3 comments about See Sam Run: A Mother's Story of Autism (Mayborn Literary Nonfiction).

1. Very touching book. I couldn't put it down once I started reading. This is one book I will let people know about.



2. I preordered See Sam Run, and started reading it the day it arrived in my mailbox. The next morning, when I woke up with a stomach upset, I was thankful that I could call in sick and finish reading it.
   
   This book took me on a familiar journey thorough the haze of denial, the thick fog of despair that descends when denial is no longer possible, then through the maze of discovery trying to find a professional who would listen without condescension or judgment, and provide the help we needed. What a relief to learn that I am not the only mother who has harbored those thoughts and feelings, faced the cold, bare truth, and fought and clawed her way through that maze.
   
   The picture this narrative paints of Sam's day to day life helped me clarify and map our own journey. I cried traveling back through those painful memories. I cried for my son and Sam, for Peggy and Mark and me. Taking the journey with and through another helped heal the scars.
   
   I laughed too. I laughed at the quirky, funny boy that is Sam. I laughed at the captions he wrote for the pictures. I laughed in relief that we have found, after all that running, an easier pace.
   
   My son is not autistic. He has Sensory Integration Dysfunction. I'm not sure if he has something else because we gave up trying to find out. We decided to just deal with it. He now compensates beautifully.
   
   There are many resources in the back of this book to help ease the journey other parents and children face. This book provides a map through the maze.
   
   When a parent admits something is wrong and that they need help, why is it so torturous to find that help? That's the question I was left with after reading this book; and that is the question that needs an answer. You see, I'm not the only mother and Sam is not the only son!



3. How do you raise a child diagnosed with autism? "See Sam Run: A Mother's Story of Autism" is Peggy Heinkel-Wolfe's story of dealing with it. Look at the growing number of autism spectrum diagnoses, she wonders - is the diagnosis system improving, or is there something wrong with modern health? The numbers, while important, speak of nothing of the daily troubles parents must face. As she began to come to terms with her autistic son, she wrote her story down in "See Sam Run: A Mother's Story of Autism", highly recommended for community library collections.

5 comments about Inside the Halo and Beyond: The Anatomy of a Recovery.

1. Pulitzer prize winning poet-naturalist Maxine Kumin chronicles a period of nine months, from the horrible horse-and-carriage accident that left her with a 5% chance of survival, and an even tinier prospect of ever walking again, to the time she is once again able to scramble up steep hills on her farm in New Hampshire again, albeit with difficulty. Hers is a statistically improbable recovery brought about not just by discipline and determination, and certainly not by faith (she is an atheist), but by love -- her family's love of her, and her own love not just for husband, children and grandchildren, but for horses, dogs, birds, vegetable garden, the seasons, and above all art and her craft. A passionate biophiliac, Kumin's love of nature can not be separated from her love of others, or her will to survive. This is an inpsirational book at so many levels. I completed it within hours of getting my hands on it, with my husband (a medical doctor) urging me to keep going, because I was reading it out loud to him and to my thirteen year old son. Inside the Halo... is wise, upbeat, gorgeously written and utterly inspirational. Someone you know scheduled for an operation? Had an accident? Run into some discouraging news? Forget the card. Send this book.



2. Maxine Kumin has given us a gift. "Illness, disability, the specter of permanent damage... are deeply personal, immediate, and terrifying," she writes. Indeed. This chronicle of recovery from a cervical spinal injury sustained after her horse bolted is a courageous foray through the intense first ten months of recovery.

   More than a story of pluck and resilience this book delivers joy in its reaffirmation of what nourishes us: loving relationships. Relationships with husband, son, daughters, and friends--both old and newly formed in recovery-- and relationships to the land, to its bounty. It seems impossible for someone so connected to life to ever give up on it easily. Kumin narrates, in journal form, her struggles and how she didn't quit.

   Kumin's life unfolds in this book. We see the stoic formed when her adored father "hovered in the doorway" when she was ill as a child; the horse lover who takes "deep pleasure" in seeing her horses in action; the gardener describing cauliflower and broccoli lovingly planted in May from seeds started on living room windowsills; and the poet who says of her farmhouse, "All of my doors are held open by stones."

