HUH?
That was my reaction, late last year, when I was contacted by a production company in England and asked to appear in a documentary. With my family.
The company, Firecracker Films, has made documentaries for the BBC, Sky, The Learning Channel and Discovery. And, they wanted me and my family for ... what?
I immediately conjured up images of my mother wandering around her yard like Edie Beale in "Grey Gardens," wearing turbans made of old green dishcloths.
Instead, it was my FATHER they wanted. In October 2007, I wrote a column in The Record about his first bout with Bonnet's syndrome, an unusual side effect of his macular degeneration.
Dad woke up one morning, looked out the window and saw non-existent shrubs on his front lawn. Other strange hallucinatory images followed.
Later that morning, in a nearby hospital ER, he saw balloons, polka dot curtains and, most eerily, his late mother walking toward him.
He was vague to doctors about what he was seeing because he was frightened and wanted to go home.
He assumed he was dying. I assumed he was experiencing a medication-related problem. But, that night, I went online, searched "macular degeneration/hallucinations" and discovered Bonnet's syndrome (identified in the 1700s by Swiss naturalist Charles Bonnet), in which patients with severe visual loss see vivid and seemingly real images of landscapes, patterns (plain white walls turned into busy brick walls) and even cartoon characters.
Dad and Bambi became great pals there for a while; Bambi still writes, periodically.
The problem comes in sieges, then disappears for months.
After the column ran I received letters from people all around the country who have dealt with this. And, when the folks at Firecracker began to consider a documentary on this strange condition, people they spoke to mentioned my article.
A month after that call from Firecracker, my father and I did telephone interviews and, later, Skype interviews with the production team. A few more months passed. Nothing. I assumed the shoot had been canceled.
But then, we were interviewed all over again. Dad. Me. My mother. Dates were tossed around.
"They're talking late August," I told my parents. "We're all going to be on TV!"
My father growled, "What are they paying me?"
"Dad, it's a documentary," I said, "they're not paying you. They'll be shooting here for a few days and ..."
"A few DAYS?" my mother screamed. "And I have to cook for all these people?"
"Who said anything about cooking?"
"Well, who's going to feed them?"
"Ma, they'll eat somewhere. And, stop complaining! This is huge! After it airs, our family will become synonymous with bizarre and occasionally grotesque hallucinations!"
Days later, the producer called again. Could I send him some photos of the house? He also wanted to know if it was possible for us to plan a "normal family dinner" with my entire abnormal family so they would shoot some supplemental footage. And, could he interview my 13-year-old niece, Talia? And ...
My sister-in-law OK'd the interview with Talia for July 16. On July 15, Tal warned her friends on Facebook that she would be busy the next day, "being interviewed for my TV show."
Naturally, her friends were curious, so she subsequently explained, "My grandpa has a desease where he sees people as like something diffrent and I hang out with himm so I'm gunna be on the documentary."
I still can't believe she spelled "documentary" correctly.
Her friends were thrilled. One explained, "I've seen those! When you're onscreen it will say, 'Talia. Grandchild.' "
My parents, meanwhile, were suddenly warming up to the idea. So was everyone else we know. Within weeks, our little onscreen "normal" family dinner grew to include, according to my mother, "Aunt Irene, baby Dominick, Marie from next door, cousin Caroline ..." and assorted other relatives who would get mad if they weren't included.
"Ma," I said, "we're shooting a documentary, not 'Gone With the Wind.' "
On Thursday, a letter arrived: "See you next month at dinner! Sincerely, Bambi."
When he's onscreen it will say, "Bambi. Fictional Deer."
After supper on Saturday, Mom asked me to drive her to the supermarket. En route, she said, "Your father won't admit it but he's excited. It's the only good thing to come out of this whole mess. I mean, we never even heard of this condition. No one in our family ever had vision problems."
She then pointed out the window and sighed, "Oh, look. A full moon. How nice."
"That's the sun," I corrected.
She squinted through the window. "Oh. Ha-ha. Where was I?"
Frankly, my biggest fear after people see my wacky family on TV is that we'll wind up getting a weekly series on Bravo.
Monday, July 26, 2010
Tuesday, July 20, 2010
Visually Impaired women swims to raise money for cancer
The Steve Omi Memorial Swim was started in 1994 in honor of Steve Omi, an avid swimmer who died of cancer one month prior to his 37th birthday.
Participant Carol Nelson, of Hayden, who is visually impaired, said she relishes the opportunity to compete on a more even playing field. Swimming events provide that, she said.
