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The Book of Kehls
When Bridget Moore left Ireland in 1865, she never suspected that along with her trunk and rosary beads, she was bringing Duchenne Muscular Dystrophy to New York City. It wasn't until Bridget was a grandmother, one who had buried four of her grandsons, that she realized she'd brought MD to the States, a disease that would haunt her family for generations. Years later, her great-grandchildren grew up under the elevated trains of Jackson Heights, Queens―and one of them was Christine Kehl O'Hagan, the author of this moving and insightful memoir.
Christine, her sister Pam, and their brother Richie played in the streets and attended mass every Sunday. But Richie had trouble walking. By the time he was diagnosed with muscular dystrophy, Christine learned that two of her mother's brothers―uncles she'd never known about―had died of MD. Christine eventually married and had a healthy son. But one day she saw her second boy, Jamie, struggle to climb onto the school bus―and she knew knew then and there that this disease would be with her the rest of her life.
Extraordinarily written, with much honesty and humor, The Book of Kehls is the engaging story of a family that has known love, courage, and heartbreak in equal measure―and survived.
Christine, her sister Pam, and their brother Richie played in the streets and attended mass every Sunday. But Richie had trouble walking. By the time he was diagnosed with muscular dystrophy, Christine learned that two of her mother's brothers―uncles she'd never known about―had died of MD. Christine eventually married and had a healthy son. But one day she saw her second boy, Jamie, struggle to climb onto the school bus―and she knew knew then and there that this disease would be with her the rest of her life.
Extraordinarily written, with much honesty and humor, The Book of Kehls is the engaging story of a family that has known love, courage, and heartbreak in equal measure―and survived.
- GenresNonfiction
224 pages, Paperback
First published January 1, 2005
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Displaying 1 - 7 of 7 reviews
February 29, 2020
I was not excited about reading this book. I did not have high expectations and thought it would read like an ABC special featuring crip porn. I was instantly sucked in by her form of writing and how beautifully she wrote about such a heart wrenching experience. The book chronicles 6 generations of family, the authors family, that had boys with Duchenne, Muscular Dystrophy. It was so fascinating to read her descriptions about how the older generations cared for these boys and what their lives were like before we had the technology of electric wheelchairs, ramps and basic rights for people with disabilities.
I was struck with the authors ability to describe the weakness and the deficits of her grandparents, parents and even herself and her husband with such a survivalist and strength based perspective. Her ability to show an overpowering empathy for her family members and describe reasons why they made the choices they did inspired me to understand others in the same empathetic lense. The author is by far hardest on herself and bares her guilt like an open wound. The only criticism I have of the book is that I found myself wanting her to put away this guilt and move on with her life as it was, which she finally does and I think by the end of the book forgives herself.
It was also fascinating to read about the authors perspective on how each of these mothers coped with caring for these boys and ultimately the deaths of their sons. The author is a sister of Richie and the mother of Jamie, both of whom had Duchenne Muscular Dystrophy. I was utterly amazed and awed by the authors ability to describe her own experiences in such a raw, open way. She really reveals her heart and soul in this book and the intense feelings of guilt she has as a sibling survivor and a mother that passes this disease onto her own son.
Her intimate descriptions of all the physical hardships and barriers these boys went through, resonated with me on such a personal level, having a brother with SMA Dystrophy and myself having SMA Dystrophy, I felt like she was personal describing all the times I fell down and scraped my own knees trying to scale curb cuts, or dodge the bumps and pushes of other children and just trying to stay standing on my weak, wobbling legs. Even though it has been 37 years since I walked, her descriptions brought the memories of those struggles back to me like it was yesterday. Oh, and the utter, life-changing freedom that came with my first electric wheelchair! There were times when I was reading this book, that I literally thought how does she understand and describe my own experiences so well. I have never read anything like it that has resonated with me and my own experiences. This book literally tore me apart with some of her descriptions in their sheer power to bring forth of feelings of my childhood and the extreme sorrow of having lost my own brother and so many friends with Muscular Dystrophy.
Finally, I also found a quote in the book that I love, "It is no small thing to come home at night to a hot meal, and someone who loves you."