   The mother and wife are here, too. Kumin's daughter, Judith, spends months with her mother. It is comforting to read of a supportive, caring, daughter/mother relationship that flourishes during a time of great stress. Kumin is not afraid to tell us about moments of guilt and despair: "How I feel about my accident is quite simply that I screwed up everybody's life by living through it."

   All this is written within a flowing narrative style that is groomed by this writer's cumulative knowledge of what is important in language and life.

   Maxine Kumin is one of my favorite poets. I cheered when this well-paced chronicle lead to a spring when this writer was finally back in the "peaceful kingdom" of her farm in New Hampshire. I am grateful the author has offered a book that allows us to witness her struggle as she looked inward and reached out.




3. Maxine Kumin has given us a gift. "Illness, disability, the specter of permanent damage... are deeply personal, immediate, and terrifying," she writes. Indeed. This chronicle of recovery from a cervical spinal injury sustained after her horse bolted is a courageous foray through the intense first ten months of recovery.

   More than a story of pluck and resilience this book delivers joy in its reaffirmation of what nourishes us: loving relationships. Relationships with husband, son, daughters, and friends--both old and newly formed in recovery-- and relationships to the land, to its bounty. It seems impossible for someone so connected to life to ever give up on it easily. Kumin narrates, in journal form, her struggles and how she didn't quit.

   Kumin's life unfolds in this book. We see the stoic formed when her adored father "hovered in the doorway" when she was ill as a child; the horse lover who takes "deep pleasure" in seeing her horses in action; the gardener describing cauliflower and broccoli lovingly planted in May from seeds started on living room windowsills; and the poet who says of her farmhouse, "All of my doors are held open by stones."

   The mother and wife are here, too. Kumin's daughter, Judith, spends months with her mother. It is comforting to read of a supportive, caring, daughter/mother relationship that flourishes during a time of great stress. Kumin is not afraid to tell us about moments of guilt and despair: "How I feel about my accident is quite simply that I screwed up everybody's life by living through it."

   All this is written within a flowing narrative style that is groomed by this writer's cumulative knowledge of what is important in language and life.

   Maxine Kumin is one of my favorite poets. I cheered when this well-paced chronicle led to a spring when this writer was finally back in the "peaceful kingdom" of her farm in New Hampshire. I am grateful the author has offered a book that allows us to witness her struggle as she looked inward and reached out.




4. Putting thoughts into words is the salvation of many, particularly Maxine Kumin, who describes her recovery from paralysis in "Inside the Halo and Beyond." I was recently paralyzed myself, so I keenly identified with the account of her rehabilitation. Yet I felt pangs of jealousy because she walks again and the chances are nil this will happen to me.

   Still, this book deserves an all-star rating for Kumin's eloquent and starkly honest description of her connections to poetry, literature, current events, international suffering, nature, equestrian riches, gardening, familial and friendly relations. She evokes empapthy and compassion without resorting to sappy sentiment or references to God. She explains, "My agnosticism eroded eventually to the skeletal remains of atheism and there I still stand. I'm not sure whether I should envy or pity the faith of others. Yes, it would be nice to have, but it seems a luxury of pietism I cannot afford."

   Her love of words is eloquent: "I've always been a galloping reader, racing for information, hurtling past intervening advertisements or cartoons, breathless and fascinated with language."

   It's a fine book.




5. Like many of Maxine Kumin's devoted reader/fan/friends, I came to her poetry through Anne Sexton's poetry/life.

   However, as wonderful as Sexton's poetry is, and I love Anne Sexton's poetry, Maxine Kumin's poetry and prose can well stand on its own considerable merits.

   Inside The Halo is a wonderful, gutsy, thoughtful book.

   Having had some "orthopedic trauma" myself, though nowhere as severe as the accident Kumin survived, I can attest to the abundant truth she tells about the frustrations and joys of rehabilitation, and the "tough tenderness" of the best therapists.

   Kumin also speaks movingly of how her amazing husband, children, and grandchildren rallied to see her through.

   This is a difficult book to write about, because words like "uplifting" have become debased with casual use.

