Originally published as Knowing Jesse, this “fine and moving” memoir (Los Angeles Times) by actress Marianne Leone tells the uplifting story of her son’s life.
Jesse Cooper was an honor-roll student who loved to windsurf and write poetry. He also had severe cerebral palsy and was quadriplegic, unable to speak, and wracked by seizures. He died suddenly at age seventeen.
In fiercely honest, surprisingly funny, and sometimes heartbreaking prose, Jesse’s mother, Marianne Leone, chronicles her transformation by the remarkable life and untimely death of her child. An unforgettable memoir of joy, grief, and triumph, Knowing Jesse unlocks the secret of unconditional love and speaks to all families who strive to do right by their children.
|Publisher:||Simon & Schuster|
|Product dimensions:||5.50(w) x 8.10(h) x 0.90(d)|
About the Author
Marianne Leone is an actress who appeared in The Sopranos, a screenwriter, and an essayist published in The Boston Globe. She lives in Massachusetts with her husband, actor Chris Cooper, and two rescue dogs.
The Jesse Cooper Foundation funds inclusion and adapted sports for children with special needs, and supports disabled orphans in Romania.
Read an Excerpt
All summer and fall I had been troubled by a dream I couldn’t interpret. My mother, who had died that spring, appeared as a silent sentinel dressed in white, seated next to a café table covered by snowy linen on which one small candle burned. Like a sphinx, her face was inscrutable but not disapproving. She was eerily still and seemed drained of the passions that inflamed her in life—the hardwired resentments, the black humor that saw death lurking around every corner and met it with a sneer, a laugh, and a vaffunculo.
The candle tipped over and fell behind the table. I reached for it and the candle disappeared, falling through a hole in the floor that magically revealed the candle lighting millions of others. The light grew into a conflagration that did not harm but instead inspired awe in its magnitude, intensifying until the entire dream universe became a white-hot void.
The dream finally made sense on the morning of January 3, 2005, when I went in to wake up my son for school and found him dead in his bed. Everything in my universe was blotted out.
Journal, spring 1989: “Someday I know I’ll find him dead in his bed.”
How did I know this? I just knew. When I saw him lying there like a sleeping prince, his beautiful full lips tinged blue, I knew. I knew when I pulled up his eyelids and saw his huge brown eyes fixed and staring, I knew when I screamed for his father and watched him give CPR. And when he said, “Call nine-one-one,” I knew. My son was wearing his T-shirt that read “Anime fiammagente”—souls aflame.
Jesse’s small flame had joined the many.
The fates lobbed a medicine ball at my chest that January morning, and it’s still lodged there, covering my heart in the spot where Jesse used to rest his head. It’s hard and unyielding, too, the way his head would jackhammer against my chest during a seizure. Jesse had severe cerebral palsy and could not speak. He was also a straight-A student, a sophomore at his public high school who wrote poetry on his computer, aced every one of his Latin tests, and windsurfed in the summer.
That many people only saw Jesse’s disabilities adds another dimension to grief, a surreal aspect to the isolation of my new altered state. Their perception is “It’s for the best,” or “He’s free now, and so are you.” But I would have gladly hefted Jesse’s undersized frame for as long as my own body could tolerate the weight, and beyond, into my own infirm old age. My husband, Chris, and I used to joke that if we were to appear on an afternoon talk show, the legend at the bottom of the TV screen would read, “Tragic parents of severely handicapped child.” But that’s not how it was.
“My family is fancy . . .” —Jesse Cooper
© 2010 Marianne Leone
Reading Group Guide
This reading group guide for Jesse: A Mother's Story includes an introduction, discussion questions, ideas for enhancing your book club, and a Q&A with author Marianne Leone. The suggested questions are intended to help your reading group find new and interesting angles and topics for your discussion. We hope that these ideas will enrich your conversation and increase your enjoyment of the book.
Jesse Cooper was an honor-roll student who loved to windsurf and write poetry. He also had severe cerebral palsy and was quadriplegic, unable to speak, and wracked by seizures. He died suddenly at age seventeen. In Jesse: A Mother’s Story, Jesse’s mother, Marianne Leone, shows readers that despite challenges along the way—including her struggle to integrate Jesse into the public school system—life with Jesse was more rich and joyful than anyone could have imagined. In his short lifetime, Jesse lived life to the fullest and brought unbelievable happiness to everyone he met. Jesse is a heartbreaking, spirited, and poignant memoir, in which Marianne writes passionately about her family’s journey—the hope, challenges, grief, and love.
