Christopher Clark pulls up a chair for his next act: A live performance of life with ALS

I walk past the remodeling contractors in the garage and step over building supplies as I make my way up the snowy wooden ramp at the Clarks’ Provo home for our morning interview (I later learn that 10 a.m. is the “crack of dawn” for an ALS patient).

I am warmly greeted by Lisa, who appeared on our Utah Valley Magazine cover in 2014. We smile, we hug, and she seats me in their cozy living room while she heads up their split-level to retrieve her husband. A few moments later, I hear Christopher’s friendly voice call down the stairs, “Jeanette, I’m on my way. I should make it down these six steps in about 15 minutes,” he jokes.

His characteristic charm and humor set the tone for our candid conversation about his theater career, his portrayal of the apostle Paul, and his diagnosis nearly a year ago. Before we launch into our official Q&A, he shows me 100 paper cranes sitting wheelchair-height beside him.

“A friend brought these to me from Japan, and apparently 1,000 paper cranes means good luck,” Christopher says as he holds some of the cranes with his better hand. “But he could only get 100 paper cranes, so does that mean I only have 10 percent of hope? I guess any hope is better than no hope, right?”

I quickly learn what Instagram has already told me — Christopher (also known as Chris and Topher) is comfortable talking about the discomfort of Lou Gehrig’s disease and its inevitable outcome. And while that’s true, he mostly wants to talk about now.

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IN KIND

Christopher and Lisa have been the grateful recipients of many creative kindnesses. During our Utah Valley Magazine interview, a neighbor knocked on the door with a birthday cake for the Clarks’ teenage son. 

“This amazing friend told us she wanted to take care of our birthday cakes for the year,” Lisa says. 

This sugary do-gooder brought in a plate of cupcakes and a “Taco Belle” cake, in the shape of Belle from “Beauty and the Beast” with sugary “tacos” in her dress. A huge hit for the quirky Clarks!

The Clarks also told of a friend who saves them a handicapped parking spot at church each Sunday. Another woman reserves them a handicapped pew in the chapel. 

“This past year has been full of kindnesses,” Chris says. “Whatever people are good at, they’ve been helping us with that one thing. If I could turn back time when I was more able, I would want to do more for others.” 

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Because now is ovation-worthy.

Chris is in his 15th year as a theater professor at UVU. He’s directing “Betty Blue Eyes” at Hale Center Theater Orem. He’s producing “Joseph and the Amazing Technicolor Dreamcoat” for Sundance Summer Theater. He has five ambitious children (ages 9 to 18) all living at home. His comedian-actress wife just went viral with her second “Chatbooks” video. And he is taking his 12th annual trip to England with students this summer — “God willing,” he adds.

Christopher went to BYU on a theater scholarship in the 1990s. Although he always had a passion for plays — he once turned down going to “Bill & Ted’s Excellent Adventure” because he was in the middle of reading Shakespeare’s “The Two Gentlemen of Verona” — Christopher wasn’t sure drama was the right storyline for a man desiring a family (he grew up with eight siblings).

He scheduled an appointment with a BYU career counselor and took an exhaustive test to determine his aptitude. On his return visit, the counselor seemed nervous.

“Well, I have your results,” she said as she shuffled the papers. “It looks like your No. 1 job suitability is ‘circus performer.’”

What? Christopher wondered why that was even in the database. His No. 2 option was teacher, while his No. 3 was lawyer.

“I was having back problems, so I didn’t go into the circus,” he laughs. “But what I do now on a daily basis is circus performing. I keep balls in the air. I walk a tightrope. And I like lions.”

Mission possible and a hellish role

Chris graduated from Provo High School, where he was voted “Most Preferred,” he was chosen as Prom King, he was elected student body vice president, and he played the lead in “The King and I.”

“I had friends who were assertive, smart and on the honor society, and I had friends who were hellions and got me into trouble — and I loved both groups equally,” Christopher says.

Then Christopher spent one of his two mission winters wearing an “Elder Clark” badge above the Arctic Circle in Finland.

“The days were dark, and I learned to find other sources of light,” he says. “It became about finding energy, finding love — all these things we normally get from the sun. I turned to service, to humor, to positivity. I learned to make work fun.”

