This book was just okay. The idea of ALS, the idea of a woman my age being derailed so completely and unexpectedly, forced to watch herself disintegrate, knowing that her family will go to any lengths to care for her and the guilt that brings - all of that is tragic. I felt the tragedy of the situation, but the emotion was my own, not brought on by the writing. This was a major disappointment. I had picked up the book hoping it would hold a great dramatic piece for speech competitions (I coach), but the writing is fairly flat. All the blurbs on the book talk about what a great person Jenifer was, how funny she was - and I'm sure that is true, but the book doesn't convey those things.
Speaking of the blurbs, they were by some pretty big names - Sarah Jessica Parker, Christopher Reeve, forward by Katie Couric...Jenifer had a lot of great contacts, both before and after she started her foundation to fight ALS, and their names are liberally peppered throughout the pages. Listed out at times 5-6 in a series. I'm not sure if the purpose was to thank the stars who stood by her side, or to magnify the importance of Jenifer's life by her nearness to these figures, but I found it distracting from what should have been the emotional heart of the story. I also found it disrupted what I thought to be the overall idea - Jenifer was any woman, in a place in her life where there seemed more left to do than done - she was making plans and working to achieve them. But she was never able to. Encounters with the rich and famous only served to undermine the idea that Jenifer was "any one of us". The book can't seem to decide if she was average and we should all see ourselves in Jen's plight, or if she was extraordinary and we should all be in awe.
One element that seemed glaringly absent was talk of money and insurance. Jenifer quits her job when she becomes too exhausted to navigate it any longer, and yet still is able to meet with various doctors across the country, pay for her own (multi-room) apartment in NYC, have what is eventually round the clock care...it doesn't all add up. As someone who has had a few family medical crises and who has pretty crappy insurance right now (though is luckily healthy), this is a major concern that feels suspiciously missing from Jen's struggle.
Both of these are probably true in the minds of her loved ones, who finished and published this book after Jenifer's death. I'm sure they did it to honor and remember her. I'm guessing that Jenifer's own words were probably too understated in their views (a lot of her friends say she was witty and joking about her situation to the end), too nonchalant to portray the greatness they felt at being a part of Jenifer's life and the sadness they felt at losing her so slowly and utterly aware.
I also felt strange about the foundation she & her sisters started. While I obviously support the idea of researching and aggressively searching for a cure or treatment, the attitudes Jen & her sisters had at starting the project seem...pompous? Can you say that bout a gravely ill person? The 3 were unhappy with the news and diagnosis, and turned their attentions to fighting the disease - but they never seemed to target their hatred there. Jenifer talks repeatedly about wanting to attack her neurologists - even the ones that were giving her good care - but that seems blatantly misplaced. The neurologists didn't make her sick. They gave her the diagnosis, they did not give her the disease. As a former science nerd, I felt a bit defensive of their attack on scientists - yes, research may be solitary and maybe a communal process would be helpful at times, but scientists working to find cures should not be blamed for not finding them. The audacity, mostly of Jen's sisters, to decide they knew better was a bit unsettling - though, if they are right or aren't, there is little harm in trying. I also found the wording of Jen's testimony to congress to be over the top, though it may have been taken out of context. She blamed the government for not finding a cure, saying they were denying her pursuit of life, liberty, and happiness. This is ridiculous. The government did not give Jen ALS. They did not even create a situation in which she could have been protected but was not. I am extremely liberal, but I do not believe the government is charged with curing all disease. It would be nice, and I basically support NIH and other public research, but I think the rage was wrongly focused.
The book documents a life, but it is not a personal journey. Personal moments are shared here and there, but it is more a document of history - this person lived, these are the facts, Jenifer Estess was here. It must have felt important to those in the story to make that known. We are moved to tears by the situation, but not by the writing. At that point, the specific life involved doesn't matter - it is generic. The final pages, which I thought would finally bring me a great emotional impact, a bonding with Jenifer - were unfortunately...just boring.
To end on a positive note - it was a good balance to read this at this time in my life, when I am terrified of not having enough money to make ends meet as I embark on my new life as a stay at home mom, when I am lamenting "difficulties" that are nothing compared to ALS - a little perspective doesn't hurt.
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