on 31 January 2014
This book, which I’d eagerly awaited since learning of its impending publication, is one of the most difficult books I’ve read. Not because it’s written in an impenetrable style, or full needs a dictionary of drugs or a medical qualification, but because of its matter-of-fact accounts of the confusion, terror, hope, tears, love, support, defiance and strength that we people with HIV have lived with for the past thirty-odd years.
I bought the Kindle edition on Tuesday morning and found myself surprised to have finished it on Saturday evening. Although the Kindle edition doesn’t have real page numbers, the final 25% of the book consists of the most detailed index I think I’ve ever seen, and though the index uses page numbers, they take you to the correct place in the book. You will need paper hankies: I think I cried about every five page turns.
It’s largely a memoir, but with one hell of a slice of history. The history of HIV in America seen through eyes of the author. Details aren’t spared: Sean’s description of his pulmonary KS reminded me of a friend who had to sleep sitting upright for fear of a KS lesion blocking his windpipe. (If it seems over-familiar to refer to the author by his first name it’s because there’s so much of himself in the book that I feel I know as much about him as I do about some of my closest friends.)
The memoir and broader history are intermingled. Naturally I can’t comment on the memoir, not knowing Sean, but the broader history tallies exactly with what I remember as we pored over imported copies of The Advocate and other imported US magazines. Details are spot on in the 80s, but more sparse in the 90s as Sean’s health declined.
From the introduction of protease inhibitors, and “the Lazarus effect” the book becomes more memoir than history as Sean rebuilds his life from being at the point where he had a CD4 count of 1. There’s a lot of name dropping, but then he was at one point before HIV looking to political office. And unlike many people with HIV in America he was never homeless or so poor he struggled for food.
Read it: there are times when it hurts like hell; for myself I found myself running almost a side-window of what was going on in the UK at the same time, remembering people and incidents I haven’t thought about in years. It’s not a wallow in nostalgia: it’s the story of the fights it took to get to today.
I don’t believe in summarising a book in reviews (as you’d see if you looked at my other reviews here), but prefer to reflect on how a book has affected me. And this one cuts deep. I started keeping notes of things to mention in this review, but quickly realised that it would be invidious to mention one fact over another. I’m going to need time to absorb what I’ve read, and I’m going to have to read it again, perhaps, with slightly drier, more critical eyes.
If you’ve just been diagnosed with HIV, wait. You need to have found your balance with your new life before you read this as it’s so blunt, at times, in its accounts of illness. Illness that you’ll probably never see. If you’ve reached an accommodation with your little passenger, you’re comfortable with your drugs and you’ve got used to your clinic visits, then this really is essential reading.
This review was originally written for the online magazine [...], hence the assumption that the reader is HIV positive.