Tuesday, November 3, 2009
Sunday, October 18, 2009
Thursday, October 15, 2009
The health professionals impacted upon our journey, with sign posts, with guidance and with personal impact. Self-leadership has to adapt to the realities of circumstance and the context of an organization or personal interaction. Health professionals impacted through:
- Meetings and communications
- Nurse-patient and doctor-patient interaction
- Technical skills
- Vision accord and vision dissonance
The ‘picture’ we built up led to our setting of goals which were determined, in part, by the health domain, such as transfusion days, and others which were less tangible, such as our wish to live life to the full and enjoy each day as deeply as possible. A goal such as giving special clothes, jewellery and possessions to family members led to the structures and processes by which these would be achieved. A goal such as having a last special holiday together led to the structures of planning and booking and then the process of selling a collection of New Zealand art to fund the holiday. Thus we went to Rarotonga.
Heart of the Grove in Rarotonga
My wife is swimming in Muri reef waters
her eyes are aglow in a give-no-quarter gaze
as she shakes water from her wondrous hair.
Leukaemia is a bastard of an enemy to fight.
I hate the obscenity of combat with an unseen enemy
and the blindness of a blood test next week that cannot
recognise the gift of this woman rising from the sea
I taught myself to cook and began assembling 50 day menus from Aroha’s mesmeric cookery books – Italian, French, Julia Child, Alexander, Roden…she would select 30 recipes and I would work through them – with none of her flair but with line-by-line determination! And so I would prepare the table, the wine and then wash up. It seemed a very small contribution to my wife who had gifted me with her hours of cooking each week till then. The structuring of meals became a new delight.
Occasionally there would be moments that caused the positivity processes to falter. I recall the night we lay in bed and Aroha said softly, gazing at the stars, “Soon I will be a star up there.” Another time I had written a brief poem after telling her of boyhood farm tasks and she whispered, “I know how that feels.”
Boy behind the plowThe amazing and sustaining truth was that self-leadership, our mutual acceptance of how we would live with leukemia, led to an even more enduring closeness. The inexpressible love that somehow became expressed with a look or a hand-clasp imbued every hour of every day. We knew that our slow coming dark was remorseless but we continued to live in delights. At times delights became muted in realities of transfusions, pain, the loss of our future, Aroha never seeing Kate and Daniel’s child…
behind the plow
by barbed wire wind
until his eyes
bled like tears
Love Song for Aroha
When you touch me lightly
a strand of wattle
stays the evening breeze.
When you smile at me
the green skins of flax
shiver deliciously at dusk.
And when you kiss my mouth
a night owl calls time
from a tracery of willows
the leading star
over slow coming dark.
One day, in spring, I planted seeds that Aroha would never physically see. Then our last summer came and passed and that lovely woman, ever a woman of grace, slowly made her way to the top of our hill gardens, where the soil was rich and soft and warmed …
The air quivers with self delight
In a home summer, it cannot help
This when vines lush with grapes
Loop on wire and the earth
Is painted brown with barefoot
Furrows grooved by a southern sky
And the deep boned soil is as
Tactile as one’s fancy
Where olive trees are so full of
Promise you could slice one open
And the green fuel would run this
Land forever, while time swings
From a suspended sun like a trapeze
Artist, giddy with enduring.
We learned and were blessed with so much through the past three years and, especially, the last ten months of the grace of grieving. We have learned that it is better for the spirit if we see cancer, not so much an attack upon our bodies but as a new opportunity for celebration of them. We became skilled, even gifted, in finding these celebrations and frolics (our specialist’s term for pleasurable activity) – be it a lunch out, coffee at Coco, cooking for the other, a note under the pillow, a DVD enjoyed together, making it to The Dell, the fresh rose by the bed, a letter, a phone call....and so much more from so many gifted hours...