"It's something that I can still do," she said.
She said her vision has been limited by Stargardt's macular degeneration.
"I have no excuses today," Nelson said.
Last year's event winner, Bryce Kananowicz, said he just likes to swim.
But "it's fun to meet people, too," he said. "And the money goes to a good cause."
As a 13-year-old last year, he swam the mile in 19 minutes, 42 seconds.
Kananowicz, of Liberty Lake, said he wanted to beat last year's time, and planned to go out hard and get away from the pack of swimmers.
"Anything under 19 minutes is good with me," he said.
He finished in 19:41 Sunday.
Participant Carol Nelson, of Hayden, who is visually impaired, said she relishes the opportunity to compete on a more even playing field. Swimming events provide that, she said.
"It's something that I can still do," she said.
She said her vision has been limited by Stargardt's macular degeneration.
"I have no excuses today," Nelson said.
Last year's event winner, Bryce Kananowicz, said he just likes to swim.
But "it's fun to meet people, too," he said. "And the money goes to a good cause."
As a 13-year-old last year, he swam the mile in 19 minutes, 42 seconds.
Kananowicz, of Liberty Lake, said he wanted to beat last year's time, and planned to go out hard and get away from the pack of swimmers.
"Anything under 19 minutes is good with me," he said.
He finished in 19:41 Sunday.
Monday, July 12, 2010
Legally Blind Man Working to Improve Pedestrian Safety in Montgomery
The great irony for William Smith is that the worse his vision becomes, the more he sees.
There is the bus stop on Fenton Street in Silver Spring, built on a platform so close to the street that it's nearly impossible for the blind or disabled person to get to. There's the crosswalk where Georgia Avenue forks into Viers Mill Road in Wheaton that could pass as a maze. And don't even mention the construction zones that frequently block sidewalks.
Smith, 46, notices such things mainly because of his inability to see them.
The stay-at-home dad is legally blind. He has an eye disorder that progressively inhibits his central vision. But that hasn't stopped him from walking the streets of his Silver Spring neighborhood, camera in hand, to document each and every obstruction.
The hurdles he faces spurred him last year to launch a blog, Montgomery Sideways. There he chronicles the impediments he encounters, raises safety concerns for other disabled residents and lets county officials know where they have fallen short.
Smith said he seeks to raise awareness because the problems he finds aren't mere inconveniences. They are roadblocks to something much more precious: his independence.
"Initially, it was just so I could walk around," he said of Montgomery Sideways. "I realize now stuff like good sidewalks don't happen by themselves.
A need for safety
The things he notices now haven't always concerned him. His macular degeneration was diagnosed when he was 14. He still got his driver's license when he turned 16 and buzzed around the streets, not all that worried about the plight of the pedestrian.
In 1989, when he was 25, the disease progressed to the point where he could no longer drive. He was consigned to getting by on his two feet, which, to his surprise, was liberating.
"Being freed by not driving changes your perception -- it's profoundly sublime," Smith said. "Walking is the most natural thing. Knowing that his vision would continue to decline, Smith and his wife, Kathleen, moved to a house in Silver Spring close to schools, stores and churches. His mission as a self-described ambulatory activist began a dozen years ago with a sidewalk near his house. It was riddled with potholes and, apparently, bad luck.
In 1998, he was walking his two young children to school at East Silver Spring Elementary when his 4-year-old daughter tripped in a hole and hit her head. A week later, she was nearly hit by a car when a driver whipped through the crosswalk.
He first worked with parents and community officials to have that sidewalk replaced. That grew into sitting in on County Council meetings, e-mailing officials about safety concerns and trying to get the attention of his neighbors.
Smith then moved his efforts online. He "started with a discussion list, with two or three readers," said Kathy Jentz, editor and publisher of Washington Gardener magazine and a "car-free" resident of Silver Spring. "I think he was disappointed with that, and I told him, 'You might want to look into a blog.' "
Giving officials a set of eyes on the ground
He started Montgomery Sideways in October, and he's already sparking a conversation.
Smith's photo of the bus stop on Fenton Street was posted to several blogs, which caused quite a few phone calls to officials, said Jeff Dunckel, pedestrian safety coordinator for Montgomery County.
Dunckel said county officials had planned to build a ramp at the bus stop even before Smith documented the access issue, but his photos prompted them to rethink their plans. Now, instead of a ramp, the county will build a stop in a more accessible location.
