To Speak Again -- Trumpeter With Als Hopes Eyes Will Serve As His `Voice'

In the video, the veins and tendons in Richard Burdell's muscular arms pulsed and strained as his fingers danced along the trumpet keys at Oregon's Mount Hood Jazz Festival in 1982.

Between solos, his handsome face flashed a boyish grin.

But it wasn't long after the Mount Hood performance that Burdell stopped playing.

His broad, long-fingered hands are idle now.

His legs are thin. The strong thigh and calf muscles that gripped water skis behind a motor boat speeding him around Lake Washington near his boyhood Mercer Island home, are atrophied.

Only his eyes move.

A respirator breathes for Burdell, and tubes feed him through his stomach. Six and a half years after he was diagnosed with amyotrophic lateral sclerosis (ALS) - a rare degenerative nerve disease more commonly known as Lou Gehrig's disease - Burdell, 41, has lost control of his body.

He was told he had 18 months to live when he was first diagnosed in November 1984. His condition has stabilized. But only in his eyes is there hope of speaking again.

Through electrodes implanted in his cranium, tunneled under the skin to a radio transmitter placed in the shoulder, Burdell will be able to operate a specially designed computer screen with his eyes. The electrodes will read his gaze, allowing him to speak 10 to 15 words a minute through a voice synthesizer. He could also operate a word processor and control the power, volume and channels on his

television, VCR, and stereo.

The procedure, the first to use electronic brain signals for rehabilitation, was developed by Erich E. Sutter of the Smith-Kettlewell Eye Research Institute in San Francisco. It allows the severely physically disabled to communicate. Sutter has selected Burdell as a prime candidate for the implant, the second person to undergo the procedure since it was completed in 1988.

ALS strikes one in every 100,000 people, and runs in families in only 10 percent of those cases. The Burdell family was one of those 10 percent. His mother, Lois Burdell, died of ALS in 1973, 18 months after her diagnosis and six months after her husband, Charles Burdell Sr., succumbed to heart disease.

Burdell has grasped the brain implant as a communication lifeline. But his freedom carries a price tag: $30,000 for the surgery, weeklong hospital stay and equipment. His sister, Cindy Burdell, together with contemporary jazz pianist Tom Grant and Burdell's other friends and supporters, have raised more than $20,000, and are working on the rest.

"Everything has a slight bit of urgency," Grant said. "Time goes slowly for Richard Burdell. He has beat the odds. He seems unstoppable. But it's wasted time. If he had the ability to communicate, he could accomplish so much."

Communication now is a laborious alphabet game, a life-and-death version of the "Wheel of Fortune" television game show. One of his attendants in his small Portland home - five share around-the-clock care - stands in front of him and asks, "First half?"

If yes, Burdell sustains eye contact.

If not, he glances away.

Burdell's gaze remains down as the attendant begins reciting the letters of the alphabet, eyes rising up once the correct letter is reached. On to the next letter until a sentence is formed. Sometimes the attendant guesses a word from the first few letters - bonus points for Burdell, saving him the painstaking effort of completing the word.

The process restricts what he can say. But Burdell thinks a lot. His mind has remained firm, his wit sharpening with each physical loss. His eyes and ears watch and gather information silently: basketball scores, international news, medical breakthroughs in research on rare diseases.

During the past six years, Cindy has watched her 6-foot younger brother undergo a metamorphosis. They have always been close, and the death of their parents drew all three siblings - Richard, Cindy and Charles Burdell Jr., a Seattle attorney and former judge - closer together.

The two older siblings graduated from Mercer Island High School, Charles in 1962 and Cindy in 1965. But Richard left for a private boarding high school in Menlo Park, Calif., at 14. He regretted never getting to know his parents as adults, Cindy said.

As her younger brother's condition deteriorated, Cindy sold her University District bookstore, the former Arbur Books, and moved to Portland in July 1986 to be closer to him.

"When I think about Richard now I think about him in the condition he is in," Cindy said. "When I remember what he was like before, I remember him as if he was a different person. But his personality I don't think has changed much. Richard always was intensely interested in communication."