   However, I am of the unshakable opinion that all doctors, nurses, therapists, and lovers of great writing would find something real in this fine book.

5 comments about Dancing on Quicksand: A Gift of Friendship in the Age of Alzheimer's.

1. Mitchell's remarkable account of her relationship with David Touff reminds us, regardless of whether dementia is involved, to be respectful and mindful in our relationships with each other. This well-told story is inspirational and informative, and is of especially great use to anyone dealing with how to relate to anyone whose faculties are fading.



2. Mitchell's remarkable account of her relationship with David Touff reminds us, regardless of whether dementia is involved, to be respectful and mindful in our relationships with each other. This well-told story is inspirational and informative, and is of especially great use to anyone dealing with how to relate to anyone whose faculties are fading.



3. Dancing on Quicksand was an incredibly inspirational book. Reading it has made me want to be a better person, listen more carefully, to love others unconditionally, to work harder at loving others where they are. In a culture where we want to get rid of anything difficult, it was refreshing to see what Marilyn Mitchell gained by sticking with David and loving him through his illness. Although this is a book about a person who has helped someone with dementia, it is far more than that. It is a book about what real love looks like. I am just about to open up my copy one more time and read it again. Thanks Marilyn for sharing this rich experience with us!



4. I came to this delightful book from the perspective of a daughter helping to care for my dear mother in the last 5 years of her life with Alzheimer's. Oh, how I wish I had read the book 7-9 years ago for its insights about relating to someone with dementia. Yet I think readership of this book should not be limited to people interested in this growing health problem. The book is a guidebook to enjoying life more fully, especially in the city/area where you live, as the author and David did with the many field trip pleasures of Denver. If you feel that a key ingredient of a good story is how people transform one another through their relationships, you will find yourself instantly captivated by Marilyn's and David's encounters and ensuing bond. They each possess charm, wit, and intelligence. Marilyn has an endearing ability to put herself in David's shoes, trying to understand his shrinking world and helping him uncover his genius. Marilyn's gift for language and her perceptiveness gives this book an energy that carries you to the end and leaves you regretting you're on the last page. You counter the regret by sharing this gem with others.



5. Marilyn Mitchell has done an extrodinary job depicting the life and heartwarming stories of David Touff. Marilyn focused on herself just enough; not too much, but enough to let the reader understand her as the loving caregiver that she is. As the reader becomes acquainted with David throughout the book, they feel wrapped up in every emotion he experiences. My father has Alzheimer's and there is never "one size fits all" formula when it comes to caregiving. From the time I finished this book, I am still carrying David in my heart!

   Marilyn is an extrodinary person and writer. She gave of herself far beyond what the average caregiver or family member could even imagine doing. David was blessed indeed to have had the years with her as his close friend.

5 comments about The Magic Castle: A Mother's Harrowing True Story Of Her Adoptive Son's Multiple Personalities-- And The Triumph Of Healing.

1. This book is very graphic and very gruesome. I was very disturbed by the things I read. The abuse this child suffered was horrific, and you get to hear the details from the child's viewpoint. I found the stories of abuse to be so vile and horrifying that I even though this book was a gift, I am donating it to my local library. I read it once, and would never read it again because I found it so upsetting. To think that such evil exists in the world makes me physically ill. So be forewarned that this book is very disturbing, gruesome and upsetting.



2. If you're interested in learning more about Multiple Personality Disorder, this is NOT the place to start. To go a step further, if you're interested in learning more about the "experience" of MPD, this would be an option, but I wouldn't recommend it as a first. Why? Glad you asked:

   Although the book shows interesting information and honestly reflects on Alex's experiences (through his adopted mother), it is filled to the rim with motherly love and saturated with a seemingly overzealous adopted mother. This book is really about HER experience, not his. It's about HER taking the initiative and acting the heroine when she discovers her adopted son was the victim of Satanic Ritual Abuse and suffers from a severe dissociative disorder (MPD). It isn't until the end of the book that some pictures and therapy are discussed. So if you want to learn about a multiple's journey to triumph, save yourself some time and money (and occasionally difficult reading) and get something else.

