Saturday, May 30, 2009

not alone

So I've been looking for the title of a book I came across a few years ago. It was on the review page of a healthy-living magazine that I read. The only thing I recall from the book was the guy's face (ie the cover) and that he is Canadian (a Montrealer). The book was a memoir of sorts, about him and his life with CHD (Congenital Heart Deffect). I made note of it in the back of my mind because, of course I've wanted to read his story - sorta. You know how sometimes you're attracted to something that might not be good for you - well for me this book represented something too close to home. That's probably why, while I made mental note of it, I never actually wrote the damn title down (or author's last name!)

Well, after a few internet searchs (only knowing his first name and what the book looks like ~ I have a somewhat photgraphic memory) I was successful in my search. When I looked it up at the big box retailers etc., to my dismay it read "out of print". On my way home from a (student) massage the other day I decided to stop off at the bookstore close by to see if perchance I could maybe find it (I like haystacks and needles). Wouldn't you know it, I was called to that location of that store for a reason. I picked up the second to last copy and started reading it right there. I didn't run to the registers right because I was completely disappointed in the size of the book and felt it was not worth the cover price.

I started reading voraciously. I got to page 35 (of only 110, 4 x 5" pages) when I realized that I could write a book about living with CDH and it would look and read nothing like what the author has penned. As I flipped through the second section I realized he made up a 6th stage of grief (to add to Kubler-Ross' 5 stages) and trademarketed it. It's great that he's got something to sell but seriously - turn your CHD into a TM.

Well, if it weren't for a gift card I received a while back from a very generous friend, I would have left the book there.
So, I took it home and continued through his story feeling ever so eerily similar, all the way down to the part where he also got really resentful at his father for not being healthy! Same stuff.

My resentment towards my father, in one paragraph is because he's overweight, doesn't exercise and could live to his 80s if he would take care of himself - just like this author's experience. Here we are (or were in my case) exercising, trying to eat well (no red meat here!) and being hopeful and positive to get just a few more years. It's hard watching others who have a choice in their state of health just throwing it away.

Anyway, findng this guy's book broke some isolation of living with CHD. In the past I've emailed him, to let him know that, hey I'm "still here" too. I went to his website last month (when I found his fullname) and apparently he's still alive. He's 39 (and a pisces too!!). We don't have the exact same defect but it's as close as I've come to a hole in the heart twin as I'll probably ever encounter. His story, that of trumping doctors, and even having fun with non-cardiologist doctors is the exact same as mine. It's really weird.

Although I am not writing a book review, I will say, reading it made me feel less alone. It is the first time in my life that I've come across "my story". People may come across bits and pieces of stories they relate to but for the most part, his early story is my story.
And, I'm not alone. Someone else understands the lunacy of having a life sentence at 18 (although it was 16 for me). Someone else understands the fear of relationships (because our illness makes it too complicated) and the fear and guilt of leaving someone behind. Someone else understands the confusion of not understanding how it is they're "still here". Someone else understands the fun of watching medical professional wonder how we're "still here. Someone else understands why I didn't see my cardiologist for years: because they did the same thing!

I am not alone in my experiences - it's as if they've just been validated. (The most ironic thing is that it's not even really good writing. It's not "bad", it's just not great!)