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Tuesday, April 5, 2011

Rescue Monkey Becomes Helping Hand After Man’s Accident

Six years ago, Ned Rogers was a 22-year-old college student in Arizona when he was in a catastrophic car accident that left him a quadriplegic and severely brain damaged.

Eventually, Ned was able to return to his home in Concord, Massachusetts, but his mother Ellen Rogers, who has four other kids, needed help caring for him. She turned to Helping Hands, a nonprofit group that trains and supplies monkeys to help the disabled, free of charge.

We visit with Ned, his mom, and Ned’s care monkey, Kasey, to learn how this primate personal care attendant has helped Ned cope with his disabilities, and brought hope and laughter back into the Rogers’ family. The Rogers’ memoir about their experience is called “Kasey to the Rescue: The Remarkable Story of a Monkey and a Miracle.”

Book Excerpt: Kasey to the Rescue: The Remarkable Story of a Monkey and a Miracle

By: Ellen Rogers

I consider myself something of a tragedy snob.

Having lived through some pretty terrible losses, I’m not easily undone. When I was 24, I got married in a hospital sunroom down the hall from the surgical ward where my father fought for a few last months of life. My husband, Ted Sullivan, was diagnosed with cancer when our daughter Megan was 2 and I was pregnant with our second child, Ned. Our little family soldiered on through Ted’s grueling treatment and the long, sad hospice days before his death. When Megan was 4 and Ned 18 months, their father, my husband, was gone.

A second marriage brought two beautiful stepdaughters, Kerry and Mindy, plus my three youngest: Jake, Maddie, and Anna Kokos. But our blended family unraveled after Mindy died at age 23 of melanoma. That world-rocking loss was followed by a bitter divorce. Somehow I’d managed to get us into a new house, juggling everyone’s activities with the demands of my business. Things were looking up. The younger kids were doing well in school. Ned was thriving as a senior at the University of Arizona, and we had all been rewarded with the joy of Megan’s wedding to true-blue cop Ron Holsinger. A miracle of modern love and a high-flying trapeze act of daily logistics, the Rogers-Sullivan-Kokos-Holsinger family was doing okay.

And then the phone call.

“Are you Edward Sullivan’s mother?”

Something about the way she said it. I could tell our world was about to fall apart.

“Your son’s been in an accident.”

Extensive injuries. Condition grave. Come immediately.

Walking into the ICU late that night, after two insanely tight flights from my home in Boston to the hospital in Tucson, I expected the spiderweb of tubes and IV lines. The apparatus of life support was nothing new to me, so I figured I was prepared for what was to come. But when I saw the medieval torture device that encompassed Ned’s head, I had to steady myself on the bed rail.

“What…what is that thing?”

“It’s called a halo,” said the nurse. “They put it on in surgery to secure his head to his neck.”

I damn near fainted.

The doctors delivered the news: “Major brain trauma, C1-C2 fractures, shearing… There can be no expectation of functional recovery with a devastating injury like this.”

Devastating. The word hit like a wrecking ball: to overwhelm…to render desolate…to lay waste. I listened and nodded, but I couldn’t accept it.

Not for Ned. Not my son.

Ned was strong and fit, a lifelong athlete, and one of the most motivated people I knew. As a kid, he’d driven us crazy with his collection of hoo-rah! inspirational sayings.

“Mom,” he once admonished when he found me watching Project Runway instead of unpacking groceries. “Procrastination is the thief of time!”

Now, seeing him so damaged, I scrolled through my memory, searching for something from his catalog of wise sayings that approached the gravity of this situation.

I reached through the halo and stroked Ned’s stubbled cheek.

“Winston Churchill,” I whispered. “When you’re going through hell…keep going.”

High-risk surgery was required to secure Ned’s head to his spine. His body was so compromised that he might not survive the operation. “What would you do if this were your son?” I asked one of the doctors.

“I’d fly him back to Boston for the surgery to be near his family. He’ll need all your support. Then I’d get him to a spinal cord injury specialty hospital like the Shepherd Center in Atlanta as fast as I could.”

A few weeks later, I was face-to-face with the surgeon at Massachusetts General Hospital. “It went well,” he told me in the exhausted post-op hours. “He’s stable. Doing as well as we could have expected.”