   If, on the other hand, you're looking to see things from a foster-mom-who-doesn't-know-anything-about-MPD's point of view, this could be the book for you. I became tired and irritated as I tried to crawl through the pages that were dripping with, "Oh, my poor baby! Save him!" and "If you won't, I WILL!!" Pu-leeze. Once again, if you've read them all and you want a new one, here it is. Otherwise...you might very well get more information (and less sugar) from the back of a cereal box. :v(




3. I know NOTHING about MPD and would not even begin to comment on that aspect of the book other than to say it was enlightening. That being said, I don't know if I believe the stories of abuse this child supposedly went through. It all seems a little far fetched to me.



4. this book is a little unbelievable.the horse connection is just unbelievable.its impossible to believe that such things can happen openly.however, the book is written well and kudos to the author for taking on such a challenge .the author is an angel for adopting alex when he was as wild as an animal .on the whole , the magic castle is worth a read but some people might not believe the things that happened to alex.



5. This book was incredible in helping me to understand the torment and coping mechanisms of children who have been abused. Many people are too quick to judge and condemn rather than try to understand someone who is having difficulty coping with life. Carole Smith's book has opened a door for people who want to understand.
   
   Carole Smith is an incredible parent...a REAL parent who shows how to love when it isn't easy.
   
   Alex Smith is an amazing young man who had the courage to look within and come to terms with events over which he had no control. I applaud his courage and honesty in the face of more trauma than anyone should ever have to endure. His story will help many others.
   
   As caring humans we need to take a hard look at the "safeguards" we have in place to protect children. Thank God for people like Carole and Sam Smith who are willing to reach out to wonderful souls like Alex Smith.

5 comments about The House on Beartown Road: A Memoir of Learning and Forgetting.

1. I found "The House on Beartown Road" shelved in our local library (Pound Ridge, NY) under Mental Health/Alzheimer's. I don't know who decides these things, but this wonderful memoir ought to be prominently placed along with other contemporary memoirs. Elizabeth Cohen is a fine writer and she deserves recognition for this generous tribute to her 80-year-old father, Sandy, to her daughter -- one year old Ava, and to new-found neighbors on Beartown Road and to friends in the Binghamton, NY, community. Sandy and Ava of these are at opposite ends of the verbal spectrum, one forgetting language and the other learning. Elizabeth Cohen herself is there in the middle, somehow trying to work full time as a reporter, managing day care for the two people who depend on her, figuring out how to survive the winter in one of the nation's true snow-belts, and keeping her own sanity as a harrassed single mother.My own mother is 97 with Alzheimer's and I have a one-year old granddaughter, so this book is close to the bone in many ways. I tell everybody about it. I use it in the memoir course I teach. I want to keep it to survive as a classic memoir and as a year-long account by an un-self-pitying caregiver. Elinore Standard Pound Ridge, NY



2. Few books have brought me to tears. This one did. The author writes in a matter-of-fact way about the heart-wrenching disease of Alheimer's, its impact to her life, and the lives of those around her. I didn't want the book to end. It is a quick read. Great book.



3. What a wonderful book. I have noticed that many who review this book are intimately involved in Alzheimers, be they professional or private care-givers. I don't have anyone in my immediate family with Alzheimers, but I read this as a potential gift to a friend who does. I am grateful that I was motivated to read this lovely, loving account of a disease and the way if effects those who are near it. The author and her family serve as reminders that love comes in all forms, and may be asked of you at the most inconvient moments. Don't wait until you have Alzheimers in your family to read this book. So much gentle learning to be done, so much joy to be given, so many miles we go, travellers through life.



4. In September 2004's Australian Reader's Digest, the story "The Unlikely Gift" had me in tears. It moved me so much that I searched out and ordered the book it was taken from - "The House on Beartown Road". I had been mourning the
   death of a favourite and much loved friend who died from the ravages of a similar brain disease (vascular dementia). Although her body died recently, the soul and the entity that I loved which made her who she was, was taken from me many years ago when the diagnosis was made and the slow but inevitable slide began.
   