TOPICS & QUESTIONS FOR DISCUSSION
1. Jesse is filled with humorous scenes, such as when Jesse kicks a monk who is trying to bless him. Discuss the tone of the book and how Marianne was able to infuse her story with moments of levity and hope. Were you surprised by the comical moments in the book?
2. From a struggling actress in Hell’s Kitchen to a disability advocate in small-town Massachusetts, Marianne becomes a very different person by the end of the book. How does she change throughout the course of Jesse’s life? Can her transformation be solely attributed to Jesse, or are there other factors at work? What did Jesse teach Marianne?
3. How do Jesse’s poems provide insight into his thought process and his perspective of the world? How did he perceive himself and the challenges he faced? Which of his poems affected you the most? Which one provided the most insight into who he was as a person?
4. At Jesse’s memorial service, Marianne says that “parents of disabled children are ‘touched by the Divine.’” (pg. 11) What do you think it means to be “touched by the Divine?” How have you been “touched by the Divine?”
5. Jesse writes, “Courage is like one ant trying to cross a roaring stream. It may seem impossible but you have to try.” (pg. 135) How does Jesse demonstrate courage throughout his life? How does Marianne encourage this character trait in her son, and how does she embody this spirit herself?
6. When Jesse is in first grade, Marianne exchanges daily notes and journals with his teacher. Despite her growing frustration, she says, “I continued to write cheerleadery rah-rah responses to Jesse’s teacher’s misspelled messages.” (pg. 177) Why does Marianne initially alter her personality when dealing with Jesse’s teachers and aides?
7. Why is Jesse’s school so resistant to Marianne’s efforts to improve Jesse’s experience in the classroom? Were you frustrated by the difficulties Jesse faced in school?
8. Who does Marianne turn to in difficult times? How does she create and maintain her support system? Who are the people in your life that you turn to for support?
9. Marianne is a self-described “rageaholic,” and even experiences blackouts at times when she is extremely angry. What incites her rage the most? How does she use her rage to her advantage, and when does it hurt her?
10. Throughout Jesse’s life, several female caregivers enter the Cooper household and teach, tutor, and help Jesse. Describe the bonds that form between Jesse and the women and between Marianne and the women. How do these women affect the family?
11. Despite the difficulty of parenting a child with disabilities and the physical separation that was often required for Chris’s acting jobs, Marianne and Chris’s marriage remains strong throughout the book. How is their relationship affected by Jesse’s disability? How do they handle the stresses that come along with fighting for their son’s right to attend school?
12. Marianne says that she “sees” Jesse in the strangest of places, from an old man praying in Naples to a hawk flying in the sky outside the hospital. When and how does Marianne see Jesse? Why does Jesse take the various forms that he does?
13. In Jesse’s last poem, he wrote, “The world is my book / I hear all its voices.” (pg. 29) What do you think he meant by that? How does Jesse communicate with the world, and how does the world communicate with him?
ENHANCE YOUR BOOK CLUB
1. Get involved! Host a charity event—bake sale, yard sale, or 5K run—and donate the money to a charity, like, www.cerebralpalsy.org, www.ucp.org, or find the parent-to-parent disability org in your state. You can also donate to the Jesse Cooper Foundation. Visit www.marianneleonecooper.com for details.
2. Spend an afternoon volunteering with children who have disabilities or any other cause about which you feel passionately. Visit to www.volunteermatch.org, www.serve.gov, or www.dosomething.org/volunteer to locate volunteer opportunities in your community.
3. Marianne becomes an advocate for Jesse and his right to attend school like any other child. Discuss a time in your life when you felt so passionately about something or someone that you were willing to do whatever it took to achieve your goal.
4. Although he often struggled to communicate verbally, Jesse’s writing is full of life. His poems display a wealth of emotions and keen observations of the world around him. Write a poem about something you have struggled with in your life and share it with your group.
