violin
Dance me through the panic till I'm gathered safely in
Touch me with your naked hand or touch me with your glove
Dance me to the end of love
The Bellingham Herald changed the location of its Eaaster Story on my journey. The new location is here. If it changes again we'll try to keep a source current.
I know this blog has generally been upbeat, a mood which does not reflect the attitude of everyone who reads it. You probably wonder if there are some hard times for Marilyn and me. The answer is yes, but the river of grace is so full that they seem like mere ripples. Let me list some of the discomforts and we will promise to keep you posted as they grow.
Pain: I have very little pain. I am taking 2.5 mg of Methadone per day (half of the smallest dose). To this point it has managed two areas of discomfort very well. The methadone seems to have few side effects. I have a bone ache in my left sacroiliac joint and in my right shoulder. If these become too uncomfortable I use a heating pad and a couple of Ibuprofen. That generally works well. I'm also taking some steroids (please don't report me to the baseball commission). The steroids have an effect on sleep so I am using Tylenol PM at bedtime after a month or so off sleeping medication. There are more effective options when that doesn't work.
Appetite: I have been eating normally, well almost indulgently for a couple of weeks and hope the appetite continues to be good. Do you know that Ben and Jerry's Cherry Garcia is available in little individual cups with spoon inside? I'm hooked and fear that it is a test market which will soon go away. For a few months I have craved a fresh orange each morning before breakfast and with the great oranges available now, that is a wonderful way to start the day.
Weakness: One of the main downsides of the disease is that I have very little stamina. If I walk upstairs for something I need to sit down for a few minutes to catch my breath. When walking, the slightest incline winds me. I can't just jump up and do something without planning the moves and making allowance for catching my breath. I suspect this will become worse and it will be difficult for me to get up and down stairs . . . but we'll cross that bridge when it comes.
Emotion: From time to time, Marilyn and I have weepy mornings as we think of the things we love to do which will no longer be possible. No wandering off in the car for a few days to see the world and let our whim determine our destination. No trip to Singapore to see Dani, Charles, and James. No conversations between a couple who have always been one another's best friend. These are good times because there is sadness in parting, and because I can't be here for Marilyn in the future. Somehow, crying together seems to be a holy moment of sharing our deepest love. Today Martin sent me a mock-up of the bulletin for my Celebration of Life. I cried when I saw the colophon on the back. It was the Wine Cellar Press which was my colophon years ago when I had a little private printing press as a hobby.
Now set those present discomforts alongside the gifts which keep flowing into our lives. Two flower arrangements this morning, two lovely cards, several emails and the constant loving response to the blog.
This Friday my sister-in Law Alice, Nieces Connie and Amy, and grand niece Emily will arrive from across the country for a short visit. Dani and James fly in from Singapore Saturday for two weeks, Martin will be here as well and Jeni and the granddaughters. Later this month California friends will be arriving and in May my sister Pat and niece Mary will arrive.
Life may be diminished but it is still full and blessed.
This morning a Hospice representative filled Marilyn and me in on their services. I had no idea how comprehensive or flexible our local Hospice is. They promise to be patient driven and offer a range of services from skilled nursing care to bath aid. It is reassuring to me to know that I will have competent and caring guides through the process of dying.
I am reminded of ee cummings poem
Death is fine
But dying; o baby!
Death is the natural and expected end of life. The big question is, what is it like to die? What is the physical and emotional process? I believe that Hospice will be very helpful in explaining to Marilyn, our family and me what is likely to happen and what to look for.
I am grateful for such a resource and feel comforted to have professionsl hands attending me in the coming weeks or months.
Yet another reason to be grateful to the goodness of others and the benevolence of the the Spirit.
My father, Dewey McClellan, was born in 1898 and died in 1972 when I was 35. For the last years of his life Dad suffered from Parkinson's disease, arterial sclerosis, and dementia. Several years were spent in a convalescent facility. Our family lived a couple hundred miles away from my hometown, Carlsbad, California, so we didn't get down to see Dad too often. Martin, who was three, always wanted to visit Grandpa with me.
