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Cover Story September 25th, 2008

  Untitled Document

coverby lyle e davis

They set up 600 chairs for Gus Fleming’s Memorial Service at Hunter Park, adjacent to Hunter Industries in San Marcos.

Wasn’t enough.

They had overflow crowds that came to say goodbye to Gus. Seems like everyone loved Gus. No wonder. He loved everyone and it was just natural to give that love back.

He was taken from us way too young. This remarkable young man was only 44 years old. He had been a very active surfer . . great big smile, healthy, strong body. Lots of pals and lots of great surfing expeditions. Then his strong, athletic body began to act up. His balance wasn’t what it used to be. Where normally he’d ride the biggest waves with ease, now he found himself with difficulty just standing up on a surfboard in even mild surf conditions.

He worked at Hunter Industries in San Marcos and he began to notice he was having problems at work as well. Balance mostly. No pain. Just a problem maintaining balance. Then he told his mom . . . “Mom, I can close my right hand . . .but then I can’t open it again.”

Gus knew something was wrong and decided to check with the doctors. They ran all kinds of tests, including blood work. They sent the lab work directly to Gus and he called his mom to report that it all looked okay except for one item that puzzled him. It said “Creatinine Alert.”

Leticia Fleming, his mom, got on the Internet and began to look up diseases that were related to a high creatinine count. Since Gus was African-American, she suspected it might be Sickle Cell Anemia, a disease that only seems to affect black people. But she did not have any symptoms and it is a genetic disease that has to be passed from parent to child. The only other two were muscular dystrophy and ALS, amyotrophic lateral sclerosis, more commonly known in America as “Lou Gehrig’s Disease.”

And then came the diagnosis.

Probably no words sends a feeling of fear into someone’s heart and mind faster than to hear the words, “I’m sorry. You have Lou Gehrig’s disease . . . Amyotrophic lateral sclerosis.”

The news was devastating to Gus initially, of course. Life, as he knew it, would change. But, typical of Gus, when he told his parents that day before Thanksgiving 2005, he made his parents promise to not tell any family or friends. He didn’t want to ruin their Thanksgiving holiday. That’s the kind of guy Gus was, always thinking of others before himself.

He continued to work at Hunter Industries for as long as he was able. Both management and staff at Hunter Industries did everything they could to help Gus . . . and to look after him. Even after he was no longer able to work they continued to pay his COBRA, so his insurance coverage continued. He would continue to see all of his old surfing buddies and tell tall tales of surfing experiences.

His mom and dad, Leticia and David Fleming, would remember Gus in his younger years. “He was an excellent athlete. He played Little League, but he was primarily interested in surfing. I remember all the other coaches were disappointed that he didn’t want to come out for football or basketball. Particularly basketball . . . he was so good at that. But, at eight years of age he fell in love with the ocean . . . we used to drop him off at Moonlight Beach in the summer, with a sack lunch and he was in heaven. He spent so much time at the beach. Even later, I don’t think a day went by when he didn’t go to the beach and just look at that ocean.”

His mind was always clear, right up to the end. And, after the initial shock wore off, he accepted his fate and decided to make the best of it. To see Gus’s smile you would never now that you were talking to a man who was dying. He always had that big grin . . . always in an apparent good mood.

He loved life. He loved his mom and dad. He loved his kids. And he loved surfing . . . even when all he could do now was talk about it. There was another celebration this past Saturday. And it was an impressive one.

A crowd of about 200 people assembled at Swami’s in Encinitas, a popular park and surfing area. They were just a few of Gus’ friends who gathered together to say a final farewell, to reminisce, then to do a paddle-out, to form a cirle of surfers out in the ocean, joining hands, remembering Gus. They would scatter his ashes in the ocean he loved so much, and throw flowers into the center of the circle. And then, as one, they would hoot and holler and call out Gus’s name. They were saying goodbye to a fellow surfer. Well over 100 surfers participated in the paddleout. It was an impressive sight. Gus would have been proud.

The Paddleout, off Swami’s Beach

Photo courtesy of Todd Danner
Gus’s ashes about to be scattered. Photo courtesy of Todd Danner

But before the paddleout, his family and friends gathered in the park. They came together and remembered Gus, each in his own way:

John Moseley, commercial artist and fellow surfer: Gus and I spent 26 years sharing the waves. Gus still wanted to know about surfing even after he could no longer participate. There was just something special about the guy. We were out on the water a lot. We shared a lot of great days on the water . . . you see people out there and Gus would chat with them, with that great big grin of his, ‘How’s it going? Great waves!’ He would share waves . . .a big gift from one surfer to another. The one thing about Gus . . . his demeanor in the water. Swami’s is one of the most crowded, localized breaks on the coast, but when he paddled out you were glad to see him because he was so much fun to be around, always laughing, and smiling. He was a great surfer, one of the best. Never played, “King Local,” no attitude. He just enjoyed life. Great guy to be around, out in the water, or on the shore.

