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'Cobra' Gaynor refuses to give up
Published: Sunday | February 15, 2009
Ricardo Makyn/Staff Photographer
Barrington Gaynor at the 2009 Camperdown Classics which was held at the Stadium East field yesterday. The former national footballer and Camperdown past student was this year's honouree.
Gordon Williams, Gleaner Writer
This is the final of a two-part feature on former national footballer Barrington 'Cobra' Gaynor's battle with amyotrophic lateral sclerosis (ALS), a mysterious, paralysing - and incurable - disease. ALS is a disease caused by the degeneration of motor neurons, the nerve cells in the central nervous system that control voluntary muscle movement. Part 1 was published yesterday.
Gaynor desperately wanted answers. So, he returned to Jamaica in December 2007.
"He was getting frustrated," said Gaynor-Phillips. "He was getting weaker. He had difficulty walking ... . He wanted to go home."
On the recommendation of a friend, Gaynor visited a top neurologist in Jamaica. In January 2008, he got the dreaded diagnosis.
He returned to New York for a second opinion. An ALS research centre in Manhattan confirmed the Jamaican doctor
was right.
That revelation, however, did not soften the impact on Gaynor's family and friends. Many wept. Others were stunned with disbelief.
Plotting his course
Gaynor, a man whose life revolved around physical activity, was staring at cruel role reversal. He, however, took an entirely different approach.
"He said 'I'm not going to ask why because if it wasn't me, it would be someone else'," Gaynor-Phillips recalled. "His future was non-active. It was the exact opposite of him. It was hard to picture him like that, him not being the person we know him to be."
With Gaynor refusing to give up, the family rallied to plot his course.
"After I found out, it could not be cured I broke down," said nephew Dwayne Gaynor, who captains Bull Bay in the KSAFA Super League, a team Gaynor once played for and coached. "But after, I called up my family members and we talked about staying strong."
Research showed that embryonic stem cell implants, injected into the spinal column, legs or arms help regenerate nerves that enhance muscle functions. So, Gaynor and some family members travelled to China, a trip they said cost more than US$20,000 for the treatment alone.
The stem cells would not cure Gaynor, but hopefully act as a "maintenance thing", according to Gaynor-Phillips, slowing the progression of the disease. He was also given physical therapy. The China experiment was painful. It also failed.
"He got weaker," said Gaynor-Phillips. "He really didn't see much of an improvement, except that the stiffness wasn't as great as before in his calf."
Lifestyle changes
Gaynor has since changed his diet, consuming less animal protein and dairy products. It's heavy on green, leafy vegetables, nuts and fruits. Recently, he started a new therapy, 'Calcium AEP', more common in Europe. The hope is to stop the steady progression of ALS.
"We're trying to keep him at the stage that he is now," said Dr Janice Fisher, an integrative practitioner who has been treating him for over a month "to prevent further worsening".
Among the biggest fears for people with ALS is losing the ability to breathe on their own after the muscles that control that action fail. Many patients, confronted with the option of hooking up to a machine, choose doctor-assisted suicide. One United States expert estimated that ALS patients are 25 times more likely to take this route than those suffering from other illnesses.
For Gaynor, leaving without a fight is not up for debate. While in China, his wife, Nyoka, said she was reading a book about an ALS patient whose breathing had to be aided by a machine. Gaynor asked and was told about the contents of the book.
"He smiled and said 'That will not happen to me'," she recalled. "'I'll get better'."
Nyoka admits "at first, it was really devastating" to learn of her husband's illness. The couple no longer share Gaynor's Bull Bay, St Andrew, home.
But she is quick to dismiss what she terms "ugly rumours" as to why she left for Portmore, St Catherine, with Juanell.
Both sides of the family declined to discuss the details of her move. But the 36-year-old said she visits her husband often with their child and they are "still together".
Cancer killed Gaynor's father, but no one in the family has ever suffered from ALS.
Most had not even heard of the disease before it literally hit home.
It's still not clear what causes it. In Guam, for example, there was an unusually high number of ALS cases, which some linked to a particular fruit the country's natives ate. Some speculate that Gaynor's prolonged football career, which would involve heading the ball repeatedly, could be linked to the disease. A study done in Italy a few years ago found an unusually high number of football players among ALS victims. But no official link was made between the game and the disease.