Burdell has a lot he would like to say about the situation ALS has left him in. He already knows the first topic he would write about.

"A-L-S," attendant Linda Quillin spelled. "What it is like to have ALS. Some of your insights for anyone who has ALS or a life-threatening disease who would benefit from your insight," Quillin continued, scanning Burdell's face for agreement as he maintained eye contact. "Those weren't his words, but I know what he would have said from all the times we have talked about it."

Burdell raised an eyebrow for emphasis. He continued spelling: "I have lots of stories to tell."

From a hospital bed in the middle of his small living room, Burdell directs his attendants and holds court for visitors. Grant, who met Burdell in 1975 while playing in the jazz clubs in Portland, said that when Burdell was well, he used to joke about being so lazy he would install a hospital bed in the middle of his living room so he could run his life from his bed.

"It's eerie; it's exactly what his life has become," Grant said.

Visual stimuli are strategically placed in view of his bed or nearby wheelchair: an aquarium with a half dozen tropical fish splashing bright colors of red, yellow and electric blue, photographs of Burdell water-skiing off Mercer Island, and playing a duet with the late trumpeter Woody Shaw. And there are old photos of his parents: his late mother in a hat, an old black-and-white of his late father, an attorney at the Nuremburg War Trials, seated next to Nazi Hermann Goering. Burdell's trumpet rests on the mantle.

He still makes occasional visits to Portland jazz clubs, and musicians there have played three benefits to raise money for Burdell's $6,000 monthly care.

"Most of Richard's friends have stuck by him," Grant said. "The communication is the hardest thing. It is uncomfortable. People do not know what to say. Richard was always the funniest guy and the most verbal. He would dominate conversations."

Grant said that when Burdell was first afflicted with the disease, he said he wouldn't want a respirator if it came down to that.

"When it came time, he said, `I want the respirator, I want to live,' " Grant recalled. "Most people who get ALS waste away and die because they don't have the will to live. Richard has that will."

Spelling tires Burdell. His respirator quickens its pace and veins pulse intermittently around his temples and eyes. Burdell began to spell a sentence beginning with, "I am glad . . .," but he never finished it. His eyes tired and could not continue.

Only Burdell knows, but it could be he is glad to be alive.

Contributions can be sent to The Richard Burdell Fund, P.O. Box 25711, Portland, OR 97225. ------------------------------------------------------------

Richard Burdell wrote the following on June 17, 1988, when he was still able to operate a computer with his head:

I sometimes forget how hard what I am doing is. It takes a SMALL AMOUNT of courage to do what I'm trying to do. I mean I've gotten through not being able to itch, to relax if a spider crawls up my leg . . .

By far the most rude experience is waking up every morning and realizing your predicament. I recall the first morning after I had come home from the hospital, the horror I felt instantly upon waking. It was like a sentence had been put on my life and there was no escape . . .

It's really wonderful sleeping, I totally forget myself and my condition. Most recently, my last visit to the hospital, I dreamed of myself skipping through the hospital wings with Sheri ( his ex-wife), looking for a Coke machine, having an incredible thirst for a large drink. Of course, I hadn't had anything in my mouth for months, (but) I was there.

I know for sure now that if I really want to continue this existence, I'm on my own. More and more, the people around me are figuring out that there's no way they can remain close to me and have a life of their own, too. I want to make sure that everyone knows that I understand and I thank everyone for the time they have spent with me. Furthermore, it's probably better for me to have people around me that I don't feel guilty about asking for things, as I will always have to. I feel bad when I know that friends feel obligated to be with me. It's probably the worst part.

My life is so very slow now. I've developed a lot of patience I never had before, and probably never would have if I hadn't gotten ALS - BIG PLUS, HUH?! I look back on all the hell I've been through with this disease and wonder why I fight so hard to stay alive? It's the worst now that I'm so isolated, but it's the rare times the comfort of my body and the people with me manage to coincide . . .