When I heard he got ill . . a cold shiver went down my spine. I wanted to see how he was doing, to find out a bit more about him. A few months ago, I went to see him. It was really hard, initially, to see him in such a beyond difficult situation. I thought I was going there to cheer him up. Forget that. He was the one cheering me up. Here he had been dealt the worst card in the deck with ALS and his demeanor was exactly the same as if he was out on the waves.

Whenever I stopped by his house, he had the same demeanor as always. No trace of self pity. The same old Gus. He ask, ‘How’s your family? How’s the surf today?’ I wasn’t expecting that. And it was really genuine. Everyone will tell you the same thing. That was the great quality about Gus, he could be genuinely interested in the welfare of others, he wanted to make you comfortable around him. And, of course, he wanted to hear about surfing.

He had great children, awesome kids. They were all very close. All full of life, full of humor. He passed that attitude on to his kids.”

Scott Davis, longtime friend of Gus’: “I met Gus almost 30 years ago to the day. He always called me, ‘Scottie the D,’ still did, right up to the end. I was just a kid, we both were. I was out at Swami’s trying to learn how to surf. He took me under his wing and taught me some things. He showed me where to surf. The place where I had been surfing didn’t have a good break . . .Gus showed me the right spots.

All these years he’s always had this great attitude, this great smile, just one of the greatest people I’ve ever known. I remember when we came out of the water the first time. He stuck his hand out and said, ‘I’m Gus.’ And that was it. Once he shook your hand, you were friends for life.

I’d like to thank his parents for teaching Gus to be brave. He’s one of the bravest guys I’ve ever known. I have the utmost respect for Gus. I have the utmost respect for his family.”

Scott Davis, “Scottie the D”

Long time friend, Chrissie Roden Preston, a 6th grade teacher at Hidden Valley Middle School in Escondido: "He was always concerned with others and their well-being. I called him when I heard how sick he was and asked what can I do. Every Sunday after that I’d always go visit him. He was always positive; I never heard him say ‘why me? I never heard him say, ‘this isn’t fair.’

Fleming, lived in the Cardiff community of Encinitas. As a special surprise while Gus was on a dream vacation to Australia and New Zealand, friends and family pitched in and remodeled his home. The makeover, which included handicap-accessible railings and ramps, allowed him to stay in his home with the help of others.

Preston said the surprise touched him as much as he touched the lives of others."He felt that everyone had done so much for him when in actuality everyone got a lot more from Gus," she said. "He brought the best out in everyone that was around him."

For more than 20 years he worked as an irrigation equipment salesman for Hunter Industries, until he quit because of complications from the disease.

Dina Newcomb, who worked with him for approximately 14 years, and who now heads her own graphic design business, said they quickly evolved from co-workers to friends. Among other things, she respected him for his ability to be himself whether he was with friends or with executives at work.

“I worked with him at Hunter. We were both in marketing. He was the kind of person that didn’t change; he was so genuine. He treated everyone the same. We became friends very quickly; we had kids about the same age. He was a sales guy and I would go on a photo shoot and get photos for Hunter; he’d hook me up with his contractor friends, loyal Hunter clients. I got a lot of good work because of his contacts and support. It was more like meeting friends rather than business associates.

One thing that happened during Gus’ illness that excites me is a program known as Share the Care. They came out and introduced a group of more than 50 friends who would volunteer to sign up for the lunch team, the dinner team, the homework team, to help observe dietary restrictions, the school pickup of kids, housecleaning, coordination of activities, almost everything you could think of. It’s a system already developed to help family members with terminally ill families. All the burden of the care is shared. Often the help dwindles . . . but not with this organization. Someone designed the concept on the east coast. We just used it. It’s just organizing volunteers. Even the administrators are volunteers.”

Fleming had grown up in the Encinitas area and attended Pacific View Elementary School, Oak Crest Middle School and San Dieguito High School.

Gus Fleming, at work with Hunter Industries

On September 4th, 2008, with his children and family by his side, Gus died.

“He went peacefully,” his mom said. “He just breathed in . . . and then out, then he didn’t breathe any more. No pain, no struggle. He just slipped away from us, peacefully. It’s the way we would all like to go.”

Fleming is survived by his children Baylee, age 16, Saige, 14 and Bryce, 10.

His parents David and Letitia Fleming said that it was good his children got to spend so much time with him. And, they said, in a way, it was also good that they saw the gradual deterioration of their dad as the disease progressed. They understood that the end was coming . . and was not the shock a sudden death would have been.

In addition to his children and parents, Gus is survived by his brothers Jason Fleming; Lydell Fleming and his wife, Pamela, and their three children Olivia, Dimitri and Myla; his sister Anitra, her husband, Navy Cmdr. Mark Glover, and their children Zachary and Jordan.

