By Sena Christian
Staff Writer - Benicia Herald
Before being diagnosed with Lou Gehrig’s disease, Mike Bougher was a workaholic. He spent long hours at the office as a process control systems designer and project manager for Telstar in Concord. He self-imposed a heavy workload and unknowingly stifled his emotions to handle all the stress.
Now, nine years after being diagnosed with amyotrophic lateral sclerosis (often referred to as Lou Gehrig’s disease), Bougher is paralyzed from the neck down. He uses a tracheotomy and ventilator to breathe, and he cannot move his muscles to speak. He mouths words to his wife, Jen, who reads his lips and translates.
Despite the physical constraints brought by the disease, Bougher, 42, says he is happier now than he has ever been. ALS has given him a second lease on life. “When I used to be working I was completely absorbed in my job and did not recognize the joy involved in life,” Bougher says. “Now I have more time to focus on personal growth and it has made a big difference in my quality of life.”
Bougher lives with his wife Jen in a house off Chelsea Hills Drive in Benicia. The two moved here from Walnut Creek about 15 years ago because they always liked the appeal of a small town, Jen says. The walls in their house display large, beautiful digital paintings of tulips, the First Street Café in downtown Benicia, the French Quarter in New Orleans and the ferry building in San Francisco — all created by Bougher on his computer.
Since he started designing digital art three years ago, he has completed about 70 pieces. “It is one of the only ways I can still communicate,” Bougher says. “Also, I enjoy using it to help with fundraising for ALS causes.” One of his paintings recently sold at a fundraising auction for $1,000 and proceeds from the sale of his prints ($75 each) benefit the Bay Area ALS chapter.
Raised in Vacaville, Bougher spent much of his adult life consumed with his work. In 1996, he and his wife were celebrating their anniversary in Mendocino. After they both had massages, Bougher noticed that his back muscles were twitching. Several months later, he noticed weakness in his left hand, then his left arm, right leg, right arm and hand. He started having difficulty breathing. In July 1998, doctors diagnosed him with ALS. ALS is a motor neuron disease that attacks nerve cells in the brain and spinal cord. There is no known cure or cause (about 5 percent to 10 percent of people with the disease inherited it) and it typically strikes people between the ages of 40 and 70. As many as 30,000 people in the United States have the disease at any given time, according to the Muscular Dystrophy Association. Motor neurons reach from the brain to the spinal cord and then to the muscles throughout the body. In bodies with ALS, these neurons degenerate and lose the ability to send impulses to the muscle fibers that dictate muscle movement. The disease is terminal and after diagnosis, most people are given 3 to 5 years to live. People who use life support often live much longer, although the majority of those with ALS do not choose this route, according to Bougher. He used a Bi-Pap non-invasive ventilation machine for about two years before getting a tracheotomy and ventilator in December of 2004. For Bougher, the ALS progression was quick at first, says his wife. It was not until after he quit his job that the progression plateaued. Bougher attributes the initial rapid downhill progression to the high levels of stress he experienced while he was still working.
Now he meditates, which brings him peace and encourages him to reach out to others with ALS. “The compassion I learned from that compels me to help others,” he says. He also finds fulfillment through his digital art.
To create, he uses a head pointer to interface with the computer. A reflective dot is placed on the brim of his baseball cap and reflects a beam of infrared light to track head movement. He executes mouse clicks with a switch system using a telephone headset and light-tough switch that he attached with paper medical tape. He operates the system by bulging his cheek muscles. Bougher has no formal training in art and learned how to create digital designs with Adobe PhotoShop through instructional DVDs given to him as a present. He creates multi-dimensional photo-realism and abstract images. He likes both styles equally. “I think both have a different appeal,” he says. An abstract painting — swirls of colors, layered geometric shapes — takes him between eight and 10 hours to complete. He draws inspiration from his emotions and a painting is the expression of his feelings. “Abstract is fun because it comes from deep within me and they can be completed within one sitting,” Bougher says. The photo-realism paintings take him longer because they involve fine detail. It typically takes anywhere between 80 and 200 hours for Bougher to finish a painting. “Photo-realism is fun because it is like creating an illusion to make it realistic and I get to experiment with different techniques to achieve the realism,” Bougher says. Referencing photographs or memory, he has created paintings of historical places, wine glasses, the castle at Disneyland, an archway in Columbia and a patio overlooking the ocean on the coast of Portugal, which the Boughers visited about 12 years ago. Each painting is signed with his fingerprint.
In addition to his art and involvement with several online ALS communities, he also spends his time working on the Web site for the Benicia Knitting Circle, which he designs and updates. “He’s great and he has some really beautiful artwork,” said Giovanna Sensi-Isolani, co-owner of the shop. Sensi-Isolani also notes the dedication of his wife. “She’s an amazing woman,” Sensi-Isolani says.
The Boughers still travel, although it’s harder now. They also visit Mike’s daughter, Ashyln, who lives in Vacaville and gave birth to twins in May. People with ALS may loose their physical abilities but the mind is usually unaffected. Bougher still smiles, although his face may not show it.
He thinks about the world and philosophizes about existence, getting his thoughts down on “paper” in the form of his Web site, on which he keeps an online journal. “I have lost the use of my body,” he writes, “but in return, my mind and spirit have been set free.”