With deftly wielded humor and heart-wrenching candor, Katherine Perreth vividly recounts the myriad physical, mental, emotional and spiritual repercussions stemming from her son’s massive brain hemorrhage. Seven-year-old Ben suffers numerous disabilities and, later, mental health challenges. Yet, love wins. Making Lemonade With Ben is a compelling Cinderella story tracing sixteen years of Ben’s life. It begins with the night a University of Wisconsin Hospital neurosurgeon saved Ben, and follows Ben through young adulthood. Although he encounters years of substantial obstacles, in 2011 his never-say-die cheery attitude and uber-outgoing ways ultimately carry him to Washington D.C. There he represents the Madison Children’s Museum, his employer, at a national award ceremony. Wearing his ankle-foot-orthosis with a smiley face on the back, Ben juggles one-handed everywhere he goes, accomplishing his life goal: “Make humanity smile.” Universal themes of perseverance and compassion encourage readers to contemplate contemporary issues: mental illness treatment, recovery and stigma, the role of intentional employers in the lives of those with disabilities, and the success that can occur when a community values all of her citizens.
1. Can you please tell us a little about Making Lemonade With Ben: The Audacity to Cope?
At age seven, my undiagnosed ADHD, loquacious son, Ben, experienced a sudden massive brain hemorrhage, stilling and silencing him.
Making Lemonade With Ben alternates between two timelines: 1996-2010, Ben’s traumatic yet often hilarious childhood, and the very sweet story from the fall of 2011. The Madison Children’s Museum hired 23-year-old Ben as a one-handed juggler, then selected him to represent the museum at a national award ceremony in Washington D.C. The First Lady typically and annually presents the National Medal for Museum and Library Service.
Although Making Lemonade With Ben chronicles Ben’s life, it’s also a study on my family, especially myself. The book details the physical, mental, emotional and spiritual impact Ben’s life wrought. I am so accurately portrayed that sometimes I feel as if I were Lady Godiva, minus the hair.
2. What was the hardest part of writing your book?
The most challenging part was immersing myself in the often-traumatic years of 1996-2010. I made sure that I rewarded myself regularly, kept up with my self-care practices, and whenever I wrote Ben through a particularly rough patch, ratcheted up the reward: pedicure, or in some dire cases, as when finishing Comaland, one-hour massages. Since I wrote Comaland twice, the first time without the aid of my husband’s invaluable notebook, I received two massages. Yes!
3.Do you have a favorite excerpt from the book? If so, could you please share it with us? From Chapter 3: What’s The Frequency?
Ben’s acceptance, at age twenty-two, in a mental health program called Yahara House (YH), provided dignity, structure, and pride. And relieved me of my title Case Manager Mom, a badge I’d worn with increasing despair for fourteen years.
Ben also volunteered very part-time at Madison Children’s Museum (MCM). Juggling one-handed, handling Earl the Eastern Milk Snake (especially thrilling, as he had given up his childhood dream of becoming a herpetologist), caring for chickens on the museum’s rooftop, and interacting with the general public and their children. Ben had found home, delivering one-liners to a steady stream of strangers, making them smile.
The near-simultaneous combination of becoming part of the YH community, and volunteering at MCM, had proved a rescuing one-two punch, knocking out Ben’s hopelessness, fear, uncertainty, low self-esteem, and a host of other negatives. Taking one arm each, they had hoisted him to his feet, and his mother along with him.
On Saturday, 9/10/11, I pondered our new lives while on one of my endorphin-seeking walks. Returning, I saw messages from the evening before flashing on the answering machine. One perkily communicated, “Hi, this is Eric, the Volunteer Coordinator from Madison Children’s Museum. I’d like to talk to you about Ben. Please call me, I’ll be around Saturday from noon until five.”
For 5,700 days, phone calls regarding Ben had often meant trouble of sorts. This one didn’t sound bad; Eric sounded upbeat. And Ben had recently interviewed for a paid position at the museum. He thought the interview went well. But why would staff call me? Breathe.
“Hi, this is Ben’s mom, Katherine Perreth. I’m returning your call.”
“Hey, great, thanks! Well, I just want to tell you the Broncos are playing Tuesday night at five.”
“The football game. It’s Tuesday, at five, so if you – ”
“Football game?” I interrupted.
“Yeah, the Broncos’ game is Tuesday night, at five.”