   My friend Kath, whom I met in 1980, taught me joy and sharing, she took me into her family as if I was one of her own. As I am of a different background, she taught me to enjoy roast dinners and chocolate ripple cakes. She was a favourite auntie, a surrogate mother and most of all, a best friend. In the later years, I have been unable to be in her presence,
   as I couldn't reconcile the angry, violent person as being the same caring friend I had known. She was diagnosed in her 60's which is much too early and didn't allow her to enjoy her twilight years with those she loved and who loved her.
   
   Elizabeth Cohen's book is a beautiful and simply told homage to the reality of family life and in my opinion, a must read.



5. The author writes of her father's decent into Alzheimer's Disease (being more
   and more child like in his progression of the disease and her young son growing up from a toddler to young boyhood..the opposite ends of the spectrum. A very moving book. I may reread this one.

5 comments about Miracle in the Making: The Adam Taliaferro Story.

1. All too often in today's world of youth sports; parents, coaches and players miss the meaning of sportsmanship. Having been involved in youth sports for 14 years, I have witnessed over bearing parents and tenacious coaches. I suggest they keep a copy of "Miracle in the Making" in their equipment bags. This book highlights the true meaning of a parent/child relationship and a coach/player relationship. Adam is the definition of courage, kindness and strength. His family's support during his recovery is awe-inspiring. The writers did a terrific job of bringing me along on Adam's journey to recovery. I will be on the sidelines cheering; watching as Adam wins the biggest game of his life!



2. This book is good for anyone whether you are a football fan or not. I personally am a football fan, and I would especially recommend this book for those football fans out there. This book is inspirational and well documented. It is also at a good price now, and it is a quick read.



3. After finding out that Adam Taliaferro couldnt walk again ever. His father and mother urged him to push on. His spirits were high always no matter what. This is a triumphant story about courage and self-determination and a little help from some up above



4. This truley is an excellent book. I grew up in the same neighborhood with Adam, attended the same HS (graduate a year after) and every bit of information (names, dates, etc) are all correct. All the information about his character is completely true, he really is an inspirational person. Growing up in a huge suburban high school with him, it really was a very competitive atmosphere. Everyone seemed to love him because he was one of the brightest (one of the highest GPAs of his class, scholar athlete and best athlete in the school) along with being one of the most modest, down to early people ever. If someone had the will to succeed it is him. I recommend this book to anyone overcoming obstacles, down on their luck,athletes and basically anyone because it is the type of book that you can not put down.



5. The book "Miracle in the Making" is an inspirational story about Adam Taliaferro, a former Penn State football player who was paralyzed in a game. He was told he would never walk again and this books lets you travel with Adam in his personal story of his road back after being completely paralyzed. This boo is a truly motivational book in which i recommend anyone, not just Penn State fans, to read.

1 comments about Bob Flanagan: Supermasochist (People Series).

1. For most people who do BDSM or any of its components, the motivation is fun and hot sex. For Bob Flanagan it was a way to exploit the body that was betraying him through illness and make himself as much of a master of it as he could be. Six interviews are the bulk of the book -- each accompanied with pictures from his life. This is also a brief collection of his art and an interview with his partner. Three years after this book, Bob Flanagan's body would give out and he would pass into a better world where I hope that the only "pain" he feels are those that are good for him. It is a moving and distrubing account of his struggle with illness and his attempts to make the world more aware of and accepting of others like himself.

5 comments about Thanks for the Mammogram!: Fighting Cancer with Faith, Hope and a Healthy Dose of Laughter.

1. Breast cancer is a big deal. Serious stuff. Many women die from it. Other women endure masectomies. Why make light of such a heavy topic? Simple: humor is healing.
   
   Laura Jensen Walker has something to say about breast cancer. She's a survivor. She has faced this beast, and now is able to articulately help readers smile in the midst of a tough time.
   
   In "Thanks for the Mammogram!" Jensen tells her story. Most of the book details a narrative of her diagnosis, treatment and how she survived. However, in reflecting through the most difficult of moments, she draws us in ala Erma Bombeck into candid silliness. It is as practical as it is funny.
   
   Boldly bringing humor into a discussion of cancer marks this book as a standout among its peers. Having lost my mother to lung cancer and flipping through too many solemn tomes of pop-psychology, I read through Jensen's book refreshed. I wished my mom could've read this book. At a certain point, cancer is cancer, and anyone with any cancer would enjoy "Thanks for the Mammogram!"
   
