A real life horror story that was difficult to read but worth the effort. At times, the descriptions of Atkins' suffering along with the outrageous mistreatment she received from health care professionals affected me physically. I felt queasy, squeamish, agitated and pained. I was often incredulous that so many doctors and nurses could watch a person suffer like Atkins did with such callousness and indifference. Sometimes it was so unbelievable I questioned whether her depictions were somehow skewed, exaggerated or otherwise unobjective, but I feel I have to give her the benefit of the doubt, because she does also recognize those times she got proper care. I thought her observations and ideas about medical ethics were well-argued and would have liked to hear even more about that issue from her perspective. The author's courage and will to live despite everything she's suffered are inspirational.
I also enjoyed Hodges' critical commentary/afterword and think it's a very important component of this book. He presents solutions to the problems Atkins faced that would really help if they were implemented by all healthcare professionals. Unfortunately, I don't have much hope that many doctors and medical institutions will actually make the time and effort to put them into practice. Doctors are humans - busy, stressed, and flawed - and in my experience most of them will always find reasons not to do the extra work required to be of better service to their patients. They have so much on their plates already, the challenge is to convince them that making an effort to improve their communication, mindset and empathy is in everybody's best interest and, ideally, not optional.
As a person who also suffers from a complex, chronic illness with no physical markers and inconclusive diagnosis (though less life-threatening), I could relate to some of Atkins' experience. Parts of this book touched close to home, particularly the descriptions of invalidation, the struggle with self-doubt and feelings of powerlessness. The fact that she accomplished so much personally and professionally even while being so ill and immobile makes it even more incredible and enraging to me that so few people believed she had a physical, biological illness. I can only dream of having that muchr determination and discipline.