The budget for the county's $5 million pedestrian safety program was cut by almost 10 percent in May, forcing the department to end its education efforts. Dunckel said Smith fills the void by being a set of eyes on the ground.
John Z Wetmore, a pedestrian advocate in Bethesda and host of the cable access television program "Perils for Pedestrians," said Smith alerts the community to hazards that often are overlooked.
"Most people have been dealing with a bad pedestrian environment for so long, they have learned to ignore it," Wetmore said.
It's his passion to correct that environment, Smith said, that commits him to the arduous task of maintaining the blog with limited sight.
Updating is "physically painful," he said. To use his computer, he has to hunch forward in his chair, sitting only a few inches from the 42-inch monitor he has set up in his basement, placing additional strain on his eyes.
It is a marked difference from the man traipsing about Silver Spring. He doesn't use a cane. There is no guide dog. Smith gets around relatively unfettered. He's trying to hold onto his independence as long as possible.
"The biggest problem is at what point do I identify myself as a blind person," Smith said. "I'm fighting it because I'm vain. I hate to admit it. I'm trying to live normally as long as I can."
There is the bus stop on Fenton Street in Silver Spring, built on a platform so close to the street that it's nearly impossible for the blind or disabled person to get to. There's the crosswalk where Georgia Avenue forks into Viers Mill Road in Wheaton that could pass as a maze. And don't even mention the construction zones that frequently block sidewalks.
Smith, 46, notices such things mainly because of his inability to see them.
The stay-at-home dad is legally blind. He has an eye disorder that progressively inhibits his central vision. But that hasn't stopped him from walking the streets of his Silver Spring neighborhood, camera in hand, to document each and every obstruction.
The hurdles he faces spurred him last year to launch a blog, Montgomery Sideways. There he chronicles the impediments he encounters, raises safety concerns for other disabled residents and lets county officials know where they have fallen short.
Smith said he seeks to raise awareness because the problems he finds aren't mere inconveniences. They are roadblocks to something much more precious: his independence.
"Initially, it was just so I could walk around," he said of Montgomery Sideways. "I realize now stuff like good sidewalks don't happen by themselves.
A need for safety
The things he notices now haven't always concerned him. His macular degeneration was diagnosed when he was 14. He still got his driver's license when he turned 16 and buzzed around the streets, not all that worried about the plight of the pedestrian.
In 1989, when he was 25, the disease progressed to the point where he could no longer drive. He was consigned to getting by on his two feet, which, to his surprise, was liberating.
"Being freed by not driving changes your perception -- it's profoundly sublime," Smith said. "Walking is the most natural thing. Knowing that his vision would continue to decline, Smith and his wife, Kathleen, moved to a house in Silver Spring close to schools, stores and churches. His mission as a self-described ambulatory activist began a dozen years ago with a sidewalk near his house. It was riddled with potholes and, apparently, bad luck.
In 1998, he was walking his two young children to school at East Silver Spring Elementary when his 4-year-old daughter tripped in a hole and hit her head. A week later, she was nearly hit by a car when a driver whipped through the crosswalk.
He first worked with parents and community officials to have that sidewalk replaced. That grew into sitting in on County Council meetings, e-mailing officials about safety concerns and trying to get the attention of his neighbors.
Smith then moved his efforts online. He "started with a discussion list, with two or three readers," said Kathy Jentz, editor and publisher of Washington Gardener magazine and a "car-free" resident of Silver Spring. "I think he was disappointed with that, and I told him, 'You might want to look into a blog.' "
Giving officials a set of eyes on the ground
He started Montgomery Sideways in October, and he's already sparking a conversation.
Smith's photo of the bus stop on Fenton Street was posted to several blogs, which caused quite a few phone calls to officials, said Jeff Dunckel, pedestrian safety coordinator for Montgomery County.
Dunckel said county officials had planned to build a ramp at the bus stop even before Smith documented the access issue, but his photos prompted them to rethink their plans. Now, instead of a ramp, the county will build a stop in a more accessible location.
The budget for the county's $5 million pedestrian safety program was cut by almost 10 percent in May, forcing the department to end its education efforts. Dunckel said Smith fills the void by being a set of eyes on the ground.
John Z Wetmore, a pedestrian advocate in Bethesda and host of the cable access television program "Perils for Pedestrians," said Smith alerts the community to hazards that often are overlooked.
"Most people have been dealing with a bad pedestrian environment for so long, they have learned to ignore it," Wetmore said.
It's his passion to correct that environment, Smith said, that commits him to the arduous task of maintaining the blog with limited sight.
