Max Gerber’s My Heart vs. the Real World is a photo documentary volume that explores the lives of children with congenital heart disease (CHD) through striking black-and-white photographs and interviews with subjects and their families. Congenital heart defects are the most common of all birth defects, occurring in one out of every 115 to 150 births. Every year over 25,000 CHD children are born in the U.S.
“Max Gerber’s powerful portraits of children are intimate and beautiful. No other photographer could have made as strong a statement about these children. Max has lived their experiences, and he has shared his life with us through these sensitive and beautifully executed images. We get to know these children, we see them grow, we see their strength and their beauty.”
—Mary Ellen Mark, photographer
Ten chapters each spotlight a single child and in an additional chapter, the author writes about his own experience of growing up and living with CHD. The images and personal accounts reveal how, compared with someone healthy, a chronically ill child develops adult attitudes in a much different way. These are stories of how CHD patients and their families cope with and overcome extraordinary obstacles and learn about themselves during the process.
My Heart vs. the Real World is sometimes funny, sometimes sad, always thought-provoking, and altogether human.
this week i’m headed off to orlando to the cardiology 2010 conference. i’ll be speaking and signing books there saturday night (2.13.10) at the disney contemporary resort. if you’re in the neighborhood please stop by and say hello!
as part of my presentation to the conference i made this short film. this conference is mostly a medical one, with 26 of us (out of 900 attendees) being classified as “miscellaneous.” a long while ago i met a CHD researcher who told me that one thing doctors and scientists often miss out on is information on the emotional lives of their patients. given that, i wanted to show how some of the subjects from the book are doing now, as young adults out in the world. they’re dealing with the same things we all have to contend with – school, the future, family, love, fear. and they’re all a whole lot more interesting than listening to me speak!
my recommendation: watch it HERE, full screen, in HD for best results.
I was interview on the Charlie Rose show on Wednesday, June 18th, 2008 – Talking about the book and about CHD in children and in my own life. It’s a short segment, and you can see it on Charlie’s website, or here:
a few weeks ago dylan’s mother called me to say that everyone wanted to do an update to our mirror picture from 2001 that’s in the hearts book. it turns out dylan and his family were going to be visiting mario in camarillo on memorial day and we took that as a perfect opportunity to duplicate our previous efforts. it’s funny to see the difference – amazing, and funny and strange. bill commented that it looks not so much like the kids grew up, but rather like i shrunk. mario also got some fuzzy dice and a ceiling fan. i love that dylan has roughly the same expression, and mario has roughly the same shorts! dylan had just graduated high school a few days before, mario and ali are starting their senior years of high school in the fall. i wisely lost the silly goatee, but still need a haircut, as always.
taking into account a leap year (there was only one, right?) i figure there are two thousand four hundred and eighty-five days separating these two pictures.
ali was hanging out with us, too, and all three of them were fairly engrossed in the $5000 or so worth of high end consumer electronics that mario had just received from the make a wish foundation. actually, to be fair, mario and dylan were engrossed in the giant flat screen TV and playstation 3, while ali simply text messages every fifteen seconds.
for myself it seemed a fitting way to spend memorial day. the kids signed my book, we took some pictures, we talked some about their friends from camp who’ve passed away, and the thing i was struck with is that i’ll probably – if i’m lucky – be involved with these families my whole life. i’m dumbstruck at how far we’ve all come already. i wonder what it will be like in another two thousand four hundred eighty five days?
I was at the ACHA (Adult Congenital Heart Association) Conference in Philadelphia May 1st through 3rd, and had a great time signing books and photographing the conference attendees. Thanks to everyone at ACHA and to everyone who allowed me to take their picture. No thanks to Southwest airlines who almost lost my lighting equipment.
Click on the thumbnails to see the images big. Thanks.
ali called me the other day to tell me she got accepted into a summer program at the california college of the arts for photography. ali’s chapter is the first chapter in the book, and now she’s 17 years old, a little punk rock, and wondering out loud to me if they’ll be “cute little punk boys” in oakland. i daresay there will.
ali’s been taking photo classes for a few years now, and when she started i couldn’t help but wonder if me being around with a camera for so long had any influence on that. i guess the question was answered when her mom forwarded her CCA application essay to me. (ali said it was okay to reprint it here):
My name is Ali Sandoval, I was born with heart disease, and I believe it has made me see the world differently, therefore I consider this disease a gift. I am a photographer who finds photography as a way to capture what I see. To me photography is not only what I see, but what I see looking back. Photography is my life because I see what others do not and that’s the true beauty of art itself, seeing the details others pass. I want to be a photographer. I do not have a back up plan because I know I will not need one, this is what I want, and I will do what ever it takes to let my voice be heard through my photography.