David and Leticia Fleming, Gus’s parents

And so, that is the final chapter on the Gus Fleming saga. He is an inspirational memory to those who knew him and loved him. But he is gone. A victim of Lou Gehrig’s Disease. ALS. Amyotrophic lateral sclerosis.

In researching and writing this story a line from the Rudyard Kipling’s book, and later, movie, “Gunga Din” kept tripping into my mind. A British officer, upon viewing the incredible bravery of a simple native who faced certain death and, indeed, died while fighting for his country, said, “By the Living Gawd that made you, You’re a better man than I am, Gunga Din!”

As I brought back my memories of Gus Fleming, as I listened to others speak of their special times with him, as I heard how much this young man inspired so many people . . I thought to myself, “By the Living God that made you, Gus Fleming, you’re a better man than I am!”

ALS doesn’t just affect nice young people like Gus Fleming. It is no respecter of fame, fortune, or celebrity.

Notable people living with ALS include:

British theoretical physicist Stephen Hawking

Notable people who have died of ALS include:

American baseball star Lou Gehrig (the namesake of the colloquial reference to the disease in the United States)
American baseball star Catfish Hunter (although he was diagnosed with ALS, he died from a fall down a set of stairs)
Morrie Schwartz, a college professor about whom the book “Tuesdays With Morrie” was written
Senator Jacob Javits
American jazz bassist Charles Mingus
American folk guitarist Lead Belly
Henry A. Wallace, former American Vice President
Dennis Day, American vocalist and Jack Benny co-star
Longtime Chicago television newscaster John Drury
British actor David Niven
Jon Stone The Creator of “Sesame Street”
Vietnam War survivor and prison camp escapee Dieter Dengler about whom the movie “Rescue Dawn” is based.

What is ALS?

Amyotrophic lateral sclerosis is one of those big twenty-five cent medical terms that, when broken down, pretty much describes the disease: "a" for without, "myo" for muscle, "trophic" for nourishment, "lateral" for side (of the spinal cord), "sclerosis" for hardening or scarring.

So, amyotrophic means that the muscles have lost their nourishment. When this happens, they become smaller and weaker. Lateral means that the disease affects the sides of the spinal cord, where the nerves that nourish the muscles are located; and sclerosis means that the diseased part of the spinal cord develops hardened or scarred tissue in place of healthy nerves.

ALS was around a long time before Lou Gehrig ever even thought about playing baseball. Signs of ALS were first noted way back in 1850 when English scientist Augustus Waller described the appearance of shriveled nerve fibers. Later, in 1869, French doctor Jean-Martin Charcot first described ALS in scientific literature. To this day the french refer to ALS as Maladie de Charcot, after the doctor who first wrote about it.

In 1881 "On Amyotrophic Lateral Sclerosis" was translated into English and published in a three-volume edition of Lectures on the Diseases of the Nervous System. Then, in 1939 it became widely known in America because of a New York Yankess baseball player named Lou Gehrig. It ended Gehrig’s brilliant baseball career and two years later, his life.

In the 1950’s an ALS epidemic developed amongst the Chamorro people on the island of Guam. No one really knew exactly why. Researchers have continued to study ALS as they try to understand why it happens, and how the disease damages the motor neurons in the brain and spinal cord. As they learn more about the disease, researchers can continue to develop new and better treatments.

Progress has been made . . . and continues to be made. But the answers were not received in time to save Gus.

Researchers have linked ALS to chromosome irregularities. Drugs have developed to ease the difficulty of ALS; standardized testing has been developed to expedite the diagnosis and confirmation of the presence of ALS. ALS could be a genetic problem, but the data suggests that’s not always the case. There are a number of theories but no one quite has a handle on it. Yet. The answer, we hope, is near.

Although this disease can strike anyone, it is extremely rare in kids. According to the ALS Association, most people who develop Lou Gehrig's disease are adults between 40 and 70. Only 2 out of every 100,000 people will get the disease each year. Because it is not contagious, you can't catch ALS from someone who has the disease.

Among ALS cases in the United States, 5% to 10% are hereditary, which means the disease runs in certain families. This is called familial ALS. At least 90% of cases are not inherited; this is called sporadic ALS.

How Is the Disease Diagnosed?

In general, muscle weakness, especially in the arms and legs, is an early symptom for more than half of people with ALS. Other early signs are tripping or falling a lot, dropping things, having difficulty speaking, and cramping or twitching of the muscles. As the disease gets worse over time, eating, swallowing, and even breathing may become difficult.

It may take several months to know for sure that someone has Lou Gehrig's disease. The illness can cause symptoms similar to other diseases that affect nerves and muscles, including Parkinson's disease and stroke.





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