Meanwhile, Gaynor's battle with ALS means adjustments have to be made. His mother, who usually resides in the US, has stayed in Jamaica longer to help look after him.
The family is building an additional floor to their home to accommodate those who visit Gaynor.
Others such as Dwayne and friends make time to help out.
No money worries
Gaynor has several business ventures and contributions from his family remain steady, so there are no immediate money worries. Health insurance helps to defray some costs.
Last year, Portmore United Football Club gave Gaynor a donation.
But he has not received any financial assistance from the Jamaica Football Federation or Harbour View, his long-time club which he helped win many major trophies.
He has not asked either.
However, the east Kingston team, said Gaynor, is not forgotten.
"We're 100 per cent behind him," said Harbour View's boss Carvel Stewart. "He knows that if there is any need, he can just contact me. His family is strong, but we are here to help."
There is no shortage of love for Gaynor. He feels it from everywhere, in and outside the football community. Nearly everyone at Nine Miles, Bull Bay, knows where 'Cobra' lives.
Adults and children who pass his home, situated on a narrow road mixed with paved and dirt areas in Windsor Lodge, wave and shout his name.
Ronny Amaguana, who plays for Harbour View, has been Gaynor's friend from the day the American arrived to play for Bull Bay a few years ago. Amaguana stays at one of Gaynor's homes in Bull Bay. He too, gladly pitches in.
"We're more like family now," he said. " ... He's given me a helping hand. Anything he needs, I'll do."
Gaynor's telephone is put on speaker when calls come in. He responds often through Dwayne.
But some people who have known Gaynor well have stayed away. They claim to need more time to accept his situation. Others struggle to understand his tragic transformation.
"It is very difficult," said Andrew 'Bower' Hines, who played with Gaynor for Camperdown, Harbour View and Jamaica. "Cobra has always been the one for everyone to look up to ... (His situation) hurts me. My heart bleeds for him."
Gaynor's football career, from national player to coach, offers a neat insight into the unpredictable nature of sport. He once coached Bull Bay from the lower leagues to the local premiership. But he was fired by Waterhouse FC when the team struggled. Gaynor's confidence never wavered.
"He had serious ambitions as a national coach," said Patrick 'Jackie' Walters, who coached him at Camperdown.
However, his battle with ALS has been far more instructive, showing many how vulnerable they can be.
"It's something that I talk about," said Portmore United coach Linval 'Rudy' Dixon, who played alongside Gaynor for Jamaica, including the victorious Shell Caribbean Cup squad in 1991. " ... It can happen to anyone of us. It's really sad."
Nyoka wonders how this saga will eventually play out. She gets better at coping and her husband still makes her laugh, especially when he chastises people who, because of their ignorance of the disease, believe that ALS has somehow robbed his mind.
"Sometimes, they are talking like he's not hearing," Nyoka explained. "He'll say 'I have ALS, not deaf!'"
Family, friends and co-workers support her, but she has a hard time making them understand.
"When I tell people about ALS, they say 'What is that?'" she said.
Affecting his children
But people know 'Cobra'. They want to know what happened to him. But what is unclear is how Gaynor's illness will affect his children. If the ALS progression is not stopped, it will become increasingly impossible for the girls to communicate with their father. It's already confusing.
Shanice, a beautiful high school first-former, paused for a bit before offering her view.
"I know that he is sick," she said calmly. "I don't know why."
Juanell was told that all is not well after she noticed the strange way her dad had started to walk. But she figured out her own way to help.
"Once we went to church," recalled Nyoka, "and my sisters and my father asked Juanell if she prayed for them and she said 'No, I prayed for my father!'"
Gaynor feels that. It arms him for the battle ahead.
"I want to thank all the people who have been supporting and praying for me," he wrote in a recent email. "They send up the prayers and my blessings come down daily and I am really grateful because prayer changes things. My blessings have made it easy for me to go through this very demeaning period of my life. I would like to request more prayer."
In football, they say if you make the correct pass, you will get good passes in return. It appears that the man rated among Jamaica's best ever fullbacks made the right connections long ago.
And even if the smile should fade from his face, everyone who knows him is sure it's still in his heart.