About three months after his mission, Chris felt a strong impression to audition for a play put on by the BYU English Department. This depiction of the Old Testament wouldn’t be part of fulfilling the requirements of his theater scholarship, but he and his best friend showed up for the auditions and Lisa was sitting in front of them. Chris and Lisa both got cast — he played Satan and she landed the role of a chicken on Noah’s Ark.

“It was my breakthrough role,” Lisa says.

Their first official date was at a Shawn Colvin Concert. They held hands. They ate Italian food. And yada, yada, yada, they will celebrate their 22nd wedding anniversary on June 3.

In sickness and in health

Chris and Lisa’s relationship is admired (and even coveted) by those who know them best.

“I have always felt that I relied on Lisa to keep me sane and to center me when I was too busy or too stressed,” Chris says.

“In this past year, I’ve learned to rely on her physically as well, in a similar way to how a toddler relies on his mom. She helps me in and out of the shower. She gets me dressed. It reminds me why a marriage partner needs to be a best friend because it takes more than romance. But we’re very romantic — we make out all the time!”

Christopher’s humor helps mask his natural fears and anxieties surrounding the inevitable outcome of ALS, with an average life expectancy of two to five years from time of diagnosis.

“I can’t imagine going through this with anyone but Lisa,” he says. “And as time goes on, my need for her will be more pronounced.”

Ice-cold reaction

But let’s rewind the script and go to the scene of the ice bucket challenge. Chris and Lisa stayed completely dry during that national craze, and in fact, they made fun of it.

“It felt like chain mail to us!” Chris says. “And now I’m probably being cursed by not doing it — but we’re benefiting from the money that was raised.”

And with that foreshadowing, let’s go to the scene where Chris had a doctor’s visit in early 2016. He’d been having “weird stuff” going on with his body, and he thought his back needed a tuneup 15 years after having back surgery. A neurologist in Draper said at the end of the appointment, “I’m concerned about Lou Gehrig’s.”

Afterwards, Chris pulled up Wikipedia while on the elevator headed to his car. The first thing he saw was the death rate. Then he saw what the disease did to people. But not wanting to overdramatize, he reminded himself that it wasn’t a diagnosis. Just a possibility.

Life continued while the Clarks waited for results. Chris traveled to Vancouver and had a hard time sleeping in his hotel room, anxious about his health.

“I turned on the TV to find the dumbest thing possible,” he says. “And there was ‘The Love Boat,’ usually full of stupidity and hijinks. In this episode, a passenger goes to see a doctor because he keeps dropping things. The doc examines him for 30 seconds and says, ‘You have Lou Gehrig’s disease.’ There was no getting away from this! God has a sense of humor.”

Between Chris’ trip to Vancouver and Lisa’s next trip for “Random Acts,” the couple shared their milestone moment in their quiet home.

“He looked at me and I looked at him, and we started crying. We both knew,” Lisa says. “The spirit was telling us to be ready. It was a tender mercy. Strangely, I had been praying that it would be cancer or MS or even Lyme disease. Anything but ALS. But in that moment, we knew.”

Lisa debated whether she should really go to San Francisco. But Chris replied, “What are we going to do? Stay in bed and cry?”

Chris went alone to an appointment at Utah Valley Hospital where they hooked him to a machine and shocked nerves individually to see how they would  respond.

“It’s a lot of fun!” he laughs.

The doctor wrote “DX ALS” on a prescription paper to be taken to University of Utah. Not expecting his diagnosis to come that day, Christopher dealt with it by eating a giant chocolate muffin, crawling into bed, and watching a John Wayne movie. Then he attended a gay wedding.

“People wondered later why I went to a wedding the night of diagnosis, but I knew it would be a party, and it woke me back up,” he says.

A couple weeks later, the Clarks had processed their new reality and they delivered the news to their families on Easter Sunday — calmly and with a bit of humor.

“All of their responses were unique and fitting to their personalities,” Chris says. “One thing I’ve learned is not to judge people’s reactions. Just because someone stays stoic on the outside doesn’t mean they aren’t crumbling on the inside.”

Wolverine pride

Although Chris and Lisa maintain their signature humor and full-to-the-plot schedules, their day-to-day approach is more thoughtful.

