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.
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Q: Thank you for this interview, Katherine Perreth. Can you tell us what your latest book, Making Lemonade With Ben: The Audacity to Cope, is all about?
A: 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.
Q: How did you come up with the idea?
A: 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.
Q: What kind of research did you do before and during the writing of your book?
A: Poring over more than a decade of the family calendars, my personal essays, what I call my Creative Cathartic Vignettes, and my husband’s notebook from 1996. Dan had recorded daily myriad details from Ben’s initial 40-day hospitalization: the emergency craniotomy, repeated tests and procedures, quotes from nurses and doctors, how we were supported and treated by staff and others, how we related to each other as a couple and a family, and his own thoughts. That notebook proved invaluable by bringing his voice to the story, and providing incredible accuracy. Understandably, my memory from that time is a spotty blur. Had it been left solely to my mind, one sentence would suffice for chapter one: I found Ben in a coma.
In addition to fact checking pertinent medical, educational, and institutional information via the Internet, one strange bit of research I conducted involved the weather. My freeze-frame mind remembered January and February of 1996 as brutally frigid. One of our local weathermen kindly sent me a link where I could check hour-by-hour weather details, including temperature. My hit-and-miss memory proved correct. For days during Ben’s two-week coma, we had hovered around zero, including one high of negative 14.
Q: If a reader can come away from reading your book with one valuable message, what would that be?
A: 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
Q: Can you give us a short excerpt?
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!”
Q: In your own experience, is it hard to get a nonfiction book published today? How did you do it?
A: With the help of a professional editor and an author’s group, I chose self-publishing. I am somewhat of a control-freak, borne of living a life where I have often felt I had zero control or choice. In order for me to write the book, I needed to retain complete creative control, including the book’s cover. I had always known what it would be. The picture of Ben running through a field with a butterfly net was taken by my mother. It’s always been a family treasure as it shows the right side of his body properly working, and encapsulates boyhood Ben BC (before coma): legs always on the go, often in search of insects.
Q: What’s a typical day like for you?
A: I juggle several “typical” days, working as an administrative assistant for an English school, reporting for my local newspaper, and leading a reminiscence writing class for older women. Somewhere in there I do laundry, just to stay grounded. Tai chi and yoga help, too.
Q: What’s next for you?
A: 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.”
Q: Thank you so much for this interview, Katherine. We wish you much success!
A: It was my pleasure!
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.
Katherine is giving away a Kindle Paperwhite!
- By entering the giveaway, you are confirming you are at least 18 years old.
- This giveaway begins April 21 and ends on July 1, 2014.
- Winners will be contacted via email by August 1, 2014.
- Winner has 72 hours to reply.
Good luck everyone!