The Evans family, minus the two teenage boys, strikes a pose in front of the small vineyard in their backyard. From left, Mikala holds the new puppy, Henry beams and Jane and Michael join in.
The Evans home in Los Altos Hills is its own whirlwind. Mother and wife Jane is trying to finish a sentence while 12-year-old Mikala and 10-year-old Michael shout at her, pull on her arm and otherwise compete for her attention. The new Golden Labrador Retriever puppy jumps up and down whatever set of legs happens to come nearest. Sunburned Midwestern friends of the Evanses interrupt their backyard landscaping to wave hello. Turn a corner, and there are two more dogs. In the garage are a work-in-progress jalopy that one of the teenage sons is fixing up, and a chinchilla in a cage. Jane apologizes that Nicholas, 16, and Stephen, 17, aren't home. She begs visitors not to look at the mess in the house, because, try as she might, she's just barely keeping up.
"Welcome to our chaos," she said.
This is the common success the Evanses have been working toward for more than four years - the comfortable uproar of a family of six. It happened by inches. Doctors and nurses helped, friends and St. Nicholas Church gave support but mostly the family had to do it themselves, struggling to make connections when none seemed possible, creating hope for each other when patience ran out. The apparent fullness of the Evanses' life today is all the more dear for their having come so close to losing it all.
Before it happened, father and husband Henry said:
Things finally seemed to be settling down. I had a decent job that I actually liked, my kids were doing pretty well in school, and my marriage was good. We had just stretched to buy a house; no mean feat in the Bay Area when you have one breadwinner and four kids. I had just had a complete physical and the doctor said I was in "excellent shape." I coached my boys in football and baseball and was very active in the Scouts and school. All in all, your basic American Dream. I was 40, and it felt like life was just beginning.
Henry was a 6-foot-4-inch, energetic CFO at Satmetrix.com in Foster City. He had a bachelor's degree from Notre Dame University and a master's degree in business administration from Stanford. About five years before he got sick, he weighed 250 pounds. Henry and his brother went on an arduous hike and "barely made it," he said. So Henry started jogging and dieting and lost 50 pounds in six months.
"It transformed my life," he said. "I had more energy, etc., on very little sleep." The younger kids say that their father was a constant motion machine - living on a few hours of sleep at night, he'd come home from work, start on some projects and keep going and going.
Henry began getting headaches. He was struck by two very bad headaches in the two weeks before it happened, the kind that forced him to lie down. He thought it was because he was tired or had skipped lunch. Then on Aug. 29, 2002:
I felt bad when I woke up, but insisted on taking the kids to school on the way to work. As I drove, my speech slurred and I got tunnel vision. I remember just focusing on the center line and the car ahead. After I dropped the kids off, I managed to drive back up the 6 miles of curvy road to our home.
My wife says I stumbled down the hall, using the walls for support. I said I just wanted to hold Jane and fall asleep. She insisted on calling my doctor. It would not be the last time she would save my life.
My doctor took one look at me and said, "Take him to the ER." He thought I had meningitis. I barely remember anything else. My wife says I tried to drink water but could not swallow. She says as I lay in the ER, my right arm went limp, and I asked what was going on.
Right before I lapsed into a coma, I said, "I'm so scared."
The inner lining of an artery in Henry's brain had torn loose and blocked the blood flow, keeping oxygen from getting to his brain stem. It is called a basilar artery dissection and is extremely rare, the result of a birth defect.
When he came to, Henry had a feeding tube up his nose and could not breathe on his own. His mouth was frozen shut. His brain seemed fine, except for some short-term memory loss, and he had feeling.
My dad explained that I had no motor control, and I got it - I was trapped in my own body.
The only thing Henry could move were his eyes.
Jane noticed this, and Henry's brother Pete, an engineer, devised a way to capitalize on this tiny hope based on something he had seen on the Internet. Pete created a large, square acrylic-glass board and printed out the letters of the alphabet around the perimeter. When the board was placed between Henry and his "listener," Henry could spell out words letter-by-letter by looking at a letter, then blinking twice for "yes, that's the letter I want" and blinking once for "no." The Evans family still uses the board as a communication tool.
After 22 days in intensive care, Henry stabilized. He began therapy. But even while Henry was being urged on in therapy, doctors were telling Jane that Henry would never move again.
The best thing she could do, they told her, would be to put Henry on antidepressants and place him in an institution. Jane stomped out of the room.
Henry says today that the entire story of his family is Jane's. "My wife keeps me positive," he said. In Henry's four months in the hospital, he got other help to keep his sense of humor.
It was not long before my six-year-old taught me how to wink. He was very persistent, and I told him I did it to get him out of my face.
Winking may not sound like much, but it was huge. To this day I wink when I need a scratch, and to indicate the end of a word on my board.
On Henry's birthday, Oct. 10, he moved his left index finger. It was to be the beginning of a partial release from his body's lockdown.
My speech therapist immediately recognized the significance of my finger moving and began to train me to click a mouse. After I learned to click a mouse, the speech therapist hooked me up to a special computer. By now I had a little control over my neck. They put a reflective dot on my glasses and put a laser device on the computer. It reflected off of my dot, so that my head movement moved the mouse.
The computer had an on-screen keyboard, so I could point at a letter and then click. In this way I could slowly spell out words. I still do it that way. I just need someone to set me up and then stay close to make constant adjustments.
After she got me set up, the speech therapist asked me what I had to say. She was really trying to see if I was coherent.
I decided to speak German. When she saw it, she pulled Jane aside and told her I was addled. My wife figured I was up to something and asked to see it. She recognized German, and said, "He is fine." The speech therapist almost killed me. I had a good laugh. Eventually some old friends hooked me up so I could e-mail and surf the Web. And write down my thoughts.
That is how Henry is speaking now - through the blog he began writing about his experience and e-mailing thoughts and answers to questions. It is agonizingly slow, but it has meant that a man who could not utter a sound for a year after he left the hospital now can talk, think and plan on screen and even order his children around.
Eventually, the Evanses discovered that they could get the same "eye tracker" effect with a specially equipped but conventional PC instead of the $13,000 computer the hospital had recommended. Henry's PC is set up in the kitchen, and he looks out over the backyard and part of his 1 1ÃƒÂ¢Ã‚ÂÃ¢â‚¬Å¾4 acres.
"This is my world," he wrote to a visitor.
Henry said that his mind still works at the same speed it always did, even though it takes him so long to communicate even a quarter of what he is thinking. It is not the only frustration he has to deal with.
"My body changed in a few hours, but my mind still has not fully accepted it," Henry said. "I still can move normally in my dreams, for example.
"A really bizarre thing happens when an itch wakes me up. I start out in the dream state, where everything is functional. I think to myself, just reach up there and scratch it. There is confusion when nothing happens.
"Then the logical part of my brain begins to wake up and tries to convince the dream side I am paralyzed. Eventually I wake up and realize I can't scratch the itch.
"The first time this happened, it freaked me out. I thought I was going crazy. After it kept happening, though, with no lasting effect, I realized it must just be how the brain works - in a dream state I revert to a 'normal' me. I also see the world as if I can still effect change, but, of course, I cannot.
"It has been four years - I wonder if my mind will ever come to grips with what happened. In some ways, I hope it never does. At least I can still run in my dreams."
Next week in Your Home: The Evanses work together to fix up their home.