“Thank God,” I said and released a breath. “So now…what?”

“Now we watch and wait,” he said.

My least favorite mandate. I’m neither a watcher nor a waiter. My response to any situation is Do something.

I spent every day at the hospital, and when I left at night I told myself that Ned was in the care of the best doctors and nurses, that he was not alone. But I knew better. Ned was utterly alone. This man who would forever be my little boy was adrift in the dark—unable to speak or move or breathe—one blink for yes and two for no was all he had. My boy—my articulate, charming, “I can do anything” boy—couldn’t even say anything.

Eventually the swelling from the injury and the surgery began to recede. Ned tried to mouth a few words when he had the strength, but the movement was so minimal, it was impossible to read his lips. The effort was excruciating, so we developed an alphabet card system where I’d run a finger across the letters until he blinked a “stop” signal, then start over again, running a finger to the next letter, spelling out brief, stilted messages:

M…O…M…

“I’m here, Ned. I’m here.”

H…U…R…T…B…A…D…

“I love you, Ned. We all love you.”

H…E…L…P.

Tiny signs of improvement gave us courage. One day Ned miraculously took a breath without the ventilator. It was a lifesaving device, and we had been so grateful for it, but when the day came that Ned could breathe on his own, we were happy to get rid of it. Ditto for the medieval halo. Once that was removed, Ned could be hoisted over to sit in a chair to look out the window. His world was expanding now. He even went outside to get his first breath of fresh air in weeks.

These steps forward, along with antidepressants, seemed to pick up his spirits. He’d give a little smile to the nurses and mouth “Thank you” when they came in to help him. One day, he made a “kiss” with his lips when I was leaving. Later, for the first time in many months, Ned would speak. It would be sudden and surprising and I would rejoice like I had when he uttered his first syllables some 20 years before. Though he didn’t sound like himself, the effort was pure Ned. It was the best “Hi, Mom” I’d ever heard.

Three months after the accident, we medevaced Ned to the Shepherd Center in Atlanta. Until now, the hospitals had been about saving his life; Shepherd was about getting on with it. He gave his all in physical and occupational therapies. Ned was introduced to a wide range of possibilities including assistive technology to access a computer, and a sip-and-puff device to drive his wheelchair. Meanwhile, I was learning to use a Hoyer lift to transfer him from his bed to his shower chair or wheelchair and to manage his feeding tube. It was hard for both of us. We tried to reimagine our lives. Ned was determined, and despite grueling days, nerve pain that no drug was able to beat down, and pockets of despair, we all kept pushing forward.

It’s funny how you get used to things, how after a while even the arduous routine of a hospital can seem reassuring. I had never thought of it in those terms, of course, until the day our Shepherd case manager told me we needed to firm up a discharge plan.

Discharge plan? Ned couldn’t walk, he could barely communicate, and his beautiful young body was racked with pain. How could we possibly take him home? I was the sole breadwinner, so I had to get back to work. We were running on empty as it was. There was no way I could take care of Ned myself. He needed to be fed, shaved, showered, transferred to his wheelchair, taken to therapy—wait, did I need a wheelchair van? Ramps to get in the house? Skilled people to help with his medical needs?

Check. Check. Check.

Suddenly, and not for the first time, I was overwhelmed by the foreverness of the injury. “Okay,” I told the administrator, without a glimmer of a plan. “We’ll bring him home.”

Home is where the heart is. It’s also where the teenagers live, the married daughter comes to visit, and the college son comes home with his dirty laundry. And let’s not forget the dogs. I’ve tried to maintain an attitude of There’s always room for one more, but—one what?

When we were at Shepherd, the hospital staff had introduced us to an organization that trained assistive dogs for wheelchair-bound people. They brought a magnificent trained Lab. Ned wasn’t interested.

“We…have…dogs,” he said flatly. His speech was slow and monotone.

“I know, but…” I had another idea. I knew it might sound ridiculous. Still, it was worth a try. “Didn’t we once see something about trained monkeys? I’m serious. I saw it on 60 Minutes or something.”

Ned rolled his eyes and rasped, “Mom, try to get…a couple of…those flying monkeys…from The Wizard of Oz. Maybe a cowardly lion, too.”

“You’re hilarious. See you later.”