A CONVERSATION WITH MARIANNE LEONE
In the acknowledgments section, you talk a little about the writing process for Jesse. What made you decide to write the book? Was it difficult to share your story? Did you ever want to quit, and if so, what made you keep going?
I wrote an essay for The Boston Globe about three months after Jesse died, and the book grew out of that essay. At the end of the essay I quoted Jesse’s first poem, “Inside/Outside” which had the lines “On the inside I speak,” and “On the outside I give.” In the closing lines of the essay, I wrote, “So I’ll walk on the inside and give on the outside. But I can’t be mute. I think Jess would understand that I have to give sorrow words.” ‘’The grief that does not speak whispers the o’erfraught heart and bids it break” (Shakespeare). Shakespeare gave voice to the human condition better than anyone. The pain of loss compels the writer to “give sorrow words” to deal with that pain. The only difficult part of sharing this story was the reliving of the battle to have Jesse included in his local public school. I felt again the despair and rage at the unfair way Jesse was treated, and anger at my own incompetence and slow learning curve in this brave new world of special education.
What made me keep going was the desire to share with others the impact this nonverbal child had on so many people around him. Despite the agony of reliving his struggles, I also experienced the utter joy of Jesse’s company in writing this book and that helped me keep going.
Can you describe the responses you have received from the book? Has anything surprised you?
I have received scores of heartfelt letters both via snail mail and as e-mail comments on my blog at www.marianneleonecooper .com. Many have been moved to enclose a donation to the Jesse Cooper Foundation. So many of the readers who wrote me (and they were mostly mothers) talked about snatching precious moments of time while waiting for a nurse to arrive or checking to see if their child was still breathing. They told me how much this book and Jesse’s story resonated with them. These letters moved me to tears and brought me instantly back to my own stolen minutes of writing time when I was acting and writing and being Jesse’s mom. I got a letter from a thirteen-year-old girl who went to Jesse’s school and whose teacher had directed the class to read a book about a person with a disability. She said she wished she could “hand the book to every person in the world so they could know about Jesse.” More than one person described the book as a “love letter” to my son, which made me happy. The educators and therapists who wrote gave me hope, especially the ones who said they would never look at a child like Jesse in the same way again. And there were even funny letters, like the one that told me my book should come with a warning label: “Caution! My son’s a charmer and you will be in love with him for the rest of your life.”
From your upbringing in the Catholic church to your decision to teach Jesse about all the world’s religions, can you talk about your faith and the role it played in your life with Jesse?
Jesse was my spiritual teacher. I learned about unconditional love from him. I don’t know if you could exactly call that having a faith, unless you think of it as having faith in the power of unconditional love to transform us all into our best selves. I am, in the words of Jackson Browne “a heathen and a pagan on the side of the rebel Jesus.”
What is your happiest memory of Jesse?
There is no one happy memory frozen in time. My memories feel more like navigating a river that flows from the sweet trill of Jesse’s giggles to the silky feel of his skin to his smile of triumph at doing well on a school test—that’s on a good day. On a bad day, the river freezes over and I’m trapped in the memory of finding him dead.
How are you continuing to work with parents of children with disabilities and cerebral palsy? Have you continued to work with the school district in your area? What changes have been made since Jesse?
For the seventeen years I was Jesse’s mother advocating for his inclusion, I was also a writer and an actress. I honestly think that in my case it made me a better mother to keep a part of myself that was not only Jesse’s mother. I continue to act when I can, and to write. But I am not a full-time advocate. I hope that this book serves as an inspiration to educators. I am motivated by the words of a teacher who wrote, “I will never again look at a child like Jesse in the same way after reading this book.” I plan to visit universities and talk to future teachers, therapists, and social workers about inclusion and working fruitfully with parents to achieve their disabled child’s goals at school.
What advice would you give to parents of children with disabilities who are feeling discouraged and frustrated with their schools or doctors?
Turn on the radio to your favorite music, blast it, and dance with your child in or out of a wheelchair. When they laugh, use that laughter as fuel to keep going. Remember that you are your child’s strongest advocate. Seek out the parent-to-parent organization in your state (every state has one; in Massachusetts it’s the Federation for Children with Special Needs) and ask for help from other parents who’ve been there. Meet with them and take strength from your unity.