I have three people to really thank for creating this life for me. The first person is Max Gerber who opened my eyes to the world of photography. Max contacted my family through Camp Del Corazon, a camp I attend for children with heart disease; he was constructing what would become, My Heart VS. The Real World, a book about children with heart disease. When Max first came to my house I was probably around the age of six or seven. He came, he interviewed, and then showed me his life. I recall seeing the camera equipment he owned and being shocked at how he knew what to do with all of it. Being so young I didn’t know what to do besides just sit there and stare. What I found to be awesome was he knew exactly what to tell the person to do so he could get the perfect picture. I like to explain his photographs as” kill the smile” because he is able to capture so many emotions without even having the subject show any emotion. I consider Max a hero of mine because he inspired me to become a photographer, he is very successful with what he does and has always encouraged me to not give up.
The second person I have to thank is my photography teacher Mr. Lindroth. Mr. Lindroth is the best teacher I have ever had he basically showed me that you can’t just want to be a photographer, you have to do everything you can to become the photographer you want to be. Being a student in his classroom I have learned so much and been able to see my pictures come to life in the darkroom. The best thing about Mr. Lindroth is he gives you ideas but never tells you exactly what to do; he gives us this artistic freedom to explore and create art ourselves. Mr. Lindroth gives his students guidelines but encourages us to think outside the box, he encourages us to create what we think we can not. His classroom has become almost like a home, it’s like I live there because that is where all my photographs have developed and all my ideas have un-hatched. If I had not taken his class then I never would have become a growing artist. Mr. Lindroth has given his students a starting point and lets us continue building this road on our own and he always has told us that this road should never end. I thank Mr. Lindroth for being the best teacher I’ve had, he taught me to think outside the box, but what he really taught me is that there never is a box when you let your mind be free, when you explore the world as an artist.
The third group of people I have to thank is the Make-A-Wish foundation for giving me a camera and equipment to pursue my dream. When I was fourteen the Make-A-Wish foundation came to my house and definatly not by my choice. At first I disagreed with even participating because I felt like they felt bad for me because I had heart disease; where as I’m fine with it because it gave me this artistic side. As they tried to convince me to allow them to grant my wish I would not let it happen. I then told my family how I felt about this and then the Make-A-Wish foundation returned to explain I should see it as an opportunity and not as them feeling bad. I still sat there answering questions they had to ask, when then by one question it all came together, he asked, “What do you like to do?” My response, “I love taking pictures.” With that response they asked if I’d like a camera and that was the first smile that camera put to my face. Ever since I received my camera I’ve smiled so many times from being able to capture what I see. I love my camera, my Canon Rebel and I go everywhere together. I thank the Make-A-Wish for coming back and making my wish come true.
I thank all these people because if it wasn’t for them then at this moment I would not know what I want to be. They have introduced me to photography, given me the tools to create and be inspired. They taught me to show how I see the world. I thank them because I now know I want to be a photographer. I thank them for giving me the steps, opportunity, and guidance to do what I want and continue to let my photography speak for itself. If it was not for them then there would be a box. I want to attend this summer program, I want to learn more, I want to better create what I know, I want to be a photographer, I want this opportunity to make the voice in my photographs be stronger, it’s not just that I want this it’s the fact that I’m not giving up and I’m going to do whatever it takes to let my voice be heard through my photography and eventually my pictures will speak for themselves.
that’s pretty wonderful. it’s an honor to be an influence on anyone’s life, really. also, ali is full of good advice. she told me that i should get my girlfriend flowers, since girls like that sort of thing. she also requested that i post here one of the photos from last summer, with her, dylan, mario and myself. so here they are:
(ali is the first chapter in the book. dylan is second, mario is third.)
so it seems there has been some activity today on amazon. that’s great news. for the past few weeks our amazon sales rankings have been comfortably in the 300,000 to 400,000 range, with occasional forays into the high 100k’s.
this morning i noticed the ranking had broken into five digits – first hitting 97,000, then 54,000 and then settling finally at 22,500! that’s really encouraging. at least, i think it is. i’ll be honest, i’ve no actual idea what these numbers mean. i’m just assuming that’s a good thing.
still, nobody’s posted reviews yet and i’m morally opposed to planting my own. if you have the book out there and liked it, please post a review on amazon! you can see the amazon page here.