Published: Sunday | February 15, 2009
Ricardo Makyn/Staff Photographer
Barrington Gaynor at the 2009 Camperdown Classics which was held at the Stadium East field yesterday. The former national footballer and Camperdown past student was this year's honouree.
Gordon Williams, Gleaner Writer
This is the final of a two-part feature on former national footballer Barrington 'Cobra' Gaynor's battle with amyotrophic lateral sclerosis (ALS), a mysterious, paralysing - and incurable - disease. ALS is a disease caused by the degeneration of motor neurons, the nerve cells in the central nervous system that control voluntary muscle movement. Part 1 was published yesterday.
Gaynor desperately wanted answers. So, he returned to Jamaica in December 2007.
"He was getting frustrated," said Gaynor-Phillips. "He was getting weaker. He had difficulty walking ... . He wanted to go home."
On the recommendation of a friend, Gaynor visited a top neurologist in Jamaica. In January 2008, he got the dreaded diagnosis.
He returned to New York for a second opinion. An ALS research centre in Manhattan confirmed the Jamaican doctor
was right.
That revelation, however, did not soften the impact on Gaynor's family and friends. Many wept. Others were stunned with disbelief.
Plotting his course
Gaynor, a man whose life revolved around physical activity, was staring at cruel role reversal. He, however, took an entirely different approach.
"He said 'I'm not going to ask why because if it wasn't me, it would be someone else'," Gaynor-Phillips recalled. "His future was non-active. It was the exact opposite of him. It was hard to picture him like that, him not being the person we know him to be."
With Gaynor refusing to give up, the family rallied to plot his course.
"After I found out, it could not be cured I broke down," said nephew Dwayne Gaynor, who captains Bull Bay in the KSAFA Super League, a team Gaynor once played for and coached. "But after, I called up my family members and we talked about staying strong."
Research showed that embryonic stem cell implants, injected into the spinal column, legs or arms help regenerate nerves that enhance muscle functions. So, Gaynor and some family members travelled to China, a trip they said cost more than US$20,000 for the treatment alone.
The stem cells would not cure Gaynor, but hopefully act as a "maintenance thing", according to Gaynor-Phillips, slowing the progression of the disease. He was also given physical therapy. The China experiment was painful. It also failed.
"He got weaker," said Gaynor-Phillips. "He really didn't see much of an improvement, except that the stiffness wasn't as great as before in his calf."
Lifestyle changes
Gaynor has since changed his diet, consuming less animal protein and dairy products. It's heavy on green, leafy vegetables, nuts and fruits. Recently, he started a new therapy, 'Calcium AEP', more common in Europe. The hope is to stop the steady progression of ALS.
"We're trying to keep him at the stage that he is now," said Dr Janice Fisher, an integrative practitioner who has been treating him for over a month "to prevent further worsening".
Among the biggest fears for people with ALS is losing the ability to breathe on their own after the muscles that control that action fail. Many patients, confronted with the option of hooking up to a machine, choose doctor-assisted suicide. One United States expert estimated that ALS patients are 25 times more likely to take this route than those suffering from other illnesses.
For Gaynor, leaving without a fight is not up for debate. While in China, his wife, Nyoka, said she was reading a book about an ALS patient whose breathing had to be aided by a machine. Gaynor asked and was told about the contents of the book.
"He smiled and said 'That will not happen to me'," she recalled. "'I'll get better'."
Nyoka admits "at first, it was really devastating" to learn of her husband's illness. The couple no longer share Gaynor's Bull Bay, St Andrew, home.
But she is quick to dismiss what she terms "ugly rumours" as to why she left for Portmore, St Catherine, with Juanell.
Both sides of the family declined to discuss the details of her move. But the 36-year-old said she visits her husband often with their child and they are "still together".
Cancer killed Gaynor's father, but no one in the family has ever suffered from ALS.
Most had not even heard of the disease before it literally hit home.
It's still not clear what causes it. In Guam, for example, there was an unusually high number of ALS cases, which some linked to a particular fruit the country's natives ate. Some speculate that Gaynor's prolonged football career, which would involve heading the ball repeatedly, could be linked to the disease. A study done in Italy a few years ago found an unusually high number of football players among ALS victims. But no official link was made between the game and the disease.
