- Associated Press - Monday, December 8, 2014

LITTLE ROCK, Ark. (AP) - They met at Barnes & Noble on a blind date arranged by a friend.

He took one look at her plaid Converse sneakers and knew.

She watched a teasing grin spread across his face and knew.

Over the next few hours, they realized they shared the same hobbies and friends. They liked the same sports. How had they never crossed paths?

Eleven months later, he proposed.

Eleven months after that, Kip Jackson married Robin Whitten.

Three years later, they received a devastating diagnosis. In just a matter of months, Kip and Robin saw their lives, their plans, their dreams - everything - upended.

He can no longer move or speak. But she doesn’t need gestures or words to know what he needs. Even before Kip traded his voice for a tracheostomy tube, he and Robin could complete each other’s thoughts and sentences.

Because when you love somebody, for better or for worse, you just know.

“Every day is a challenge. But every day is such a blessing, too,” Robin told the Arkansas Democrat-Gazette (https://bit.ly/1HZoMX4 ) at the couple’s Sherwood home.

Using a machine that “speaks” for him, Kip added: “Life doesn’t end at diagnosis.”

“Kip is the one who keeps me calm,” Robin continued. “I’ll get upset, like when the suction machine isn’t working like it’s supposed to. He’ll just wink, and whenever he winks at me, I know we’re gonna be OK.”

In November 2011, Kip’s right leg started giving out on him. After a series of falls, one of which resulted in a concussion, Kip was examined and tested by neurologists.

The doctors hinted at ALS, but Kip and Robin were skeptical.

Amyotrophic lateral sclerosis - better known as Lou Gehrig’s disease - involves the progressive degeneration of motor neurons, which are responsible for sending messages from the brain to muscles. This breakdown in communication means that muscles no longer receive the impulses that prompt movement. Unused, those muscles then begin to atrophy.

Early symptoms include increasing muscle weakness in the arms and legs. The disease also affects the ability to speak, swallow and breathe.

About 5,600 people in the United States are diagnosed each year with ALS, according to the ALS Association. It’s believed, however, that as many as 30,000 people have the disease at any given time.

Kip knew more than most about ALS. A friend at work had recently been diagnosed. His symptoms were similar, sure. But what were the odds of two people who shared a cubicle getting the same diagnosis within a year?

Then, Kip’s leg left stopped working, too. He had to rely on leg braces and a walker to get around.

“I really feel strongly that it’s ALS,” the doctor told Kip and Robin in July 2012.

Still, Kip remained dubious. He figured he had multiple sclerosis. A tumor, maybe. Or Lyme disease.

Kip and Robin then Googled feverishly, hoping to find a less scary disease. Too many times, however, a search of Kip’s symptoms yielded the same unwanted results: ALS websites.

In October 2012, the couple nervously visited a hospital in Houston.

After several days of tests and meetings with doctors, Kip called his older sister, Julie Nichols.

“It’s ALS,” he told her before breaking down.

When she met Kip in early 2006, Robin had never dated anyone seriously. Her focus was on getting a master’s degree in social work. Kip worked in information technology - first for the Arkansas Democrat-Gazette and then Arkansas Children’s Hospital. Like Robin, he also hadn’t dated much.

Both Kip and Robin were in their 30s. No kids. No idea that within a year they would be engaged.

But on Dec. 1, 2007, Kip’s sister insisted on taking Robin on a Christmas-shopping excursion, despite Robin’s protestations that she wasn’t big on shopping.

When they returned, Kip had set out his grandmother’s china. Candles flickered. Norah Jones’ voice wafted softly from the stereo.

“What are you doing?” Robin asked, taking note of the Italian takeout from Zaffino’s.

Robin took a bit to process the scene unfolding in front of her. Candles. Music. Kip proposing.

Of course she said, “yes.”

They married on Nov. 8, 2008. A week later, they left on a Caribbean honeymoon cruise.

Kip and Robin celebrated several milestones over the next three years.

Kip began working in data engineering at Windstream. Robin earned her master’s degree and became a social worker at Pathfinder Inc.