We learned that you should not seek to have everything good that you want but seek to want everything good that you have. We grew to seek good in what lay in our grasp already. The good we had was immense and uplifting, whether it was the joy of each other’s presence, love of others, the rediscovery of a possession that became a refreshing joy, the garden arrays, the birds feeding...and as the pain and bruises magnified we became desirous of new messages passed through our touching fingers and feet, in cheek resting with cheek, and the utter joy of clasping hands - with mine always underneath because my hand now felt too heavy if resting on Aroha’s. Such was the pain she quietly bore.
We had bad days, particularly in October last year. Aroha’s farewells with Kate and Daniel and with Ben and Melanie, when she knew they would never see each other again, were absolutely distraught and cannot be recalled without an onslaught of tears. Conversely, Aroha had a wondrous day when Kate and Daniel arranged for her to receive the confidential note from the nurse who did their 20 week scan. Congratulations, the gender of your baby is...Aroha was the only one to know, even the parents did not. The same day she received a lovely email from my future daughter-in-law, Melanie, seeking Aroha’s opinion with information and pictures of three possible wedding dresses - I think. I wasn’t allowed to see it! Such times reflected our vision to make the most of our family. The processes were often not fully planned but fitted the vision.
The self-leadership journey became a voyage of self-discovery for both of us. Life goes on for each of those left in the void of Aroha’s physical presence. Life is short. Live it fully. Embroider the fabric of time with vibrant colour. Do not rent it with regrets. I know everyone whose life Aroha touched will always recall this woman. They will never see her like again.
SETTING AND SHARING THE VISION
Leadership and self-leadership are based upon the leader's philosophy. From the philosophy comes:
- Setting and Sharing the leader's vision, and
- The goals, structures and processes resulting from the vision.
We talked at length about the implications of Aroha’s terminal illness and the effect upon our lives, individually and together. This was followed by our decisions on what we saw as our vision for this period – seeing the illness as a gift of knowledge and gift of time. This would allow us, even drive us, to maximise the knowledge base so we fully understood what was happening and what was likely to happen, and to fulfil the increasingly rare months, weeks, days and hours. Our vision was to enjoy each other fully, as we always had, and to enjoy our family and friends and The Grove, our special home.
We were committed to the most positive belief we could have about the leukemia. Having each had the challenge of cancer previously we were committed to seeking the positive elements of our remaining days rather than fall into negativism. Aroha epitomised this day by day in remarkable smiles and statements. We underpinned our vision in these ways…
THE ATTITUDE CREED
CANCER IS NOT SO MUCH AN ATTACK UPON OUR BODIES AS A NEW CHALLENGE FOR CELEBRATION OF THEM.
WE SHOULD NOT SEEK TO HAVE EVERYTHING GOOD THAT WE WANT BUT SEEK TO WANT EVERYTHING GOOD THAT WE HAVE.
(Names of persons, have been changed. All content is factual and documented.)
Aroha, my wife, and I arrived in Ireland in January 2003 where I was to take up a university appointment. In June of the following year, we were on holiday in Villeneuve-les-Avignon, house minding for our dear friend, Dominique, when Aroha first felt abnormal tiredness and some pains. Some seven hideously painful weeks later, in Belfast, Aroha was diagnosed with acute myeloid leukemia. We flew home to New Zealand urgently to our whanau (family) and Aroha entered Ward 62 of Auckland Hospital, for her rounds of chemotherapy, at the start of September 2004. I had approval from the university work to with my students, electronically, from Auckland. After the chemotherapy was done I flew back to Ireland for the final semester of the 2004-2005 academic year (January-May). It was twelve weeks of slow-turning calendar days.
At the start of June 2005 we came home to The Grove. Although only 2% of patients in Aroha’s situation live for five years from the time of diagnosis the period until October 2006 was relatively normal. We had to avoid falling into weeks marked by counts of haemoglobins, neutrophils, white cells, red cells and platelets. Then, in that fateful month, with pains returning and her blood tests dropping, Aroha and I knew that the coming summer would be our last. We had a hideous and very private month and then met with Aroha’s specialist in November. She confirmed the collapse of our open-ended days. She expected Aroha to pass away by the end of February 2007.