Meanwhile, Gaynor's battle with ALS means adjustments have to be made. His mother, who usually resides in the US, has stayed in Jamaica longer to help look after him.
The family is building an additional floor to their home to accommodate those who visit Gaynor.
Others such as Dwayne and friends make time to help out.
No money worries
Gaynor has several business ventures and contributions from his family remain steady, so there are no immediate money worries. Health insurance helps to defray some costs.
Last year, Portmore United Football Club gave Gaynor a donation.
But he has not received any financial assistance from the Jamaica Football Federation or Harbour View, his long-time club which he helped win many major trophies.
He has not asked either.
However, the east Kingston team, said Gaynor, is not forgotten.
"We're 100 per cent behind him," said Harbour View's boss Carvel Stewart. "He knows that if there is any need, he can just contact me. His family is strong, but we are here to help."
There is no shortage of love for Gaynor. He feels it from everywhere, in and outside the football community. Nearly everyone at Nine Miles, Bull Bay, knows where 'Cobra' lives.
Adults and children who pass his home, situated on a narrow road mixed with paved and dirt areas in Windsor Lodge, wave and shout his name.
Ronny Amaguana, who plays for Harbour View, has been Gaynor's friend from the day the American arrived to play for Bull Bay a few years ago. Amaguana stays at one of Gaynor's homes in Bull Bay. He too, gladly pitches in.
"We're more like family now," he said. " ... He's given me a helping hand. Anything he needs, I'll do."
Gaynor's telephone is put on speaker when calls come in. He responds often through Dwayne.
But some people who have known Gaynor well have stayed away. They claim to need more time to accept his situation. Others struggle to understand his tragic transformation.
"It is very difficult," said Andrew 'Bower' Hines, who played with Gaynor for Camperdown, Harbour View and Jamaica. "Cobra has always been the one for everyone to look up to ... (His situation) hurts me. My heart bleeds for him."
Gaynor's football career, from national player to coach, offers a neat insight into the unpredictable nature of sport. He once coached Bull Bay from the lower leagues to the local premiership. But he was fired by Waterhouse FC when the team struggled. Gaynor's confidence never wavered.
"He had serious ambitions as a national coach," said Patrick 'Jackie' Walters, who coached him at Camperdown.
However, his battle with ALS has been far more instructive, showing many how vulnerable they can be.
"It's something that I talk about," said Portmore United coach Linval 'Rudy' Dixon, who played alongside Gaynor for Jamaica, including the victorious Shell Caribbean Cup squad in 1991. " ... It can happen to anyone of us. It's really sad."
Nyoka wonders how this saga will eventually play out. She gets better at coping and her husband still makes her laugh, especially when he chastises people who, because of their ignorance of the disease, believe that ALS has somehow robbed his mind.
"Sometimes, they are talking like he's not hearing," Nyoka explained. "He'll say 'I have ALS, not deaf!'"
Family, friends and co-workers support her, but she has a hard time making them understand.
"When I tell people about ALS, they say 'What is that?'" she said.
Affecting his children
But people know 'Cobra'. They want to know what happened to him. But what is unclear is how Gaynor's illness will affect his children. If the ALS progression is not stopped, it will become increasingly impossible for the girls to communicate with their father. It's already confusing.
Shanice, a beautiful high school first-former, paused for a bit before offering her view.
"I know that he is sick," she said calmly. "I don't know why."
Juanell was told that all is not well after she noticed the strange way her dad had started to walk. But she figured out her own way to help.
"Once we went to church," recalled Nyoka, "and my sisters and my father asked Juanell if she prayed for them and she said 'No, I prayed for my father!'"
Gaynor feels that. It arms him for the battle ahead.
"I want to thank all the people who have been supporting and praying for me," he wrote in a recent email. "They send up the prayers and my blessings come down daily and I am really grateful because prayer changes things. My blessings have made it easy for me to go through this very demeaning period of my life. I would like to request more prayer."
In football, they say if you make the correct pass, you will get good passes in return. It appears that the man rated among Jamaica's best ever fullbacks made the right connections long ago.
And even if the smile should fade from his face, everyone who knows him is sure it's still in his heart.