“I still do most of the same things I did a year ago, but I have to think about how I am going to get in the building, or whether I can truly have two meetings back to back,” he says. “Part of ALS is needing to sleep more, so I schedule in power naps. My goal is to stay productive. The more productive I am, the better I feel physically.”

Chris began at UVU 15 years ago as an adjunct professor teaching English and theater. In 2005, he took a full-time job in the theater department and later became the department chair, a position he stepped down from in December to focus fully on teaching and directing.

A thing for Paul

With his fetish for strong characters and meaningful storylines, Chris is partial to the apostle Paul. In fact, he finds it difficult to give a talk, teach a lesson or bear his testimony without mentioning the prolific New Testament missionary.

“My main exposure to Paul had been the maps in the back of the Bible,” Chris says. Then he studied Paul and always noticed when he was mentioned in General Conference, which was preparation for Chris as he auditioned four times to play him in the LDS Church’s New Testament video series.

“After about 18 months, I got a letter from the First Presidency asking me to play Paul,” he says.

This role took him to Italy and to Goshen. Then, three months ago, he was asked to play Paul again for still photographs that will hang in the remodeled MTC. The idea was to shoot as the sun was coming up, with everyone and everything in place as the rays began to race. Christopher’s ALS “rhythm” makes early mornings difficult, but a team got him dressed in robes, with makeup on, and in place before dawn.

“They wanted me to kneel, and my body can’t really do that,” Chris says. “But as the sun was starting to come up, I prayed and asked for help. I felt as if I was picked up. I was in the kneeling position with confidence and strength as the sun came out. Cameras were clicking everywhere, and after 10 minutes, I started to sag. Everyone was in tears and they said it was perfect.”

The Christmas story

On Christmas Sunday 2016, the Clarks woke up to piles of snow on their sidewalk ramp. The wheelchair wasn’t going to traverse the winter path.

With a one-hour church at 9 a.m., Lisa told Chris to stay at home and enjoy keeping his rule of wearing PJs all day on Christmas.

When Lisa and the children arrived at church sans Chris, a group of ward members got up, went to the Clarks home and carried Chris out to a truck — still in his Christmas onesie.

“Both Christmas and New Year’s were pretty hard days for me, and having our ward do that for us on Christmas morning is the reason we don’t want to build a new house — we’re retrofitting this one and staying here,” Lisa says.

Chris posted a picture of himself sitting in his wheelchair at church, with a suitcoat over his Christmas pajamas and this caption: “He hoped the people saw him in church, because he was a cripple, and it might be pleasant to remember, upon Christmas Day, who made lame beggars walk, and blind men see. — Charles Dickens.”

Days of their lives

The Clarks say many weeks are “business as usual,” while others are teary.

“Some days I have to say goodbye to something, such as being able to turn the knob on that door,” he points.

One of the hardest goodbyes was to yardwork.

“I love mowing the lawn,” Chris says. “Last summer, the mower was going too fast for me and it took me three hours to mow the small front lawn. I burst into tears and realized I would never do that again. But I have two strong sons who can mow that lawn.”

The hardest “goodbye” for Lisa was when Chris stopped playing the piano.

“I wanted to get him a baby grand, and in our addition to the house, I wanted him to be able to wheel up and play,” she says. “I’m still not over that.”

He studied to be a concert pianist with legendary David Glen Hatch until age 16, and Chris says giving up the piano was harder than giving up walking.

“I used to play all the time — even just for therapy,” he says. “I would always sit down and play, and it felt really good. But it doesn’t pain me to go by the piano anymore. It doesn’t kill me to watch my sons mow the lawn anymore.”

Lisa says, “He’s healthy that way.”

Although the hardest faces to tell about the diagnosis were their children, Christopher and Lisa say the kids haven’t taken it as hard as they expected.

“They don’t bat an eye about putting on my socks or my jacket,” Chris says. “They get me up and down the stairs, and we’re all excited about the remodel so I won’t need as much help getting around. There haven’t been a lot of tears and anxiety, although that will come as my disease progresses. For now, we are living our lives.”

And for that, the Clarks deserve a standing ovation.

Learn more about Christopher Clark’s “off-the-shelf” directing here.