How could this be? Sure, the NFL season just kicked off on a Thursday night, but at last look they didn’t play Tuesdays. Besides, I’m a Packer Backer through and through, residing in Packerland, why would I care about the Broncos this early in the season? Were we evenplaying the Broncos this season? I didn’t think so. If this wasn’t about professional football, what game was it about? And why? Suddenly, I felt kindred spirit with poor news anchorman Dan Rather the night of his mugging in the 1980s. His attacker repeatedly demanding, “Kenneth! What’s the frequency!?”
Only no one was hurting me. Shaking cobwebs from my head, I stammered, “I’m… Ben’s mom?” (Since I knew perfectly well Ben was my son, what was the reason for that question mark?) “And he’s…uhh …what?”
“Yeah, your son, will you be driving him to the game?”
“Is this something I’m supposed to know about?”
For the first time Eric hesitated. “Uhh, the game? If you could have your son at the field by five?”
(Something definitely has to be done about this conversation, Kenneth.) “Listen, I’m really sorry. I have absolutely no idea what you’re talking about. I’m Ben’s mom, Katherine Perreth, and I thought you wanted to talk about something to do with the children’s museum?”
“Oh, man! I’m sorry. You’re that Ben’s mom? I just started coaching a team of eight and nine year olds…”
Now that we inhabited the same planet, I assumed the conversation would clarify.
“So, what I wanted to talk to you about is the, uhh, award. The museum, uhh, well it’s involving the mayor, uhh, and libraries and service. So it’s a very high honor. Michelle Obama will be, uhh, presenting it, and the Executive Director, Ruth, will be going to the, uhh, White House.”
(Kenneth, what the hell’s the frequency?)
“Yeah, so if you could uhh, write a letter on Ben’s behalf? Part of the award is, uhh, about how the children’s museum has changed somebody’s life, and uhh, Ruth asked if I could call you and see, uhh, if you could write a letter for Ben?”
“Sooo, umm, you want me to…”
A brief pause ensued while Eric-Kenneth explained he needed to park his car. At least I finally understood the reason for his stuttering sentence structure. Once parked, fully regaining his command of English, he made a wee bit of sense.
“Yeah, see, I know Ben really, really, really wants to work here, and he knows everybody and everybody loves him, and Ruth thought of Ben as someone whose life has been changed by the museum.”
(Bingo! Now we’re back in orbit.)
“She’ll be going to the White House to accept the award, and a person whose life has been changed gets to go too. Ruth thought if Ben went, maybe his mom would go along?”
Whoopa! Tripped up on Saturn’s rings. My voice suddenly gone from mystified, to non-existent, to choked. “Kenne-er…sorry, Eric, I’m a bit emotional here…if Ben…if Ben is chosen to go to the White House I can tell you right now his mom will definitely go with him.” (Wild horses.)
“So, could you write a letter on Ben’s behalf? Explaining how the museum has changed his life, so the committee can decide later this week or next?”
(Oh yeah, Kenneth, I’ve got thatfrequency covered!)“Eric,” I declared, “this is a far cry from the Broncos play on Tuesday. I can’t believe this. I just…I just told Ben…I’m sorry I’m emotional. I told Ben ten days ago…if he kept on…no matter what…being faithful, responsible, professional, cheerful, and hardworking he would be rewarded some day. Even if he doesn’t get chosen, just to be considered, what an honor.”
“We didn’t tell Ben about it, because we didn’t want to get his hopes up and then disappoint him. Ruth is also considering him for a paid position.”
“Unbelievable! Thanks so much for not telling him, and I won’t breathe a word.” Since Ben is overly acquainted with squashed dreams, their thoughtfulness pleased me.
After we hung up, I took leaps and bounds to inform Dan, vaulting myself to the backyard corner of refuge. Prefacing my disjointed speech with, “These are good tears!” as opposed to the vast majority flooding my world since 1996, I ended with, “Nobody leads the life I do, nobody.”
“Forrest Gump,” Dan deadpanned, adding a congratulatory smirk.
“Dang, that’s brilliant. I can’t believe I didn’t figure that out. And know what? If this happens, it’s the framework for The Book!”
4. What do you hope readers will take away after reading the book?
Mental illness is in the news every day, stigma firmly attached. Yet, in many ways, mental illness is just like physical illness. It’s nothing new, nothing to be ashamed about, is a global concern, and can be a killer – just like physical illness. Even if we can’t be “fixed,” the choices we make can either alleviate or exacerbate our illnesses – physical and mental. There is a measure of empowerment in that.
And powerful good can happen when a community values all of her citizens through intentional employers, like the Madison Children’s Museum, and by offering proper mental illness treatment. Ben’s life bears witness to that.