I was struck with the authors ability to describe the weakness and the deficits of her grandparents, parents and even herself and her husband with such a survivalist and strength based perspective. Her ability to show an overpowering empathy for her family members and describe reasons why they made the choices they did inspired me to understand others in the same empathetic lense. The author is by far hardest on herself and bares her guilt like an open wound. The only criticism I have of the book is that I found myself wanting her to put away this guilt and move on with her life as it was, which she finally does and I think by the end of the book forgives herself.
It was also fascinating to read about the authors perspective on how each of these mothers coped with caring for these boys and ultimately the deaths of their sons. The author is a sister of Richie and the mother of Jamie, both of whom had Duchenne Muscular Dystrophy. I was utterly amazed and awed by the authors ability to describe her own experiences in such a raw, open way. She really reveals her heart and soul in this book and the intense feelings of guilt she has as a sibling survivor and a mother that passes this disease onto her own son.
Her intimate descriptions of all the physical hardships and barriers these boys went through, resonated with me on such a personal level, having a brother with SMA Dystrophy and myself having SMA Dystrophy, I felt like she was personal describing all the times I fell down and scraped my own knees trying to scale curb cuts, or dodge the bumps and pushes of other children and just trying to stay standing on my weak, wobbling legs. Even though it has been 37 years since I walked, her descriptions brought the memories of those struggles back to me like it was yesterday. Oh, and the utter, life-changing freedom that came with my first electric wheelchair! There were times when I was reading this book, that I literally thought how does she understand and describe my own experiences so well. I have never read anything like it that has resonated with me and my own experiences. This book literally tore me apart with some of her descriptions in their sheer power to bring forth of feelings of my childhood and the extreme sorrow of having lost my own brother and so many friends with Muscular Dystrophy.
Finally, I also found a quote in the book that I love, "It is no small thing to come home at night to a hot meal, and someone who loves you."
May 6, 2010
A well-written, poignant story of a very brave woman and her family devastated by generations of young men debilitated by muscular dystrophy.
Christine Kehl O'Hagan discovered a photo of "the boys" hidden in the back portion of a drawer and thus learned her families hidden secret that her mother became an only child when both her brothers died from DMD (Duchenne's muscular dystrophy.)
Her mother married, had two healthy daughters and one son who, in his early years, developed the tell tale signs of DMD. Sadly, at the time her brother Richie was born, there was little research and Jerry Lewis telethons were not a reality.
By the time Christine became pregnant, research indicated that it is the female who is predisposed to pass the faulty gene to male children. Despite this knowledge, Christine and her husband took a risk and became pregnant. Their first son was fine and they gambled one more time when their second son was born. Despite denial, sadly, Christine and her husband had to face the fact that their second son Jamie had DMD.
This heartbreaking, yet hopeful story chronicles the way in which Christine's grandparents, parents, her brother, she, her husband and two sons coped with this terrible muscle wasting disease.
This is an author who can write and express complex emotions. While at times the passages are raw with pain and grief, it is well worth the time spent in reading.
Christine Kehl O'Hagan discovered a photo of "the boys" hidden in the back portion of a drawer and thus learned her families hidden secret that her mother became an only child when both her brothers died from DMD (Duchenne's muscular dystrophy.)
Her mother married, had two healthy daughters and one son who, in his early years, developed the tell tale signs of DMD. Sadly, at the time her brother Richie was born, there was little research and Jerry Lewis telethons were not a reality.
By the time Christine became pregnant, research indicated that it is the female who is predisposed to pass the faulty gene to male children. Despite this knowledge, Christine and her husband took a risk and became pregnant. Their first son was fine and they gambled one more time when their second son was born. Despite denial, sadly, Christine and her husband had to face the fact that their second son Jamie had DMD.
This heartbreaking, yet hopeful story chronicles the way in which Christine's grandparents, parents, her brother, she, her husband and two sons coped with this terrible muscle wasting disease.
This is an author who can write and express complex emotions. While at times the passages are raw with pain and grief, it is well worth the time spent in reading.
September 29, 2015
This beautifully-written memoir brings us into the family of men and women who carry DMD, Duchenne Muscular Dystrophy. I read this book a number of years ago and re-read it this week. Not often do I feel myself at the brink of tears when reading, not often do I smile at the tender successes. I loved this memoir.
Duchenne Muscular Dystrophy, a genetic disease that is passed from mother to son, is usually diagnosed in young boys and usually leaves them wheel-chair bound before they are ten. And that is only the sad beginning of their decline. Although there has been some progress with something called an exon - skipping gene therapy that helps with some forms of the disease, there is still no cure.