Other than your husband, who was the person you leaned upon most while Jesse was growing up? How did you maintain such a strong network of support around you at all times?
Both my and Chris’s family, though geographically distant, were always there for us. Also our friends, who were mostly single and childless with the exception of one couple, but all of them were willing to babysit Jesse so we could have a night out. We made sure to have a date night every week, even if it was just a quick dinner in a local diner. When Bernadette, Jesse’s first wonderful nanny, came on board, we travel more easily and even had our first weekend away alone together. Suzanne was with us only a year, but her warmth and kindness helped our transition to a small New England town. Then Brandy was with us for ten years, until Jesse died. She was like a big sister to Jess and a daughter to us. We are still in close contact with the circle of caregivers and therapists who were part of our family. I don’t know how to explain this except to say that Jesse’s light drew us in and the memory of that light keeps us together.
Can you share more about the Jesse Cooper Foundation and the work that you are doing now?
The Foundation is really very small, and so far only in Massachusetts (and Romania!). We receive small contributions from people who’ve read about us, and Chris and I are the biggest contributors. I am tithing myself ten percent of the proceeds from this book for the Foundation. It would be bigger if it were my full-time pursuit, but both Chris and I are mainly actors and writers. The Jesse Advocacy Fund administered through the Massachusetts Federation for Children with Special Needs helped twenty-one low-income, non–English speaking families include their disabled children last year by providing advocates to assist the parents. The Jesse Cooper Foundation helps the Romanian Children’s Relief Foundation, specifically the program which supports the disabled children and teenagers’ health conditions and the facilitation of these children away from institutions and into foster and group homes. The Romanian Childrens’ Relief Foundation also provides therapy, educational, social, and recreational activities, and works to enhance the awareness and acceptance of disabled children in the community. AccesSportAmerica specializes in windsurfing, kayaking, rowing/sculling, outrigger canoeing, surfing, water-skiing, and kite sailing, as well as rock/wall climbing, tennis, cycling, and soccer. Programs are designed to promote each person’s highest physical and athletic potential while cultivating social and emotional well-being. The exhilaration inherent to each sport is just a part of the experience which fosters positive change in function and fitness as well as attitude and expectation for a life lived with a disability. Athletes, through individually developed programs, experience a series of unparalleled accomplishments through mastery of balance, coordination, and fear. Over 1,500 athletes participate annually year round in Massachusetts.
What is the most important thing that Jesse taught you?
Patience, and the ability to look beyond the superficial. Jesse taught me to go deeper, face fear and develop the focus of a warrior. I will be grateful for those gifts for the rest of my life.
What is the one thing you would like readers to remember about Jesse?
I think Jesse’s poems showed how he wanted to present himself to the world. “On the inside, I speak.” “I am a poet. I speak through my poems / And people listen.” And in his sixth grade autobiography he wrote, “The most important lesson I can teach is to see people for what they can do and not for what they cannot do.” I think he would be most pleased by the number of readers who saw him as a typical, mischievous teenage boy.
Most Helpful Customer Reviews
This book is just what I needed. I had a brother with Cerebal Palsy and he was the joy of my family lives. We lost him from a seziure a few weeks ago. I was so lost and did not understand why this happened. When I read Knowing Jesse this book reminded me of my brother and what my family went through. I thought we were the only one who had gone through this type of situation. Marianne writes this book with passion. I gave this book to my Mother and she could not stop talking about it and she said this book could be her life. My mother went through the same difficulties as Marianne. Thank You Marianne for helping me through our hard times.
This book was suggesred to me by my daughters occupational therapist! My daughter has a rare syndrome called macrocephaly capillary malformation. And much like Jesse she too faces seizures, mobility and non verbal behaviors such as hand flapping, outburt etc! This book for me gives a honest account of the first time you meet the disability head on, it really is fight or flight. This book gave me the words i needed to see in print. Marianne gives great narration to the struggle, the calm and tge love between mother and child. The book takes you for a ride tgat if you are currently not on bybthe second chapter you will. You fall in love with them. And you wish you has a cregiver like they did with Brandy. Overall a wonderful book tgat i read when my hope has left the building.