Landscaping, fixing up home brings quadriplegic's family together in crisis

Henry and Jane celebrate the birth of their third child, Mikala, now 13

By Kaye Ross

When Jane and Henry Evans were married May 22, 1987, the priest gave a homily that surprised some of the guests. This day, he said, is not what marriage really is. Marriage is not the perfect dress, the fabulous party or the well-planned togetherness that proceeds without a hitch. It is actually illness and struggle, dirty diapers, constant challenges, occasional arguments and sadness. Some of the guests thought it was rude for the priest to point this out on a couple’s happiest day.

Today, four years after her husband suffered a massive stroke that left him a mute quadriplegic, Jane remembers that homily as apt preparation for what lay ahead.

“Is it easy? Did I choose for this to happen?” she said. “No, but you do what you have to do.”

Henry said that Jane’s optimism is the reason he can look on life somewhat happily despite his disability. It is evident that Jane is a full-throttle person, energetic, funny and quick. But she is emphatic that she is no saint, and said she still must take a drive by herself now and then to cry on Skyline Drive.

Henry and Jane both grew up in St. Louis, Mo., and went to Catholic high schools a mile apart. They were born in the same hospital. They met in high school and were married in their 20s. Pictures from their early years together show a strapping, 6-foot-4-inch Henry beaming with his petite, raven-haired wife, the daughter of a Peruvian émigré family.

Two children soon came, Stephen, now 17, whom his mother describes as “the comedian in the family” and Nicholas, 16, “the deep thinker.” Days were filled with fishing trips, camping and near-constant activity. Mikala, now 13, was born in 1993.

One of the family trips gave rise to the Evanses’ home-improvement projects that Henry said has been a godsend for keeping the family together after his stroke.

The kids loved dinosaurs. “Whenever we went anywhere we had to take a suitcase full of dinosaurs,” Jane said. On a camping trip to Dinosaur National Monument in Colorado, Jane noticed an advertisement for an archeological site in Kemmerer, Wyo. The public was invited to dig there. If families turned up no real archeological jewels, they could take the rocks with fossils home with them.

“Henry said, ‘That’s 100 miles out of our way,’” Jane said. “I said, ‘We’re going.’”

The Evanses actually made two trips to the quarry. Michael, now 10, had not been born the year of the first trip. When he grew old enough to understand about the fossils, he begged to go there, too.

Henry, the home fix-up king, decided to mount the stones with their fossils on the wall around the fireplace. Large fossilized fish now swim over the fireplace past their smaller cousins and a few crinoids.

The family had not been in their Los Altos Hills home long before Henry had his stroke in 2002. A birth defect caused the lining of one artery to dislodge and block blood flow to the brainstem. Henry has full feeling but cannot yet move anything but his head, his eyes and a finger.

The extremely active dad who had been so involved in Scouts and school activities, who tied his own flies and had a project going constantly had suddenly left them.

In those early days especially, Henry agonized under the pressure of going from being the in-charge head of the family to someone as dependent as a baby on even the youngest children. Overnight he had changed from being the CFO of Satmetrix.com, with a large family and a loving marriage, to being helpless.

Jane said Henry lay in bed and cried for two years. Jane told him that he had every right to spend the rest of his life crying and no one would blame him, but did he really want to spend the rest of his life that way?

Henry’s brother, a doctor in Montana, told him that the odds of having had the type of stroke that struck him were so low as to be comparable to winning the lottery.

“He said, ‘Why couldn’t I have won the lottery?’” Jane recalled. “And I said, ‘You did. You have won a ticket to heaven.’”

Jane said she has relied on her faith to keep her going, but there is also a deep well of strength born from experience that she can draw from. Jane lost her mother to breast cancer when she was 15. The cancer was caught very late, so her mother had only a year to live once the cancer was diagnosed. As she slipped toward a coma, Jane’s mother began thinking Jane was her mother.

“I made a deal with God,” Jane said. If he would give her time with her mother before she died, Jane would believe.

On her mother’s last day, her father drove Jane to the hospital. As he parked the car, Jane ran upstairs to find her mother dead, but still warm. Jane held her for a long time.