Christine Kehl O'Hagan lost her brother and her son to the disease and brings the reader into the journey with great tenderness, with great rawness but with a stalwart and pitiless honesty. Nothing has touched me quite this deeply in ages.
Duchenne Muscular Dystrophy, a genetic disease that is passed from mother to son, is usually diagnosed in young boys and usually leaves them wheel-chair bound before they are ten. And that is only the sad beginning of their decline. Although there has been some progress with something called an exon - skipping gene therapy that helps with some forms of the disease, there is still no cure.
Christine Kehl O'Hagan lost her brother and her son to the disease and brings the reader into the journey with great tenderness, with great rawness but with a stalwart and pitiless honesty. Nothing has touched me quite this deeply in ages.
April 10, 2023
Read this the first time several years ago. It is a raw look at a family dealing with debilitating illness and ultimate death. The honesty, truth and emotional impact continue to resonate from my first reading. Such an intimate look at grief and loss. Will probably read this again in a few years.
September 1, 2020
Equal parts depressing and frustrating, beautifully written and incredibly touching
March 20, 2010
This is a sad but courageous story of one family that has been cursed by Muscular Dystrophy for years and years. Christine Kehl O'Hagan's family carried the gene for the disease, which strikes boys only. She had two uncles who died from the disease that she never even knew about, until she found their pictures hidden deep in the back of her Grandmother's closet. Christine's brother, Richie, was struck with the disease when he was very young. Almost as soon as he started walking, they noticed a problem. Richie lived to be 22 years old, when most DMD patients are only given until they are in their teens.
When Christine and her husband Patrick had children, they were blessed with two boys. The eldest, Patrick Jr, and Jamie....Jamie, who had unfortunately been passed the DMD gene. Christine stayed in denial as long as she possibly could, but poor Jamie could not even climb the steps to the school bus. Once they had a confirmed diagnosis, their lives took a dramatic turn.
This gritty, honest memoir was tough to read, but at the same time, very uplifting. Jamie knew that his life would not be long and accomplished so much in the short time that he was here. He passed away at the age of 24.
~"I don't know what I'll do if anything happens to you," I told Jamie some months before he died, a couple of pneumonias into the year. When he'd ask me how long I thought he would live, the same question that my brother had asked all of those years before, I'd simply told him that he wouldn't live to be old, that he shouldn't worry about long but instead, how deep.
"You'll be alright,", he said, staring into my eyes until I looked away, a conversation I remembered about a year later, on a Sunday afternoon, when Patrick called me into the living room to see a football play, and I came out of the bedroom to read him a poem. I hate football. He hates poetry. I don't know why it is that miracles come into our lives wearing toe shoes, yet the disasters show up in construction boots - but Jamie was right. We're alright.
When Christine and her husband Patrick had children, they were blessed with two boys. The eldest, Patrick Jr, and Jamie....Jamie, who had unfortunately been passed the DMD gene. Christine stayed in denial as long as she possibly could, but poor Jamie could not even climb the steps to the school bus. Once they had a confirmed diagnosis, their lives took a dramatic turn.
This gritty, honest memoir was tough to read, but at the same time, very uplifting. Jamie knew that his life would not be long and accomplished so much in the short time that he was here. He passed away at the age of 24.
~"I don't know what I'll do if anything happens to you," I told Jamie some months before he died, a couple of pneumonias into the year. When he'd ask me how long I thought he would live, the same question that my brother had asked all of those years before, I'd simply told him that he wouldn't live to be old, that he shouldn't worry about long but instead, how deep.
"You'll be alright,", he said, staring into my eyes until I looked away, a conversation I remembered about a year later, on a Sunday afternoon, when Patrick called me into the living room to see a football play, and I came out of the bedroom to read him a poem. I hate football. He hates poetry. I don't know why it is that miracles come into our lives wearing toe shoes, yet the disasters show up in construction boots - but Jamie was right. We're alright.
April 9, 2008
Very emotional book about a mother with two sons - one has Duchenne and one does not. While it was a difficult book for me to read in some ways, I also found some solace in it. If this mom could survive this and deal with the heartache that Duchenne brings and she didn't have the gospel and the knowledge of forever families, then I can do this (though I still find myself questioning that more then really standing firmly behind it).
Displaying 1 - 7 of 7 reviews