Equally blessed with a zany sense of humor, Kip and Robin delighted in using their Facebook pages to reveal inside jokes, photos of themselves in silly poses or costumes, and videos designed to entertain their friends and family.

Right after the wedding, Robin made sure to post a video of Kip singing and dancing to Journey’s “Don’t Stop Believin’” at their wedding reception.

Robin’s sister was the first to respond with a comment: “THAT MADE MY DAY!!!!!! HILARIOUS!!!!!!”

Robin complained good-naturedly about Kip’s obsession with football, while he hammed it up in photos with ridiculous expressions that never ceased to amuse their friends.

In January 2011, Kip offered a humorous account of a typical night at home for the couple:

“First attempt at Wii basketball….

“Kip: Watch out for the fan, sweetie…

“Robin: What about the fans… (pause) in the game????”

“CRASH!!! Light bulb glass flies out everywhere…

“Kip: No, Robin (he points up at the ceiling fan). THE FAN!!!!”

The jokes about Robin’s mishaps with electronics continued on Valentine’s Day 2011.

“Happy V-day Boo! Love you!” Robin wrote.

Kip’s reply: “Love you baby, I am SOOO lucky to have you … and SOOOO lucky you don’t treat me like your phone….”

Kip and Robin allowed themselves a brief period to mourn Kip’s diagnosis and what it would mean for them.

Then they set out to prove that ALS doesn’t have to be a death sentence. ALS would be what they made of it.

Kip’s sunny optimism returned. This disease would be part of his life, yes, but it wouldn’t define it.

The average prognosis is three to five years to live. But 10 percent of ALS patients live much longer. Kip wanted to join their ranks, whatever it took. And Robin - his partner in mischief and marriage - was determined to make that happen.

The couple created a shared Facebook page, “Kip’s Krusaders: Fighting with Faith for a Cure,” to keep friends and family updated on Kip’s condition.

As usual, their posts have reflected the sense of humor that carried them through each day.

On Nov. 6, 2012, Kip wrote: “The power wheelchair is supposed to ship on November 15th… I’ve already picked out the shag carpet for the armrests and the seat. Another question remains, however… should I go chrome or bust out the spinners for the wheels??? Thoughts???”

Friends suggested a sidecar for Robin.

When Robin flung herself into decorating their home for the holidays, Kip kept Facebook friends apprised of her progress.

“My wife is decorating for Christmas. To do this, she is rearranging furniture - with me in it. I have been moved across the room, moved next to the fireplace, she found out that I fit nicely against the window, and if I stretch out my power lift recliner all the way - my body makes a great table to set stuff on. The funny part is that she has now moved me back to my original spot.”

Kip’s disease progressed rapidly. The couple learned that they would have to keep redefining “normal.”

One week, “normal” might mean that Kip could no longer walk. Another, it might mean that he’d lost the use of his hands, or that he couldn’t swallow.

On Christmas Eve 2012, Kip was admitted to the hospital with blood clots in his lungs. Christmas Day, Robin posted a Facebook photo of herself and Kip in the hospital room.

“My best Christmas present ever!” she wrote. “Merry Christmas from St. Vincent’s.”

In March 2013, Kip retired from his job at Windstream. His cake read: “Enjoy your PS3 and 80s music.”

But Kip was busy. By this time he was deeply involved in the Walk to Defeat ALS. He gave speeches. Participated in the walk. Corresponded with others stricken with the disease.

That June, he wrote lovingly of his relationship with Robin: “No words are big enough to express my never ending love for this strong, courageous, loving woman. … I do not want to live without her. To me, my purpose for life would cease to exist if I could not share everyday with her.”

In August, Robin posted once again the video of Kip singing “Don’t Stop Believin’” at their wedding reception.

She wrote: “As Kip is preparing for surgery this week it made me think about how much our lives have changed over the few years we have known each other. And, of course, it reminded me of how very blessed I am to have met and married such an amazing man. Here is a little snippet of our wedding day to make you smile. The words he sang that day, five years ago, are the same ones he sings in his heart today. I LOVE YOU KIP JACKSON!”

By October 2013, Kip had lost the use of his arms and hands. His voice grew weaker each day. Ever the techie, he knew exactly what he needed: An eye-gaze machine. Such equipment uses a person’s eye movements to type or select commands.