“Don’t you see the sign that’s right in front of you?” her father said. “It is time with the family that is the most important.”

That is one reason why Jane was able to say to Henry shortly after his stroke, “This is a piece of cake. You can do it. This is the lowest you’ll ever be. From now on all you can do is get better.”

Henry’s emotions began stabilizing when his doctor prescribed Prozac. It wasn’t for depression, but for regulation. The stroke had so jarred his emotions that he was crying one minute and laughing the next.

Jane said Henry began to take some inspiration from Christopher Reeve, who lost his ability to move in a spinal chord accident, and Stephen Hawking, the theoretical physicist who was rendered quadriplegic by amyotrophic lateral sclerosis.

When Reeve died on Henry’s birthday, Oct. 10, 2004, Jane said she told Henry, “That is a sign to get up and get your life going again.”

And he did. Henry became adept at spelling out words on his PC by moving his head. A laser tracking device on the monitor reads the movement of a dot on his glasses - allowing Henry to communicate with his family and the outside world.

This also became Henry’s vehicle for recapturing some of the head-of-the-family authority he had lost when he became mute. Henry wrote in his blog:

What really brought it all together was my side yard. I had been landscaping it right before my stroke. When I got home, I wouldn’t give up on it.

I typed out directions for my kids and my dad. To my surprise, they didn’t read them carefully, when they read them at all. It was a good lesson. People don’t like to be told what to do, and writing is a terrible medium for urgency.

I learned another painful truth - what I used to do in a few minutes now could take weeks, if it got done at all. First, I had to find someone actually interested in doing it. Then, I had to get the parts. Then, I had to communicate how to do it.

Finally, I had to watch it being done, because very few people follow directions. I soon learned to take what I could get and be happy. Not easy for a perfectionist, but the other choice was to do nothing.

The side yard was just the beginning. Soon, Henry learned how to “draw” on PowerPoint with his head. He plotted out the look of the backyard: A circle of grass occupied the center, with raised beds on either side for flowers and vegetables. A sprinkler system was to be installed in the center, and Henry’s drawing showed how to lay the pipes to the water source. Around it all was to be a tall fence, with a gate off the driveway.

“Dad never runs out of ideas,” Michael said.

This past summer, longtime friends of the Evanses, Barbara and Don Tate of New London, Wis., spent several weeks at the house, helping with the landscaping and other work Henry had set out for them. Before they came, Henry wrote a 25-point list of chores for them to accomplish. With characteristic humor, Henry interspersed the command “Drink beer” among the more difficult jobs.

As their visit neared its end, Barbara said, “This is the most inspiring vacation I’ll ever take.”

By fall, zinnias framed one side of the house, and a mass of tomato plants, artichokes and flowers continued to thrive despite some poaching by Amber, the Golden Labrador Retriever puppy.

It seems like a small touch of normalcy for a family so beset by extraordinary challenges, but it has helped. Jane and Henry thanked everyone who has offered them help at even the worst times. That aid has allowed them to maintain the family on a disability income that is half what Henry used to make at Satmetrix and has kept them from drowning under the $50,000 to $70,000 in unreimbursed medical bills they have accumulated.

Before Henry had his stroke, he and a neighbor thought of covering a common hillside with grapes.

Henry e-mailed nearby Thomas Fogarty Winery to see if managers there might be interested in planting the grapes and harvesting some for their use. A vintner came to the house, but said that the hillside was too small and steep to be practical for Fogarty’s operations.

Weeks later, the vintner returned. The winery owners had decided that Henry should have at least part of his dream. The man planted and staked two rows of grapes at the far end of the backyard just before the hill slopes down into the woods.

The Evanses could find no better metaphor for their step-by-step struggle toward regaining the life they once had. Everything, it seems, grows very slowly.

Jane noted that even with Henry’s disability, there is no strife in the family, no marital discord, no horrible consequences playing out in the children’s lives. It is what it is, yes, but there is a lot to be thankful for, Jane said.

“I’m not saying our life is easy,” she said, “but we have peace.”

Read Henry’s blog at http://hevans-hevans.blogspot.com or e-mail him at 0524@sbcglobal.net.