Back at the hotel that night, I checked my e-mail. Scrolling through my in-box of encouraging notes, I came to a message from Maddie and Anna’s school.

“Oh!”

I read the message again. “Dear Parents, You are invited to Friday’s assembly where Helping Hands: Monkey Helpers for the Disabled will be visiting.”

I’m a pragmatist. But I couldn’t help thinking this might be a sign.

A little more than a year later—after an understandably long and intricate application process—Megan Talbert, the executive director of Helping Hands, was standing in our living room, introducing us to a 21-year-old capuchin monkey named Kasey.

“Bonding is the key to everything,” she said, as Kasey leaped gracefully to Ned’s shoulder.

“She’s beautiful,” he said softly.

“I never thought I’d use the word elegant to describe a monkey,” I said. We greedily soaked up every detail that we could about Kasey.

“She weighs about five pounds—the perfect size for her job. She was a star at the Monkey College, graduating with flying colors. Capuchins can live 35 to 40 years in captivity, so she is in the prime of her life.”

Just then Kasey jumped up on the bar and dove into a dish of cashews, then she launched herself over to the coffee table, where she paged through a copy of People magazine. Finding nothing of interest in the exploits of Lindsay Lohan, she returned to Ned’s shoulder, leaving us breathless. Suddenly, the air in the room seemed lighter, full of oxygen and joy. It was simply not possible to look at that funny little face without experiencing a feeling of pure happiness.

Still, there was much work to be done. That first day, Megan and an occupational therapist, Jill, showed us how to set up Kasey’s cage and position it in Ned’s room (a process that would continue to confound us for weeks). They also showed us how to prepare her chow (in Tupperware, shaken, not stirred) as well as her other seven meals each day, and, most important, how to talk to Kasey and ask her to do the things Ned needed her to do.

I was intrigued by Megan’s uncanny understanding of Kasey’s complex vocabulary; the monkey was really noisy. Every squawk, whistle, warble, and trill, every peep-peep and skee-kit was nuanced.

And she definitely had her preferences. “She has several polar fleece blankies she likes to snuggle with,” said Megan. “She also has her favorite toys”—a black pleather coin purse that Kasey zipped open and shut; a plastic bath book, Mimi’s Toes (about a monkey in a bathtub); and a little roller coaster unit with chubby beads (a miniature version of that toy in every pediatrician’s office).
Meanwhile Jill was outfitting Ned’s wheelchair with a treat dispenser so he could offer Kasey a dollop of peanut butter on his finger.

“The treats help train Kasey to come to you and do tasks,” Jill told Ned. “Everything should be followed by a peanut butter reward.”

“Okay…. It’s just…” Ned’s hand was pretty much immobile. He shook his head, discouraged.

“Relax. We’ll keep tweaking the position.”

Jill worked with Ned until he could bend his finger enough to grab some peanut butter.

“Excellent.” Jill squeezed his shoulder. “Over time, Ned, the exercise of giving her the peanut butter may help you gain mobility in this hand.”

I couldn’t help it; my mind leaped ahead to Kasey helping Ned regain full use of his left hand. Maybe his right hand, too. And then his legs, and then maybe someday, he’d…

“Let’s start with the basics,” said Megan. “Ned, ask Kasey to ‘come, sit.'”

“Kasey,” Ned said eagerly. “Come sit?”

She shot him a blasé look and didn’t budge—like a strikeout at a singles bar.

“Try it with peanut butter,” said Megan.

He scooped up a dollop. “Kasey, come sit?”

That did it. Kasey flashed to Ned’s lap and greedily licked off the peanut butter, but then she was back on Megan’s shoulder within seconds. Ned couldn’t mask his disappointment.

“That’s it?”

“She’ll come around,” Megan reassured him. “Time and patience. Meanwhile, learning the basics takes repetition.”

Ned nodded tightly, but I could sense his frustration. By the time he and Kasey had finished practicing their task, he was riding waves of nerve pain triggered by the commotion. Time to call it a day.

“Don’t worry about Kasey,” Megan said, preparing to leave. “She’ll be curious tonight, following everything that’s going on. She’ll probably watch a little TV with you. Kasey loves TV.”