Updating is "physically painful," he said. To use his computer, he has to hunch forward in his chair, sitting only a few inches from the 42-inch monitor he has set up in his basement, placing additional strain on his eyes.
It is a marked difference from the man traipsing about Silver Spring. He doesn't use a cane. There is no guide dog. Smith gets around relatively unfettered. He's trying to hold onto his independence as long as possible.
"The biggest problem is at what point do I identify myself as a blind person," Smith said. "I'm fighting it because I'm vain. I hate to admit it. I'm trying to live normally as long as I can."
Wednesday, July 7, 2010
"Champion" takes care of meeting guest needs
LOCKPORT—Teresa Fernald Howard, who works at Lockport’s Holiday Inn on South Transit Street, is the huge hotel chain’s first legally blind “Guest Experience Champion” in the country.
Howard has juvenile macular degeneration, also known as Stargardt’s disease, the most common inherited form of the condition.
“Macular degeneration refers to an abnormality of the part of the eye that’s responsible for our sharpest central vision,” explained Howard, who also lives in Lockport.
The condition doesn’t stop Howard from living a full life, and making sure that Holiday Inn guests enjoy their stay. Job requirements include “good time management” skills and putting “the guest first.”
“[Howard] has exemplary customer service skills, a wonderful sense of humor and a can-do attitude that we haven’t seen in our hotel for many years,” said Terri McDonald-Gale, marketing director at the local hotel.
Tell us about your family.
I’m from a family of six children. The first three children were not affected by this condition. The fourth child, Ken, was diagnosed with JMD when he was around age 7. I am child No. 5 and was diagnosed shortly after my brother Ken. Child No. 6 was unaffected.
And your parents?
We were blessed with two wonderful parents, Wayne and Patricia Fernald. They were devastated at first to find out the news that two of their children would become blind, and the fact that there wasn’t any treatment or cure for JMD. They took my brother and [me] to different specialists, and they ran many tests. After the initial shock, they decided they would do everything they could to
help us lead as normal lives as possible.
How?
Instead of telling us we couldn’t do things, they told us we could. They’d assist us when we asked for help, but they would let us try things on our own first. Unbeknownst to them, this was the best gift that they could have given me.
Is there a cure for JMD?
Unfortunately, at this time there still is not any treatment or cure for JMD.
I can’t drive a car, so I must depend on someone else for any transportation. I have some vision, but I cannot read normal text. I use large print and magnification tools to assist in this.
I can’t see myself in the mirror.
How do you fix your hair?
I apply make-up and style my hair by touch.
My most recent setback is losing my ability to differentiate colors. I need to ask, “What color is this?” Or use a color detector. My husband, Jason, and children have been a great help with these challenges, by reading things to me—they are excellent readers—helping me with colors, and other little things I need assistance with.
What’s a color detector?
The color detector is a device that “speaks” the color of the item you put its lens on. It is not 100 percent accurate. It once told me my black-and-white dog was olive green. Also, in the right light, my skin is called “orange.” You must have a sense of humor to deal with some of the technology.
How did you come to live in Lockport?
My husband’s job brought us to this area almost four years ago. I grew up in Tampa, Fla., until the age of 14, and then moved to Binghamton. I graduated in 1987 from Chenango Forks High School near Binghamton.
Tell us about your job.
I’ve always loved working with people. My background’s in the customer service field. Last year, I attended the National Statler Center for Careers in Hospitality Service. This is how I came to be where I am to-day.
Part of the curriculum was completing an externship. Mine was at the Holiday Inn in Lockport. From the moment I arrived at the Holiday Inn, met the staff and my on-hands training began, everything fell into place, as I felt that I had truly found the job for me. Here, I was able to actually spend time with a customer, seeing that all their needs were met in a friendly, courteous manner.
What’s the difference between good and bad service?
Hospitality is all about making guests feel like they matter, and that you’re not in a hurry to move on to the next person.
How do you like your job?
I can’t tell you how refreshing it is to wake up and look forward to going to work. Mycoworkers have been so helpful and non-judgmental. I think they appreciate my attributes and look beyond my handicap.
Who and what inspire you?
My parents, family, close friends, and my faith in God have influenced and inspired me, especially my mom, dad, sister and brothers, who encouraged me to take on challenges and not to let my vision hold me back.
Now I’m trying to teach my children to not be afraid of a challenge. I also feel God doesn’t give us more then we can handle. That’s why I was blessed with twins, a daughter, Chelsea, and a son, Cameron, who have just turned 12.