Kip’s Tobii machine allowed him to continue communicating with the outside world. He could email, post on Facebook, change the television channel and operate the DVD player.

“HOLY OBI-WAN KENOBI!,” Kip wrote on Oct. 2, 2013. “I feel like a Jedi-Knight moving mouse cursors and windows, typing words, and selecting objects using only my eyes on my new eye-gaze machine… Whenever I get frustrated with this thing, I swear I hear Ben say, ‘Use the force, Kip….’”

Kip knew ALS can take only so much from a person. The disease rarely affects the eyes and their ability to move. So, really, there was only one last part of him the disease could steal.

His voice.

On Nov. 6, 2013, he wrote: “I have a message for you, ALS: I am the most stubborn person that you will EVER come across and I will fight you every single step of the way. You have taken away my ability to move and breathe but you cannot touch my soul or my will to live. I absolutely refuse to go quietly.”

“Kip always said that he wants people to see the light in him, to see God in him, and I really think they do,” Robin, 40, said, smiling at Kip.

“The amazing thing about Kip? He can’t move a thing on his body. He can’t speak. He can’t breathe on his own. But he’s still so funny — so funny and charming. ALS isn’t an immediate death sentence. Your quality of life can still be fulfilling with this disease.”

The couple just celebrated their sixth anniversary. Kip turned 43 last month.

Until earlier this year, Kip relied on a noninvasive ventilatory assist machine, known as a BiPAP, to help him breathe. The apparatus requires only a mask to push air into the lungs. But as ALS progresses, a BiPAP becomes less effective.

By February 2014, Kip could no longer cough or clear secretions from his throat and lungs. Robin and other family members spent numerous sleepless nights suctioning out these secretions. Kip decided it was time to get a tracheostomy. He did so in April.

The surgical procedure involves creating an opening through the neck into the trachea, or windpipe. A tube is then placed through the opening, providing both an airway and an easier means for removing lung secretions.

Many ALS patients see a trach tube as the beginning of the end. For Kip and Robin, it represented a more flexible lifestyle.

“We always knew it was coming, that it was down the road,” Robin said matter-of-factly. “Most patients don’t go with the trach. They don’t have the will to live with it. But part of not giving up was getting this trach.

“Before, we were up all night, 18 hours of respiratory therapy. It was exhausting for him. It took a toll on me. Now it takes just 10 minutes to get secretions up. This was a good decision.”

The most difficult element, Robin said, was knowing that she would never hear Kip’s voice again.

“I realized after the first few days how lonely it is to have no one to talk back to you. Now, I’ve gotten used to it. But to never hear his voice again, to hear him say something smart-aleck? That was tough.”

Then, from the other side of the couch: “This is my mellow voice.”

It was Kip, using his Tobii to communicate. “I’ve got different voices now.”

Those include the soothing “mellow” male voice; one with a country twang; a woman with a British accent; and so on. One day, Robin was alarmed to hear what sounded like a mobster in her living room. But it was Kip, trying out a new voice.

To speak, Kip uses his eyes to select letters, words or phrases on the screen in front of him. Then he shifts his gaze to the “speak” button. He also communicates by raising his eyebrows, which means “yes.”

Kip spends his days at home with a caregiver who shares his and Robin’s sense of humor. When he and Amy Kay Wilson aren’t sharing - or making - videos to post on Facebook, Kip reads voraciously or works on his own book.

Using his mellow voice, Kip explained: “The world needs more bad fiction. I’m just the person to do it.”

His sister visits one evening a week, and Robin’s sisters fill in as needed, especially on weekends. Having a team allows the couple to live as normally as possible, Robin said.

“Our faith in God is a big part of it, too. Everybody’s got some sort of burden going on in life. This just happens to be ours.

“But we are a ‘we,’” she stressed. “This is our card we’ve been dealt. We’re strong enough to handle it. We accepted our fate. Instead of being angry, we just take it day by day, and are so grateful.”

The mellow voice speaks again: “Amen.”


Information from: Arkansas Democrat-Gazette, https://www.arkansasonline.com

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