   Each page is a different view of her situation. For example, she spends a delightful chapter on the end of her chemo, and how she and her husband (a 'Disnoid') celebrated this landmark at Disneyland. We read of her struggle to find a decent book to read (unless Mickey Mouse's various adventures appealed to an adult woman, that is).
   
   The chapters are in very chewable chunks--none too long.
   
   With chapters like, "To Baldly Go Where I've Never Gone Before" (a consideration of Capt. Jean Paul-Luc Picard, Michael Jordan and other sexy baldies, she looks for the upside of a hairless head), you, like me, might find a new way of seeing what so many people go through.
   
   She admits her fears, but pushes also the benefits of having a realistic, yet positive view of dealing with breast cancer. Jensen explains her husband's point of view in the whole matter (even letting him write a chapter, "Her Body, His Pain"). She walks the reader through the process, citing how she related to people who had or didn't have cancer.
   
   I fully recommend "Thanks for the Mammogram!" by Laura Jensen Walker. It is a very worthy gift for those whom you love who have cancer, or know someone who does.
   
   Anthony Trendl
   editor, HungarianBookstore.com



2. I have never been diagnosed with breast cancer, but I am certain anyone facing this disease would want a copy of Laura Walker's "Thanks for the Mammogram." Mrs. Walker remarks that this book was the hardest thing she ever had to write. Like any good memoir, it takes in the uncomfortable, even embarrassing moments as well as the lighter and uplifting ones.

   Walker includes a lot of detail, from procedures like reconstruction, chemotherapy right down to the day-to-day patient care and how she felt emotionally. But this is not a gruesome story--instead it is intended to help anyone else along the road to recovery. The best chapter "Where do I go from here" gives eight important points (such as taking charge of your treatment, talking to your family, dropping the Wonder Woman cape for women who do it all) and also useful addresses and a list of books.

   This book is interesting reading for any woman, but if you have a loved one facing this challenge or if you are a woman who has been diagnosed with breast cancer, you should get this book. Nothing I have read comes close to this book for frankness and assistance.




3. This is an incredible book. Laura Jensen Walker has beautifully and sometimes humorously, written about her breast cancer journey. I read this book in the hospital following my breast cancer surgery (3/01) and have been very inspired by Laura's writing. This is the first book I loan out to others when they are first diagnosed. I highly recommend "Thanks For The Mammogram" !!
   Karen Lange, Asst. Mgr., FriendsInTouch.net (an online breast cancer support site)



4. "Almost everyone - whether it's your friend, neighbor, coworker, wife, mother, or sister has been touched by breast cancer. The cancer survivors I've talked to over the years say that what helped them through their ordeal was faith and often humor." ~Laura Jensen Walker
   
   What is more healing than laughter when you are faced with a situation you can't control? Even science has shown the healing power of laughter. Cancer isn't funny, but somehow the author finds a way to heal through her own vibrant wit. Many of the chapters are rather serious until the end when she gives the punch line.
   
   This is a book about courage, hope and humor. Laura Jensen Walker demonstrates her ability to face the challenge of cancer and fight it with faith, hope and "mild/laid back" humor.
   
   I learned a lot about reconstruction, chemo and was amazed at how Laura's husband stood by her through the entire process.
   
   "How to Lose Thirty Pounds in Thirty Days: The Chemo Diet Way. The original Slim-Fast liquid diet. (But not one I'd recommend.)" was an interesting chapter to be sure. This spells it all out, tells you what chemo is all about and it isn't fun especially if your nurse forgets to give you "zofran." Yes somehow Laura finds a way to appreciate the effects of rapid weight loss even when it is the result of chemo.
   
   If you want to understand what a cancer survivor goes through, this is the book. I recently read "Knowing Stephanie" which I can also recommend for the detailed information and pictures.
   
   The last chapter on what really matters was also quite inspirational.
   
