The
goldfish went on vacation: a memoir of loss (and learning to tell the
truth about it). Patty Dann. Trumpeter Books. USA. 2007.
ISBN - 13:978-1-5030-428-0. $18 (USA). $23 (Canada). 166 pages.
The author of this slim volume, Patty Dann, married a Dutch immigrant
in 1990 who worked in the USA as a photo archivist and researcher. Both
were Jewish.
In 1996 Patty and her husband Willem adopted a baby from Lithuania who
they named Jake. Patty was 42 years of age and Wilhem about 45.
In 1999 when Jake was three Willem developed a glioblastoma brain
tumour.
Patty is a writer and also conducts writing workshops, whose
participants are mostly over 50 years of age and are often individual
sources to her of diverse life experiences and great wisdom.
This book is a collection of mini-essays by Patty about her early life,
her journey with Willem, and her life as a new widow. The value of this
book is in the insights it contains of how one spouse travelled the
journey with her husband as his personality changed and his physical
condition deteriorated, and how their adopted son Jake coped with these
changes, including Willem's death.
Just as the journey for each person with a brain tumour is unique and
personal, so also the experiences and reactions of their loved ones.
Books like this are invaluable. They provide pointers for those
commencing a journey that can initially be terrifying and unknown.
People react different to the diagnosis of a malignant primary brain
tumour in their loved one. For many the initial attitude is one of
extreme optimism and hope, and even denial. The reality of the prognosis can
creep up on you, either through study and reading, conversations with
the medical team, or the progress and death of other patients one
encounters on Internet discussion groups or at meetings of a brain
tumour support group. The aim is to maintain "realistic hope" and not abandon hope altogether.
Willem himself was not very interested in his tumour or its outcome
"... even though it has an interest in me" (page 18), however, Patty
obviously experiences 'anticipatory grief', looking ahead to Willem's
death and what life will be like as a widow and a single mother.
I suspect this is a course common to many spouses and could be more
proncounced in the world of brain tumours than in other cancers. The
often intense nature of the brain tumour journey for the patient and
their family warrants a special response by the treating physicians and
allied staff who deal with them.
Young Jake is also prepared for his father's death and for the time
when Willem will no longer be able to carry him on his shoulders - a favourite treat. He
meets regularly with a child counsellor (Sallie Sanborn, who
contributes an Afterword to the book) and through his playing with
toy cars she can guage his emotions, as does Patty by observing Jake's
actions in the home environment.
This book is full of clues as to what one might expect and honestly
conveys one person's story of how she and her young child reacted
during the journey. For many readers it will validate their own reactions.
The literature about the brain tumour journey has grown in the past
five years. In 2000, when the brain tumour e-mail discussion groups
were emerging as major forms of support for a dispersed and minority
population, there was an on-line book called "Beyond the road's end" by
Mary Catherine Fish which I am sure was downloaded and read by many
spouses of newly diagnosed glioblastoma
patients. The book is no longer available for free download. Ms Fish's
website is not working but there is a summary of her story here.
The book detailed her husband Tom's five month journey and was quite
harrowing. I started reading it to my wife in the early stages of her diagnosis but stopped when I realised
it was too 'close to home'. An alternative source of insights by someone of about the same age as my wife was Micki's Journey, from which we took the title "Marg's Journey" for my wife's on-line diary which she would read over my shoulder and suggest a few changes here and there.
Since the Beyond book there have been other books including "Shadow in tiger
country", Tim Arthur's account of his wife Louise's last year of life
with a brain tumour and BBC journalist Ivan Noble's two year on-line
diary of his journey, which was published in 2005 as a book "Like a hole in the head".
Greg Crooks has also written of his family's experiences with their
young son Sean when he developed a brain tumour and subsequently died.
I have uploaded a review of Greg's book "Can I Take My Panda Daddy?". There are also a multitude of on-line diaries or "blogs", written
either by patients or their relatives. I have tried to identify these
and have created hyperlinks to seventy of them on a website
that I maintain but they tend to be ephemeral.
Oh yes, the title "The goldfish went on vacation", is based on a
mother's explanation to her child of what happened to his pet goldfish
when it died.
This book will be of particular interest to those who have commenced
the journey with a loved one, or have experienced it, both men and
women, but its real contribution is in the insights it conveys of the
reaction of a young child.
The Hamilton Spectator newspaper has reproduced one of the chapters which may be useful for those who wish to obtain a 'feel' for Patty Dann's book.
Denis Strangman
Chair, IBTA
Canberra
28 January 2007