Through 2005-2007 Aroha had weekly blood tests in our local town that were analysed in the nearest city and led to regular blood transfusions at Auckland Hospital, some hours away, and then at Rakehou Hospital, our nearest rural hospital, for the last six months. The transfusions, which kept Aroha going, had particular rituals which became an engrained part of our lives. The day before, we would check our list of: Walkman and three CDs; barley sugar sweets; fruit juice drink; water bottle; Hello magazine and another; the current book being read; glasses; a bag of soft sweets; cup and green tea bags; some malt biscuits; thermos; rug; tri-pillow; lunchtime pill for platelets and paper serviettes. On transfusion day there were wonderful nurses in Auckland’s Day Care (I immediately think of Miranda, Laurel, Janie ...).
In Rakehou the hospital was poor – the same spiders and grubby areas on each visit but it was only half an hour away and had wonderful laboratory staff (Bevan and Jackson) who never failed to be cheerful when painlessly taking Aroha’s blood. Nurses such as Lesley-Anne and Stacey Lewis were professional and compassionate. There were two ‘bottles’ of blood in early transfusions then three in later ones, necessitating stays of some six or seven hours for my darling wife who was unfailingly pleasant and courageous, despite her fear of needles. She had to enter the hospital each time with the knowledge of her virtually invisible lodes of veins that sometimes-clumsy doctors were trying to mine for a connection to the transfusion line.
In early August, Aroha found that the transfusions had become exceptionally painful and only improved her condition for one day. She made the decision to cease her transfusions. We knew that decision meant the descent would be inexorable. In the last weeks of August she desperately wanted to die and avoid excessive pain and the loss of her dignity. Now we entered the palliative world of Eslow, Mexoclopramide and morphine pumps. She spent much of each day in our lovely bedroom, which opened up onto a deck. Beyond the deck lay the winding valley of wetlands – shimmering rushes, stalwart pongas (tree ferns) and urchin manuka (teatree). Outside, in the garden over the path from the deck, the freesias were fragrant and bountiful. The daffodils Aroha had planted along the drive were vivid in their beckoning yellow. My brother, David, had come over from Queensland to stay with us and replanted the hanging baskets that Aroha loved to look at. Happy Jack came every few weeks for mowing and the grass accordingly patterned into compliance. Except for dark moments in the night Aroha was unfailingly strong.
Inside our home, life became a melange of visitors, cherished minutes of hand holding and muted talk together, snatched evening sleep breaks of 25 minutes (then up to a rare four hours near the end), commodes and wheelchairs. Aroha planned for her funeral. Some jewellery and clothes were given to nieces who came up from Auckland for a memorable weekend, pallbearers were finalised for each step of the casket’s journey, the church service hymns and songs were finalised and the service booklet printed with Aroha’s choice of photograph on the cover. It was the lovely one of herself and Zak, her much valued Border Collie, taken on the lawn at our small farm near Hamilton, in 1990.
The hospice nurses who came to our home, epitomised by Sandy Olsen, were wonderful, as was Aroha’s GP, Graham O’Neill. For the last weeks, Aroha’s sister, Marama, and David eased the daily routines and gave invaluable back-up. In the final days Aroha said she would only talk on the telephone to her special Oncology Day Care nurse in Auckland Hospital, Miranda, and Ben, my son, and daughter, Kate. On one memorable morning, Aroha struggled into the wheelchair for her only time outside in the final week. The sun shone. As I wheeled her inside, across the front doorway, the mizzling rain hushed onto her vibrant hydrangeas. She died two days later.
The end came with a Graseby pump maintaining a palliative supply of morphine that took away her excruciating pain. Around six in the evening of Saturday, 1 September, Aroha slipped away after a brief effort of straining…. In Stuttgart it was the engagement party day for my Kate and Daniel, her outstanding German fiance. It was three years since we came back to New Zealand. It was the first day of Spring.