What advice do you have for readers facing challenges?
Something I’d pass on to others in a similar situation would be: Shine at what you’re good at, and allow others to notice that about you. Learn how to do things in your own way. If the end result is the same, it doesn’t matter how you got there.
And for others?
Don’t judge someone until you’ve walked in their shoes. Look beyond the handicap. Give someone a chance. You might be surprised how much they can do.
Howard has juvenile macular degeneration, also known as Stargardt’s disease, the most common inherited form of the condition.
“Macular degeneration refers to an abnormality of the part of the eye that’s responsible for our sharpest central vision,” explained Howard, who also lives in Lockport.
The condition doesn’t stop Howard from living a full life, and making sure that Holiday Inn guests enjoy their stay. Job requirements include “good time management” skills and putting “the guest first.”
“[Howard] has exemplary customer service skills, a wonderful sense of humor and a can-do attitude that we haven’t seen in our hotel for many years,” said Terri McDonald-Gale, marketing director at the local hotel.
Tell us about your family.
I’m from a family of six children. The first three children were not affected by this condition. The fourth child, Ken, was diagnosed with JMD when he was around age 7. I am child No. 5 and was diagnosed shortly after my brother Ken. Child No. 6 was unaffected.
And your parents?
We were blessed with two wonderful parents, Wayne and Patricia Fernald. They were devastated at first to find out the news that two of their children would become blind, and the fact that there wasn’t any treatment or cure for JMD. They took my brother and [me] to different specialists, and they ran many tests. After the initial shock, they decided they would do everything they could to
help us lead as normal lives as possible.
How?
Instead of telling us we couldn’t do things, they told us we could. They’d assist us when we asked for help, but they would let us try things on our own first. Unbeknownst to them, this was the best gift that they could have given me.
Is there a cure for JMD?
Unfortunately, at this time there still is not any treatment or cure for JMD.
I can’t drive a car, so I must depend on someone else for any transportation. I have some vision, but I cannot read normal text. I use large print and magnification tools to assist in this.
I can’t see myself in the mirror.
How do you fix your hair?
I apply make-up and style my hair by touch.
My most recent setback is losing my ability to differentiate colors. I need to ask, “What color is this?” Or use a color detector. My husband, Jason, and children have been a great help with these challenges, by reading things to me—they are excellent readers—helping me with colors, and other little things I need assistance with.
What’s a color detector?
The color detector is a device that “speaks” the color of the item you put its lens on. It is not 100 percent accurate. It once told me my black-and-white dog was olive green. Also, in the right light, my skin is called “orange.” You must have a sense of humor to deal with some of the technology.
How did you come to live in Lockport?
My husband’s job brought us to this area almost four years ago. I grew up in Tampa, Fla., until the age of 14, and then moved to Binghamton. I graduated in 1987 from Chenango Forks High School near Binghamton.
Tell us about your job.
I’ve always loved working with people. My background’s in the customer service field. Last year, I attended the National Statler Center for Careers in Hospitality Service. This is how I came to be where I am to-day.
Part of the curriculum was completing an externship. Mine was at the Holiday Inn in Lockport. From the moment I arrived at the Holiday Inn, met the staff and my on-hands training began, everything fell into place, as I felt that I had truly found the job for me. Here, I was able to actually spend time with a customer, seeing that all their needs were met in a friendly, courteous manner.
What’s the difference between good and bad service?
Hospitality is all about making guests feel like they matter, and that you’re not in a hurry to move on to the next person.
How do you like your job?
I can’t tell you how refreshing it is to wake up and look forward to going to work. Mycoworkers have been so helpful and non-judgmental. I think they appreciate my attributes and look beyond my handicap.
Who and what inspire you?
My parents, family, close friends, and my faith in God have influenced and inspired me, especially my mom, dad, sister and brothers, who encouraged me to take on challenges and not to let my vision hold me back.
Now I’m trying to teach my children to not be afraid of a challenge. I also feel God doesn’t give us more then we can handle. That’s why I was blessed with twins, a daughter, Chelsea, and a son, Cameron, who have just turned 12.
What advice do you have for readers facing challenges?
Something I’d pass on to others in a similar situation would be: Shine at what you’re good at, and allow others to notice that about you. Learn how to do things in your own way. If the end result is the same, it doesn’t matter how you got there.
And for others?
Don’t judge someone until you’ve walked in their shoes. Look beyond the handicap. Give someone a chance. You might be surprised how much they can do.
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