Brutal Honesty
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Available from: http://kohlerprojects.blogspot.com/ $18 USD + $4 shipping and handling
Deirdre Kohler is a young woman from South Africa who at 31 years of age in 2006 was diagnosed with a brain tumour. She is the mother of three children and the wife of James, who is an architect. As she writes at the start: “This book is about a journey … It is not a lesson”. It is the story of Deirdre’s journey with her brain tumour, her treatments, her relationships with friends and family, told through extracts from her web blog and email exchanges with an on-line friend Dan O’Connor who she connected with through the Internet and whose wife Sandy travelled for seven years with her brain tumour.
The title of the book comes from a message Deirdre sent to a Dr Nadvi seeking answers to many questions, including how one dies from a brain tumour. She asked for answers that represented “brutal honesty”. Dr Navdi obliges and is clear and direct in his answers but not necessarily brutal in how he words them.
Deirdre is an on-line person and when diagnosed she was busy with managing data and communications and had established a successful web business. She has now branched out into running a restaurant and has taken up painting, with some of her paintings being exhibited.
In this book Deirdre is quite frank and open about many subjects. She reveals, for example, that she has a nickname for her husband James which is “Bozalina”, derived in part from Bozo the clown. She also writes frankly about the physical inconveniences of her medical episodes as a result of the tumour and its treatment.
Deirdre has a committed faith and love for God and so there are sections of the book where she muses about her relationship with God and what part He is playing in her life. She writes “God is the source of life, love, provision, safety and faith …” but that doesn’t stop her from having a few arguments with God. Her mother, who lost another daughter at age 25 years, prays a lot, especially during Deirdre’s surgery. At page 172 Deirdre writes: “I am a person who enjoys logic and order, I don’t like vague answers (which seems to be a doctor’s favourite trick). I might get upset, but I would rather know what to expect. So I have always wished that God could send me little answer boxes from the sky, (not that I would always want to know the answer). This would give me a clear course … So, if my little box arrives at your house – please be sure to let me know. Until then I will have to figure it out myself."
She is sceptical of conventional medical treatments and approaches chemotherapy with great hesitancy but manages to endure it and the book concludes with a scan in 2010 showing that her tumour has shrunk. More recently on her on-line blog she reveals that another scan in February 2011 has shown further shrinkage.
Deirdre has now committed to establishing a brain tumour foundation in South Africa to assist brain tumour patients and their families. In this large country there are still inequalities in medical treatment with a greater priority understandably being given to the crippling communicable diseases such as HIV/AIDS. She has taken on a major challenge.
From Deirdre’s writings the reader obtains some insight into the African cultural environment. She uses the expression “TIA”, which stands for “This Is Africa”. If things don’t work when they should, or someone or something is missing or unavailable, then it is explained by “TIA”, meaning to say that you need to make some allowances for circumstances because … “This Is Africa”.
Some brain tumour patients will be interested in reading what a fellow patient has gone through and will probably find much that is common to their own experience. This is the value of books such as the one that Deirdre has written – a person is thrown into this strange world of brain tumours and there are not many people who you can talk with to compare notes about what they have gone through and what you might experience. Her emails to and from her on-line friend Dan illustrate his important supportive role in her journey, even though he has lost his wife to this terrible disease. Here is a woman in South Africa dialoguing with a man in the USA, whom she has never met, about how she is coping with her brain tumour. Dan’s emails are always encouraging and supportive.
Such dialogues are important in a less common disease such as brain tumours where the 200,000 people around the world who develop a primary malignant tumour each year are dispersed throughout every strata of society and in every country, from the youngest to the oldest, male and female. It is not as though you can walk down your street or to the nearest shopping centre and come across a dozen people who are travelling through life with a brain tumour. Younger people (say, in their 20s and 30s) are today making these connections via the Internet and they can be a source of great comfort and support. For the younger generation they will probably either displace or supplement the traditional support group meeting for people with cancer. When computer-mediated communication emerged in the 1990s there was talk about how it was difficult to convey nuances and meanings in internet dialogue but that has proven to be less of a problem.
The book is nicely produced with a number of photos of the author’s medical treatments, including a photo of the mask prepared for when she received radiation therapy. Deirdre has subsequently decorated this mask and it and others were recently on display at an exhibition in the Houses of Parliament in the United Kingdom, organised by BT Buddies, which was held to raise awareness about brain tumours. The book has an inexpensive price of $18 USD and is available through on-line purchase at the link listed in the review entry.
DS