He brings to light the plight of siblings and the struggle of late effects and survivorship- two stories that never get told- with honestly and a tone that rings true and also some very realistic and genuinely funny humor. A few parts are a bit cliched, but so is some of life. For writing a book that I feel like I could hand to a friend and say, "See, this is kind of what it's like" and then have a basis to discuss so many things with, I think Mr. Sonnenblick deserves a medal. It's even an amusing and good read if you haven't had any experience with the serious illness community (I think).
Illness as Metaphor by Susan Sontag- Very academic, and a little dry at points, but a very revealing analysis of the ways that cancer and other illnesses take on whole new levels of meaning in our society because of the things they get associated with and the nature and characteristics we ascribe to them. Great place to start debunking the stereotypes of serious illness, and to help open people's eyes to the things they may associate or believe that aren't actually true at all. Even while I was wishing it was shorter, I wished she was going more in-depth. It would be fascinating to do another update (she did another essay after the AIDS epidemic to analyze its metaphors) with all of the new myth, metaphor and mythology surrounding cancer. But, sadly, she died from MDS /leukemia. Maybe I could work something like that in to my thesis.
Everything Changes by Kairol Rosenthal- Very raw and honest interviews with young adult cancer patients and survivors (and ____s because some of them do not like the term survivor or are living with cancer as a chronic illness and therefore do not claim the moniker of survivor) that cover a huge range of topics. This is actually a good companion to the Sontag because it helps to blow the lid off many myths about cancer patients. For me personally, this was very much a take-what-makes-sense-to-you-and-leave-the-rest kind of read. Some of the people interviewed had views that were a little too dark for me, or disagreed with what I found to be true for me about my illness and survivorship. The differences in age meant perspectives and issues differed. I may come back to this one as some new things come up for me, like insurance and romance. She seemed to look intentionally for people who had non-stereotypical views, and there were bits of it that to me smacked of rebel-for-the-sake-of-rebellion mentalities and the complaint that "young adult cancer" doesn't receive enough attention, or doesn't have cure rates high enough, or doesn't have doctors catering to their unique needs always makes me a bit mad. When was the last time an Aplastic anemia website was featured in TIME magazine? Yeah, that's what I thought. You have whole charities devoted to you. While I'm sure the individual experiences of patients may have been difficult, especially in practices or with diseases more commonly associated with older people, I can't dredge up a ton of sympathy for their claims of being "undeserved". I thought it was really great that there were very specific and already vetted resources listed at the end of each chapter that pertained to the issues that were touched upon in the chapter. I didn't connect to this one as much as I had thought I would, and that's probably, very simply, because it wasn't aimed at my demographic. Maybe someday someone (maybe me) will write the version for young-adult survivors who were treated as children. I will fly all over the country and meet these people and have them tell the deep, true stories.
My hope is that the content of books like these, and these specific books, will spread so that awareness can be raised for the part of "cancer" and other serious illnesses that the public is not privy to and so often does not consider: the collateral damage of siblings and caretakers, emotional, spiritual, and existential well-being, late effects, and all the other things that go along with these illnesses besides the simple "fight", the baldness, and then the ribbons and walk-a-thons. I'd settle just for this information getting into the hands of the patients who become the survivors- that there will be issues afterward, that it doesn't mean a perfect life, that a lot of it is learning to accept and adapt to the parts of it, and figure out how it makes sense to talk about, think about, and hold them for yourself. I think this might help people avoid the long hard slog I was dealing with and find their way to the help they need faster. Forewarned is forearmed. They tell you every single possible side effect of every single med, but they give you no guidance on the fact that your life after this disease is something that you need to work through, towards, that you don't just snap back into shape and position like nothing happened. Something happens, and that is going to require adjustment and assimilation. I'm glad they're starting to do some college stuff through Dana-Farber.
I hope as the shift from survival at all costs to survival with minimized costs continues, that more and more will be available. As much as I want no one to suffer what I suffered when I was sick, I want no one to suffer what I have suffered afterward either.
I don't know if it is my job to write that/those books, to take on that crusade. I'm going to let time tell because I have the luxury of time and I am taking this opportunity to take a break.