Ben is a member of Yahara House, our local Clubhouse model of mental illness treatment, support and recovery. I believe this approach, espoused by Clubhouse International, is critical. The Yahara House motto is: “Yahara House Works!” And it does. http://www.iccd.org
5. What was your writing process while writing this book?
Consumed by words. All day while writing, then while cooking dinner, much of the evening, and even upon waking in the night. Not healthy, it often felt like death by words, and not very respectful of my supportive family, but it got the job done. I simply could not linger for years in the subject. It did take about 18 months, 12 of them quite intense as I wrote, edited, and reorganized, repeat ad nauseam. Not everyone in the house was thrilled with my obnoxiously accurate reporting as I recorded fresh dialogue the fall of 2011 and how the trip to D.C. unfolded. My then-16-year-old daughter remarked snarkily, “Oh! Look, Mom. It’s another conversation, better write that down!”
I deserved it. (And we are friends again).
6. Who or what was the inspiration for the book?
After hearing just the bare bones of Ben’s story, people have often exclaimed, “I’ve got goose bumps!” So I knew it wasn’t just me who thought Ben’s life was a compelling feel-good story, underdog wins!
Then there were women asking me to write a book. I thought they were crazy. For well over a decade, I dwelled simply in familial and personal survival – albeit, sometimes it was non-functional survival.
Still, I attempted to write the story multiple times, but the subject matter behaved like personal kryptonite, sucking me down toward an abyss I never wished to fall into again. The phone call I received in 2011 from the Madison Children’s Museum changed everything, enabling me to write.
In addition, I wanted Ben to have a document that explained what happened to him as a seven-year-old.
One excellent, unintended by-product was that in the process of writing and organizing the book my heart was put back together.
7. Have you had a mentor? If so, can you talk about them a little?
Yes, my author’s group, my newspaper editor, and my husband. All have played an integral part as I developed my craft. The group and my editor gave me confidence to tackle writing a full-fledged book.
8. I have heard it said in order to be a good writer, you have to be a reader as well? Do you find this to be true? And if you are a reader, do you have a favorite genre and/or author?
Yes. I always say, “All readers are not writers, but all writers are readers.” Usually voracious readers. This has been the case in the reminiscence writing class I lead.
Although I read a wide range of genres, my favorite is mysteries – specifically, those set in England during the early to mid-1900s. Margery Allingham, Ngaio Marsh, and Dorothy Sayers are my British favs. Martha Grimes and Nevada Barr are my favorite American mystery writers. Laurie King, who has picked up the tale of Sherlock Holmes with a brilliant twist, is also high on my list.
9. Is there anything else you would like to share?
People are quite surprised, given my subject matter, how Making Lemonade With Ben made them laugh throughout. Although physical and mental illness are no laughing matter, my quirky brand of humor is one of my main coping strategies. Black, white and gray, I use them all to survive.
People always want to know what Ben thinks of the book that bears his name. “Flawless sprinkled with awesomeness,” is his answer.
After spending so much time together in medical facilities, generally not regarded as a laughing matter, Ben and I have strong rapport and make a natural comedic tandem. We’ve teamed up for inspirational public speaking with the goal of at least reducing the stigma of mental illness. We have spoken at libraries, churches, and service organizations, and recently gave the keynote for our local chapter of the National Alliance on Mental Illness (NAMI). This summer, we will lecture for the University of Wisconsin’s Department of Psychiatry Grand Rounds and deliver the keynote for our local school district’s staff-wide, back-to-school, pump-up meeting. That will be our largest audience thus far, about 800 staff. We are especially looking forward to speaking at the UW, my alma mater, and at our K-12 alma mater, giving our brand of entertaining, educational, and humor-filled encouragement.
Wherever we speak, Ben inspires with his words, charming disposition, and lemon juggling while sporting a smiley-face on the back of his ankle-foot orthosis. Ben embodies Yeats’ sentiment, “There are no strangers here, only friends you haven’t yet met.”
Katherine holds UW-Madison Social Work and Sociology degrees, is a reporter for her hometown newspaper, the Middleton Times Tribune, and conducts a class on reminiscence writing. In addition, in her role as administrative staff with WESLI (an ESL school on Madison’s capitol square), she deals in chalk. And paper. Oodles of paper. She recently took an EmptyNester Victory Tour with her husband of 28 years, but hasn’t yet changed the locks on their home. Their three kids can still get in. Her latest books is Making Lemonade with Ben: The Audacity to Cope Drop by to pay her visit at:www.katherineperreth.com.
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