My Heart vs. the Real World: Children with Heart Disease, In Photographs & Interviews [Hardcover]

Max S Gerber (Author)

Book Description

Publication Date: February 1, 2008 | ISBN-10: 0879697822 | ISBN-13: 978-0879697822 | Edition: 1

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. 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.

Editorial Reviews

Review

Several of Gerber s photographs are haunting depictions of the children in their toughest moments in immense pain just after surgery, for example. But because Gerber has shared the children s experiences he was born with bradycardia and has a pacemaker the photographs feel intimate rather than voyeuristic...The way Gerber manages to convey acomplex whirl of emotions and qualities, such as determination, vulnerability, and sorrow, in a single frame is partly due to this shared intimacy with his subjects, but it is also down to his innate skill for portraiture. The Lancet --The Lancet

Dear Reader, Study every portrait here, read every word of this powerful book, the reward is immeasurable. Martha Bardach Contributing Photo Editor/ TIME Magazine --TIME Magazine

Through the powerful use of photographic imagery and personal narratives, Max Gerber gives us an as yet unseen glimpse into the hearts and minds of children and young adults who are growing up with Congenital Heart Defects. The hauntingly beautiful photography accurately portrays the thought provoking reality of their experience. Mona Barmash President, Congenital Heart Information Network --Congenital Heart Information Network

About the Author

Max S. Gerber is a professional photographer. Born three months premature with bradycardia (an abnormally low heart rate), he has had a pacemaker since the age of eight. His pictures have been published in more than a dozen countries, and in prominent periodicals such as Time, Newsweek, The Village Voice, L.A. Weekly, The Sunday Telegraph Review, DoubleTake Magazine and Los Angeles Magazine.

Product Details

• Hardcover: 203 pages
• Publisher: Cold Spring Harbor Laboratory Press; 1 edition (February 1, 2008)
• Language: English
• ISBN-10: 0879697822
• ISBN-13: 978-0879697822
• Product Dimensions: 10.2 x 0.8 x 10.3 inches
• Shipping Weight: 2.6 pounds (View shipping rates and policies)
• Average Customer Review: 5.0 out of 5 stars  See all reviews (14 customer reviews)
• Amazon Best Sellers Rank: #201,676 in Books (See Top 100 in Books)

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Most Helpful Customer Reviews

12 of 12 people found the following review helpful

5.0 out of 5 stars Amazingly beautiful April 10, 2008

By arwMommy

Format:Hardcover

Wow........I got this book for my almost 10 year old son. He has TOF/DORV, had tons of complications, ending up in PICU for a year and emerging with lots of "accessories" including a trach, ventilator, oxygen, gtube, pacemaker and nurse 24/7. He has been without those lovely things (except the pacer) for many years now, but is starting to come to the realization that his life is different than many of his friends. Not tons different, but different. He has loved Camp Del Corazon, and we got this for him to continue to help him see that there are lots of kids who have had similar experiences.

So last night I grabbed it at 11:30pm and started flipping through it.....I was engrossed. I didn't put it down until 1:30am and I was in tears and very prayerful. Sometimes even with all that we have been through, and all the support he needs, I get caught up in the laundry, bills, shuttling kids to ballet/golf/physical therapy, and don't really remember how complicated and beautiful and terrifying his life is. How varied and amazing these kids are, yet they are tied together with such similar life experiences. This book, in it's beautiful (though solemn) photographs and words of the children and their parents, put on paper what we have known for years. That despite these struggles, these differences, this identity as the "heart kid", that these kids can find their own way in life and are richer and more compassionate for it.

Max Gerber did an amazing job with this book, and gave all of our kids a wonderful gift. It lets them meet other children and see the range of experiences in families dealing with various CHDs. This is a MUST BUY for you and your child. I am buying it as gifts for our Ped Cardiologist, and other families I know who are dealing with this as well. Bravo.

7 of 7 people found the following review helpful

5.0 out of 5 stars Amazing and Inspirational March 21, 2008

By S. Scott

Format:Hardcover

This is an incredible and unique look into the lives of people with congenital heart defects (CHDs). Max Gerber's photographs and interviews are incredibly personal and through them I got a sense of the enormous bravery and maturity that every child faced with a life-threatening illness must develop. I don't have a heart defect, but have friends with CHDs, which is how I came to this book. The perspectives given by the children and their families are an inspiration to anyone. I would've bought this book for the interviews or photographs alone, but together, they create a profound message, the likes of which I've rarely seen.

4 of 4 people found the following review helpful

5.0 out of 5 stars Transcending April 3, 2008

By Timothy Archibald

Format:Hardcover

Not knowing anyone affected with Heart Disease, I approached this book from a photography standpoint. Taken by the photographs, I sat down and read the book and was immediately drawn in.

Woven into this book is Max's story. He is in the book, in words and pictures, telling his story of being a kid, like the kids in the book, growing up with heart disease. He tells us, his parents tell us, about his childhood with words and pictures and then gets into the stories of the kids in the book.

After reading Gerber's chapter on himself, one can't really look at the images of the kids the same. At it's best it seems like he is channelling the kids, finding aspects of himself in each kid to focus in on, which gives the photographs this kind of psychic power. When Gerber photographs a bunch of boys ripping open a present at a birthday party, it just seems to transcend the subject matter into a picture about wanting to have a normal life with small normal thrills.

The photographer isn't really just connecting with his subjects in this book, it seems like he is trying to figure something out thru them... and we are just here witnessing it all. By the time you get to the end of the book and see the shot of Gerber photographing himself in the mirror with two of the kids, the book kind of hits this emotional crescendo and you see what this is about. MG is using photography to understand his own life, thru these kids. The book was a document of this kind of personal fact-finding mission.

2 of 2 people found the following review helpful

5.0 out of 5 stars Thank you for a great book on life with a CHD! March 26, 2008

By Leslie C. Phillips

Format:Hardcover

I am a parent of a 3 year old boy with Tetralogy of Fallot (TOF) who has had 2 open heart surgeries and a heart cath before his first birthday and will endure several more surgeries into his adulthood. I have been actively trying to collect books with information to help us prepare him for life with a Congenital Heart Defect (CHD) and to make his "normal" well, normal! This wonderful book was referred to me and I immediately preordered it. When the book arrived, my husband and I could not stop reading it and taking turns with it. I then sat down with my son and we looked through the book at the pictures and he immediately noticed one of the boys zipper scars and pointed out that the scar was like his! YES!!! I loved that moment and we look at it frequently so he can see others like him instead of people staring at his scar and making him feel uncomfortable. Plus the book is helping him to understand what his next surgery is going to look like since he is going to be older and will undertand what is going on since he saw one of the young boys with his surgery.
I hosted a family support meeting for other families with children with CHD's and several looked at the book and emailed me later asking where I had gotten it. I know tell many families about this book in hopes that it will help their children as it has already helped my son and help the families as the book has helped me.
Thank you Max Gerber for putting this book together and putting faces and zipper scars out there for people to see how CHD looks!Congenital Heart Defects are the number 1 birth defect that no one really knows about and there is so much awareness that needs to be put out there for current and future families with children with CHDs. Hopefully this book will help get that awareness out there and help others with CHDs!