In the extreme gift of intimate time I washed Aroha’s lovely body. It was the first time I had fully held my wife in my arms for some three months without her bruising or feeling pain. Knowing this was the last time we would be together I sponged those precious limbs repeatedly and dried and redried them. Her fingers and toes, which had become our single physical points of contact in her final weeks in bed, as any other touch was too painful, were soft and relaxed. Aroha was never other than lovely, in sickness or in health.
Five minutes after Aroha died my son called, earlier than usual, from Paris. My daughter called from Stuttgart. The undertaker came and took her to Kensington some thirty minutes away. He was compassionate, respectful and efficient. After he had closed the rear door on his hearse I went inside to tell Aroha what had been happening. I was at the bedroom door before reality washed over me. Next morning, my brother drove three of Aroha’s nieces into town, where he got the doctor’s certificate, then headed to Kensington so the girls could dress their aunt. She had selected the clothes and they had been hanging for days in our bedroom wardrobe…..
The iwi or tribal home, the marae, had Aroha for a day and then the iwi church, built by her cousin, rested her for the church service before the home earth of the hilltop graveyard received her. The eulogy, by her cousin, remembered her so aptly…
… When we recall Aroha’s qualities-there are many pictures and images treasured by each one of us. Her sense of fun and good humour, her compassion and thoughtfulness, her wholeheartedness and gentleness, her generosity and loyalty, her flair and creativity, her steadfastness and purposefulness ,her faith and reverence-and even her irreverence-always interwoven with love.
In these past months, all of us were able to visit, or make contact with Aroha. We had the opportunity to talk, to share the beauty of her home and garden which she loved so much, to sing, to share food and perhaps a coffee or sip of bubbly, to laugh, to cry and to pray. She treasured her moments with everyone. We know who we are, we know the relationship. We know what we saw in her and what she saw in us. We know the truth of love and friendship for a person who is actually there, not an ideal or a projection.
The decisions Aroha made regarding her treatment took courage to bring her through the troubled waters .In turn, she shared her sense of grace, brought us along with her and taught us the practice of acceptance.
I think that Aroha, as teache,r would now ask the question-mai I koinei ki whea? From here to where?
And Aroha, The Unquenchable Grace, would answer, taking the words of a philosopher: Everything that happens to you is your teacher. The secret is to learn to sit at the feet of your own life and be taught by it. Everything that happens is either a blessing which is also a lesson, or a lesson which is also a blessing. Live the happiness that is in your lives….
After the funeral at Kareponia, David and Para, Aroha’s brother, and I drove homeward, first stopping at the church so I could visit Aroha. It was peaceful, there was a hair-ruffling breeze and a glorious gold cross marked that one grave which mine will one day be adjoining.
The challenge and pain of terminal illness is, to some extent, mediated when the concept and practice of self-leadership is applied, even embraced, to assist the terminally ill person and their chief care-giver. This entry draws upon the definition of self-leadership noted in italics above and applies it to the situation of terminally ill persons and their carers. In the period of terminal illness the vision, goals and processes lead to positive coping, life enhancing and self-fulfilling aspirations. It provides personal examples of the application of the concept.
Although the development of self-leadership has been fostered in individual sports it has rarely been considered in a health context. One particular couple, when confronted with the wife’s diagnosis of leukemia, developed self-leadership roles that moved through the spectrum of establishing and articulating personal visions of the ensuing period to the minutiae of daily care. The concept provided assurance and strength from the initiation of a pain diary through to the final days and funeral. The personal account of the self-leadership voyage that follows the Background below is taken from a fuller account and is marked with three major perspectives that interweave personal narrative with the professional explanations of self-leadership and its relevance. These perspectives are:
- Setting and sharing the vision of the terminal period.
- The goals and structures and processes resulting from the vision.
- Key influences impacting upon the self-leadership journey