   You may also enjoy:
   
   Mental-pause
   Through the Rocky Road and into the Rainbow Sherbet: Hope & Laughter for Life's Hard Licks
   
   ~The Rebecca Review



5. This book is awesome! I had breast cancer over 3 years ago. Several friends tried unsuccessfully to find "good reads" to help me along my road. I found this book recently and loved it! It is an actual experience with truth, humor, and insight. I have gone to Amazon to find as many copies as I can. I want to be ready to hand someone a copy if the need arises. Be prepared to shake your head in agreement, laugh outloud, heavy sigh, and cry.

5 comments about Spelling Love with an X: A Mother, a Son, and the Gene That Binds Them.

1. Clare Dunsford's book is a moving, beautifully written story about her and her son JP's journey with Fragile X, the most common inherited cause of mental retardation. Dunsford defly weaves science, poetry, and wit through her personal story. This book will resonate with anyone who has a child touched by Fragile X, autism or any other cognitive or genetic disorder. But this book's reach goes far beyond the world of Fragile X. Anyone who loves memoir or who is interested in exploring the depths of a mother's love, a family's interconnectedness, and the human soul will discover they can't put this book down.



2. Clare Dunsford's book is an unusual blend of personal memoir and scientifically researched information drawn from a mother's poignant journey raising a child with Fragile X. Dunsford's book blends poetic elegance with important up to date information about her son's genetic condition, a useful read for anyone living or working with children or adults with any developmental disorder. As a special educator who is also an avid reader I was fascinated. Further, I learned of the relationship that this disorder may have to autism which has touched my extended family and of the hope that the future of medical research holds for all those affected by developmental conditions. Ms Dunsford tells her story with strong emotion and wonderfully crafted writing but does not stray from her goal of sharing the knowledge base she has been accumulating over the 21 years of her charming and interesting son's life.



3. This book is still with me. Those are the best kinds of books, I think, the ones that you remember well after reading them. I think it's because "Spelling Love With An X" resonates beyond its specific circumstances. It's not just about Clare Dunsford and her son, but in some way every parent and child. Or, really, every relationship. As Dunsford wonders aloud at one point in the book, since her family carries the gene, is it possible this or that relatives slight eccentricity is really just an extremely mild manifestation of Fragile X. In other words, most brain disorders are merely exaggerations of characteristics we all understand to some degree. We are all on a spectrum of varying consciousness and need. As a result, Dunsford's exploration of the extreme challenges she faces with her son are more than just a faceless "case study." They do what literature should do at its best. They make her and her son's situation universal.



4. As a parent of a son with Fragile X who is a couple of years younger than Ms. Dunsford's son, J.P., we've experienced the despair as well as the joy she writes of. Her story is beautifully written and shines with the love we have and hope we need for the future for our adult children. She is able to describe the charming, witty character of her son in a way that rings true for parents of children with Fragile X. It's her own story as well. Life as a carrier of Fragile X has its own challenges - ones you might believe are your own character faults - until you find out, at whatever age, that you are a carrier and that the personal battles you've fought for so long are the result of a genetic defect you were born with. The science is helpful. The research is hopeful. Parents, family, carriers, friends should read this book to get a good look at life with Fragile X.



5. While informing us about Fragile X Syndrome, Clare Dunsford reminds us in a distinctive voice that much more than genes binds us. Her well-told tale captures the complexity of competing realities running through most of our lives -- identity, vocation, family, faith, parenthood (and the profound difference between motherhood and fatherhood), friendship, support, loneliness and love. So we laugh, cry and rejoice with her as she recounts the frustrations and surprises of her childhood, romances, career and parenting experiences. Her references to classic literature make manifest the mystery encountered in human differences no matter the time or culture, a mystery best understood in the binding of body and spirit despite the fragility of either. "Spelling Love With an X" is a classic love story. Dunsford's X is her and her family's cross (a cross that marks others' lives in other ways) and is only made bearable in anyone's life by Love which is more Divine than human. Her story offers hope to all of us who want to live and love well.

5 comments about Tumbling After: Pedaling Like Crazy After Life Goes Downhill.

1. As the wife of a quadriplegic I was very interested to see what Susan Parker had to say about her life. The description of the devastation, hopelessness and helplessness women feel when they come into this situation was excellent. The potrayal of the feeling of being totally overwhelmed and burned out by the intensity of it all was very real to me.