That evening, as predicted, Kasey perched on her bedroom shelf, watching as we transferred Ned to his bed. She seemed particularly fascinated with the workings of the cranky old mechanical lift that took up a huge amount of real estate and looked like it came from the same medieval torture chamber as the halo. I always held my breath when I saw Ned suspended in the contraption; it looked ready to topple at any moment. Kasey seemed to have the same reaction.

I positioned Kasey’s cage so she could keep one eye on Ned and the other on the TV, then went to get the monkey chow Megan had prepared. Kasey pinwheeled with joy when she saw it coming.

“Wow,” Ned laughed. “Dinner and a show.”

This felt like a precious step forward. I turned out the light and whispered, “Good night, you two.”

Thrusting Ned and Kasey together—ready, set, bond!—was like trying to build a cathedral out of Popsicle sticks. Small steps forward were almost always followed by noisy stumbles back. It didn’t help that our newest family member was something of a diva. She screeched at the dogs and my teenagers, and squawked if I moved her cage just a little bit too far or too fast. What’s more, she required a regimented routine of feeding, manicuring, and cleaning that added yet more stress to our household. On the upside, Kasey provided Ned with constant visual stimulation. Even when she wasn’t doing much—playing with her toys, reading her book—he watched her with endless fascination. They were interested in each other; that much was clear. But after the first few months of working together, Kasey was still acting like Ned was nothing but a boulder she had to climb over to get her peanut butter.

“This is normal,” Megan told us. “It takes time to build the relationship.”

“How much time?” I was afraid to ask.

At least Kasey was expanding the repertoire of tasks she could perform for Ned. She could fetch the remote, and bring him a bottle of water, put a straw into it, and bring it to his mouth, Ned rewarding her with peanut butter each time.

But repertoire was one thing. Rapport was quite another—Kasey was often standoffish, aloof even. We were discouraged. Ned needed connection and engagement. Instead he would lie for hours staring at the “Welcome Home” sign that still hung on the fireplace.

Every so often, there were hopeful signs of friendship. Kasey would stay on his lap for an extra second before leaping back to her cage. One day she pounced on a big stuffed monkey Ned’s grandmother had given him, which perhaps Ned was getting “too friendly” with. Another day I watched in amazement as Kasey, who loved to scribble on any surface, dragged a pad of paper onto Ned’s lap, held a pencil in her hands and, using her feet to hold the paper securely in place, made some fine-looking hen scratches. When she had finished her first draft of Mimi’s Toes: The Sequel, she handed the pencil to Ned, in the monkey version of occupational therapy.

But the days were long, and despite all our efforts with Kasey and otherwise, Ned’s nerve pain wasn’t going away.

“There’s the constant, underlying, sucks to be you sort of pain,” he explained to me. “And then there’s the lightning bolt ripping through my entire body sort of pain. It’s like my tongue is on fire and my hands are stuck in an ice bucket.” On this particular day he was having the lightning bolt kind. We’d tried everything, in the hospital and at home. Medication, massage, hot packs, cold packs—nothing seemed to help. I was beside myself as I helplessly watched my son suffer.

“Mom,” he called out. “I’m on fire! Mom—please do something!”

I didn’t know what I could do, but in that moment I looked to Kasey like I’ve never looked at another creature before. What did she see? Hope? Desperation? Somehow that dear little monkey understood just what was needed. As soon as I took her out of her cage, she clambered up on Ned’s chair and wrapped her tail around his neck. With a deep, guttural “hoo-hoo” that was more like a whisper, she carefully positioned herself on Ned’s chest, right over his heart. Both of them were very, very still. And then—I don’t know—the anguish that had been so visible in Ned’s face, his contorted expression, suddenly disappeared. His pain was beginning to recede.

Thank you, God. Thank you, Kasey.

“It’s amazing, Mom,” Ned said to me later that evening. “Kasey comforts and relaxes me like no drug. Do you think she actually knows how I feel?”

I looked over at Kasey, nonchalantly zipping and unzipping her purse. “I don’t know—Kasey? What do you think?”

To which Kasey responded with a smug shrug and a “Skee kit.”

“Just doing my job.”

Copyright © “Kasey to the Rescue: The Remarkable Story of a Monkey and a Miracle” (Hyperion), by Ellen Rogers.


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