BEYOND THE HIGH BLUE AIR

A family’s tragedy is revealed in agonizing detail.

Spinney’s moving and painful debut memoir recounts the devastating injury sustained by her son, Miles, a handsome, bright, and adventurous 29-year-old who crashed while snowboarding in Switzerland. Rushing to his side, the author and her family discovered that bleeding and swelling of his brain had compressed his brain stem. He fell into a coma and was hooked up to myriad tubes and a ventilator. Trying to be responsible, Miles had worn a crash helmet: it likely saved his life, but, Spinney came to realize, instant death might have been preferable. After a few weeks, he was weaned from the ventilator and given a tracheostomy; a titanium plate was affixed to the top of his skull. Food, sterile water, and multiple medications flowed into his body through tubes. From the hospital in Innsbruck, where he was treated with exemplary care, he was flown back to London, first to an intensive care unit, then to a leading brain injury hospital, and finally to a long-term care residence. Every move proved wrenching for all. Despite a host of therapies (occupational, physical, speech) and treatments, Miles made hardly any progress, officially diagnosed as MCS: minimally conscious state. In each new medical facility, Spinney found herself forced to advocate aggressively for her son’s needs; when she encountered a doctor who considered Miles’ point of view, she was “flooded with relief.” The author chronicles the next four years, during which she, her husband, Ron, and their other children upended their lives to support Miles, constantly revising their concept of hope. Suffering endless “excruciating pain, humiliation, anger, misery, frustration, loneliness, boredom,” Miles, the family reluctantly decided, would rather be dead. But ending his life was legally impossible under British law, which reserves that option only for individuals in a persistent vegetative state. Ron’s diagnosis with cancer and ensuing physical ordeal offer an additional perspective on the limitations and consequences of medical intervention.

An engrossing and wrenching memoir.