   This is where the excellence of the book ended. It was extremely redundant, telling almost the same story over and over with a slightly different twist. I was quickly bored. It was obvious that it was a collection of short antecdotes written for her newspaper column and not a cohesive book. I was determined to finish it and was only able to tough it out to the end because of the perseverence I've learned from being a Quad Wife.

   It was appalling to read that her husband is kept a virtual prisoner in the living room of the house they live in. No adaptations have been made since 1994 to make the rest of the home accessible to him? He has a life of watching TV? What is that all about?

   I am also wondering why a woman who says she is intelligent did not seek out the available programs which provide excellent, in home assistance to people with disabilities. Had she taken advantage of such programs, both she and her husband would have much improved lives.




2. I am sorry it took me so long to discover this book. I have been a fan of Ms. Parker since I first began reading her columns in the SF Chronicle. This book is one of those you want to read slowly so that it lasts longer but find you can't put it down. Susan has a wonderful knack for untainted honesty as she reports on the universal joys and sorrows of human life. She guides the reader into her world without trying to assign blame or seek justification, a truly refreshing approach in this day and age. Can't wait for the sequel! -Cindy



3. I disagree with many of the reviews. I found the tone of the book to be somewhat self-pitying and monotonous. Strangely, the only review here I seem to agree with was written below by the wife of another quadiplegic.
   
   The most interesting aspect about this topic, the devastating accident and its immediate aftermath, are glossed over quickly in the first few pages. The remainder of the book is the author going, "Woe is me, look how my life has deteriorated." Don't get me wrong, I don't think I could have handled what she went through, but the book makes the wife more of a victim than the husband.
   
   There is nothing in the book about the husband's initial reaction to waking up and learning he was paralyzed after such an active life; virtually nothing about how he coped with the injury psychologically.
   
   One problem with this book is that the author tells the whole story from the standpoint of me, me, me. I understand how hard her life must have become in the wake of her husband's devastating accident, but I had a real problem with the fact that, according to the book, for the most part, the author parked her formerly active husband in the living room in front of the television like a potted plant and pretty much left him there.
   
   There is very little interaction described between the author and her disabled husband. The author goes on and on about how wonderful her husband's caretakers are, but treats the quadriplegic husband as a two dimensional burden. For example, Ms. Parker will describe in great detail some conversation or interaction she had with one of her husband's attendants, and then she throws in something like, "and we gave Ralph a sleeping pill, emptied his urine bag, put him to bed, and then [the attendant] took me upstairs and made love to me tenderly." I am no prude, and I understand the woman has needs, but I found the whole thing horrifying and insensitive.
   
   She parks the husband in a hospital bed in the living room, and then spends the next few years sharing a bed and sex life upstairs with his 60-year old care attendant. When the husband says he does not want to know how she satisfies herself sexually, she tells him anyway, saying telling him would make HER feel better. Who knows how the poor husband felt. He could hardly complain, since he is helpless without both the wife and the attendant.
   
   She says her old friends and life "dropped away," after the accident, leaving as her only social life, an odd assortment of lovable misfits that took care of her husband. The book gives the impression that, if one is rendered disabled, their only social life is going to be with their ex-con, ex-drug addict hired attendant [who also services the author sexually for years] and assorted neighbors.
   
   I did not find the book uplifing. I found it completely depressing. Usually when I love a book, I am sad when I finish it. This one I was glad to put down. If you want an inspiring book by or about dealing with quadriplegia and its aftermath, I highly recommend "Eleven Seconds" by Travis Roy [the former hockey player]; "Still Me," by Christopher Reeve; or "Miracles Happen" by Brooke and Jean Ellison.



4. Although I would have been interested in hearing more about her relationship with Ralph after the accident (their conversations, their ways of creating intimacy of a non-sexual way), I did appreciate Susan's honesty in telling HER story. There are obviously many paths to handling this kind of loss. I found her way to be beautiful and inspired. I wish her well now that Ralph has passed.



5. I really love the genre memoir when it catches me and absorbs me. This book was fair to begin with and fair at the end. I wouldn't recommend it to anyone.