Louis R. Caplan, MD
Stroke, paralysis, disability, handicap--these are all foreign words that belong in medical books. Strokes happen to other folks, old folks - not to me. But strokes can happen to anyone. Strokes affect not only the individual but the entire family and constellation of that person. What is it like to have a stroke at the prime of life--at the top of a fruitful career? Out of the Blue is the story of one individuals stroke. Although there are now lots of illness memoirs about an individuals struggles with various diseases, this book is unique in many ways. It is a first-rate read.
At age 46, Bonnie Sherr Klein had the first of several devastating strokes. The strokes evolved over a few short months and ultimately left her almost totally paralyzed and unable to communicate. Despite her paralysis, she could see, hear, and understand what was happening to her and what others were saying. Before the stroke Bonnie, an American- born woman living in Canada, was immersed in the 3 Fs--family, feminism, and filmmaking. She was a very productive and successful maker of award-winning documentary films that had feminist themes. She was the mother of two children of college age. She unravels the story of her strokes, the reaction and effects of her strokes on her husband--chief of family medicine at the hospital where she sought medical care--on her children, her colleagues, and her friends.
The story is told by Bonnie but she cleverly intersperses the comments and thoughts of all of the people who were involved, including her family, doctors, and filmmaker friends. She quotes verbatim from the hospital charts, and reviews the thoughts and concerns of the treating doctors as well as her doctor-husband and her children in their own words. The book reads like a film documentary, probably in the style that Bonnie would have used were she making a film. There is a Rashamon-like feeling that emerges in which the reader finds truth probably somehow emerging from the different descriptions and views expressed.
Bonnie shares her observations, her worries, her terrors as she gradually but inexorably becomes locked-in--that is paralyzed to the extent that she becomes unable to communicate her needs and wishes. The hospital care is described in detail. Myriads of doctors saw her but the diagnosis remained unclear and there was no coherent plan of action. The frustration at the inefficiency and inhumanity of the process jumps from the book. Even Bonnies husband, a respected chief-of-service at a major teaching hospital, who spent nearly full time guiding Bonnie through the labyrinths of her care, was insufficient to really make the system work well. His frustration is palpable. What would the process be like without a guiding family member who was a physician?
The diagnosis finally becomes evident after an MRI scan. Bonnie has a very rare cause of stroke. A congenital vascular malformation (a cavernous angioma) located in her brainstem, in the medulla oblongata. The grape-like cluster of blood vessels had bled several times and involved the major motor pathways emanating from the brain that controlled movements of her mouth, throat, and limbs accounting for her paralysis. The bleeding malformation was dangerously close to vital centers which controlled consciousness, and heart and respiratory function. A very skilled surgeon was found at another Canadian hospital who was able to remove the malformation.
Bonnie, her husband and children, and her physicians describe Bonnies slow and tortured recovery. The road back was long and hard. Bonnie struggled through periods of anxiety, agitation, panic,and difficulty sleeping. Many of the nurses and hospital personnel were indifferent, unsupportive, and uncaring. The portraits of the night nurses and the nurses who work in the intensive care units are the least attractive of any of the personnel depicted in the book. Psychiatric medicines were prescribed and overused in lieu of reassurance, supportive care, and understanding. Rehabilitation is a major struggle with many ups and downs. Physical and occupational therapists were for the most part very encouraging and supportive, but Bonnie had to constantly battle negative prognoses given to her. Bonnie is at first very uncomfortable with her new status as a disabled person who has many limitations, instead of the old triple-threat devil-may-care Bonnie. Very gradually she comes to grip! ! s with her new persona and begins to understand what it means to be disabled. She begins to see how society in general creates barriers for people living with a variety of disabilities.
Ultimately she is able to return to her filmmaking and her advocacy work. She is able to accept her new status. She becomes a vigorous advocate for the rights of disabled individuals. She works hard to tell her own story that it may give courage and understanding to others. She is currently artistic adviser to Kick Start, a Festival of Disability Arts and Culture, where she is helping other artists with disabilities to share their stories.
This is a very well-written, no-holds barred account of a familys struggle against a serious disease that hits out of the blue. It is a battle against the disease, against an inefficient and often uncaring medical establishment, against a society that worships youth, beauty and agility and has little respect for age and infirmity. It is a book about stroke and the ravages of paralysis. It is more than anything a book about a very complex and capable individual, Bonnie Sherr Klein. Bonnie often turns the mirror on herself showing her strengths and weaknesses. She lets it all hang out. The pathos is balanced with a large quantum of humor; laughs are generously interwoven with the tears. Bonnies sense of fun and humor shines through her illness, her struggles, and her interpersonal relationships.
The book is a must read for any family with someone who has had a stroke or any other serious illness. It should be required reading for physicians and nurses, especially those that care for patients with neurological illnesses and handicaps. For anyone it is a very good read.