My vivid memory of this formerly robust man was how thin he had become. His frame was almost devoid of flesh and he seemed terribly feeble. One day I was shaving Dad and it occurred to me that I was completing a cycle. My father who bathed and changed me when I was a baby was now receiving my attention as he receded into a childlike state. I suspect the same will be true of me at some time in the future.
But beyond that, my body which once weighed 210 lbs now trips the scale at 165 lbs. As I look at my frame in the mirror, it is my father I see. A recent bone scan provides a picture of this weight loss. I'll place it on the Continue Reading page in case there are those who would prefer not to dive so deep into medical imagery.
Since I am not a radiologist, I can't read this image. I suspect dark spots on the ribs are signs of problems and I think I can make out an area in the lower right lung with fluid in it. Although this may seem macabre to some of you, I am the kind of person who wants to know exactly what is going on in my body and I find it fascinating, if a little confusing to try to read the results of tests.
Last night didn't allow much sleep. On the other hand I finished The Curious Incident of the Dog in the Nighttime and listened to Braham's German Requiem. Much of the time was spent in a wash of sheer gratitude and a concern that I won't have time to send a proper thank you to so many people.
You are all so generous that I am lifted by your expressions of love. One morning there were two gifts left on the doorstop, a bag of warm bagels and a lovely book Furry Logic, later a tape of favorite music arrived, and the mail brought cards and letters including a poem from someone I have never met. Your notes, on and off the blog, cards, phone calls, brief visits, letters and assurances of your care are a balm and leave me so grateful and in your debt that I cannot but fail to thank you enough.
And, because I can find no explanation for such generosity and love except as an expression of God's love, you bring me close to my Creator. As my body grows weaker, my spirit is uplifted.
Karen Riseland Frasier who was a high school student when I arived in Bellingham, wrote a beautiful poem and sent it via email. I asked her pemission to share it here since is is so meaningful to me
Left behind we watch
As you drift away
Unable to comprehend
How you can smile
At a time like this
Your eyes are on the heavens
Ours are on the horizon
As we look forward and see
Emptiness in the space
That you now occupy
Your consciousness expands outward
Into the universe
Our consciousness shifts inward
To probe a wound
Raw with your leaving
We wonder at your peace
In the presence of our pain
Unable to understand
Your smile of compassion
At our turmoil
Lost in our physical selves
We never take the time
To experience the process
Of another
Becoming Spirit
And when we do
We wrap ourselves in grief
Instead of bursting with the Joy
At the Grace of a loved One
Returning Home
Following the Bellingham Herald's Easter article about my illness and blog, there have been many visits, cards, phone calls, and blog entries, and other contacts from people I haven't seen in a while or do not know. Except for two contacts which offered cures for cancer they have all been positive.
This is one of the gifts of modest notoriety. To the extent that I can share my journey I am pleased for the publicity.
This morning I was amazed to find that I was mentioned in the first editorial of the Saturday edition of the Herald.
I was surprised, a bit embarrassed to be the center of attention again, and honored to have yet another opportunity to share these days of my journey with others.
Each day brings wonderful surprises. Thanks be to God.
Dying is an art but death has definite business connotations. One of the things Marilyn and I have been trying to do is to address those tasks which will be important at the time of my death.
First we updated our wills and living wills. It was embarrassing to us to realize that when our previous wills were made we only had two children. Since our youngest, Martin, is celebrating his 36th birthday today you can se how out of date they were. Everything is now updated and a community property agreement is included.
Second, we are making sure that Marilyn is the primary name on all of our utilities, bank accounts and credit cards.
Third, we have made mortuary arrangements. Meeting with a representative of Jones Moles was a rather pleasant experience. I want direct cremation, no embalming, no viewing (if you want to see what I look like you'd better get by before I leave), a cardboard container and the ashes held in a plastic box until our family decides what to do with them. This wouldn't be everyone's choice but it is what our family and I desire. We found the fees for service to be reasonable considering all the services and consultation the funeral home provides.
Fourth, I am working on my Celebration of Life. I know this might be a bit of micro managing but who could do it better than I? There are some music and other elements I would like to be part of the celebration. Fortunately, Cindy Bauleke is familiar with my passion about graphics and is gracious about accepting this request.
I am sure that tasks remain, but it feels good to cross them off the to-do list, knowing that they would be far more difficult later.
