Imagine that you’re losing your vision. What would you miss most?
“I would like to be able to read my music,” said Jeanne Cartier, 83, of Saco. “And my recipes.”
Cartier has macular degeneration, an insidious condition common among people over 50 that adds a cruel twist to what we euphemistically call the “twilight years.”
One minute you’re watching the world go by, the next you’re straining to read the newspaper or distinguish between colors or, heaven forbid, recognize a familiar face.
“Tell me about your music,” said Dr. A. Jan Berlin, also 83, as Cartier sat recently in his exam room. “What kind of music do you want to play or see?”
“I sing,” Cartier replied with a smile. “I’m in a chorus.”
“So am I,” Berlin said. “What chorus are you in?”
“Tri City. What chorus are you in?”
“I’m in ChoralArt.”
Cartier’s face lit up: “Oh, I go to your programs!”
Berlin nodded and smiled back: “We just sang with the PSO this Friday.”
“I’ve been with Tri City Community chorus since they started,” Cartier explained. “We’re in our 21st year.”
“Oh,” Berlin said as he put down one specialized magnifier and picked up another. “Cool.”
Welcome to the Iris Network’s Low Vision Clinic, a ray of hope for Mainers who fear – often prematurely – that their seeing days are all but over.
Berlin, a not-so-retired ophthalmologist, founded the Portland clinic in 2005 to address a woefully underserved population: folks whose vision has faded to the point where eyeglasses or low-end magnifying glasses no longer get the job done.
For many, that can mark the start of a slippery slope into depression, isolation, even visual hallucinations – not unlike the one Cartier had recently of someone standing in her empty kitchen. It looked like her daughter, who wasn’t even in the house at the time.
“I thought, ‘Oh my, I must be losing it,’ ” she recalled.
Actually, Berlin said, she was experiencing Charles Bonnet syndrome, first detected by a man of that name in 1760 and now considered fairly common among people with partial or severe blindness.
“My job is to assure you and say you’re not going crazy. It happens,” said Berlin.
“That’s good to know,” said Cartier. “That’s quite good to know.”
Berlin, who followed his long medical career with several years as development director for the nonprofit Iris Network, created the clinic because too many people like Cartier had no place to go once their eye doctors told them they were beyond the help of typical corrective lenses.
He took courses in the treatment of low vision and, in a stroke of luck, secured $50,000 worth of equipment for just $15,000 after learning that a low-vision clinic was closing on Long Island, New York.
He’s operated on a shoestring ever since. He does his own secretarial work and, working with an occupational therapist who specializes in vision, has managed to get by on Medicare and other insurance reimbursements.
The goal is twofold.
First, determine the cause and extent of the vision loss with an examination that can easily last 45 minutes – lots to talk about, after all.
Then, with the help of an on-staff occupational therapist, match the patient with a hand-held, illuminated magnifier or a clip-on magnifier that fits over eyeglasses.
For those who can afford them, at anywhere from $600 to $6,000, the clinic also offers newfangled video magnifiers that transform a printed page into a video image that can be blown up and adjusted to perfect clarity – even for someone who can’t read the top line of an eye chart.
At five patients per day, three days a week, Berlin has served thousands of people from all over Maine in the 13 years since he set up shop. His goal all along has been to do it for 15 years and then hand it over to someone more interested in helping people see than in making a ton of money.
“You’re not going to get rich doing this,” he said.
And therein lies a dilemma.
Recently, the clinic’s occupational therapist moved on to another position. Others have filled in, but Berlin has been unable to find a permanent replacement.
The problem isn’t just operational. Take away the insurance payments to a qualified therapist and the clinic’s business plan collapses.
“Without that OT, without that other billing component, we are not financially viable,” Berlin said.
Thus, much as he wants to keep going, Berlin has stopped booking patients beyond this Tuesday. After that, he can only hope that a new therapist with the necessary vision training will come knocking.
David Barnwell, president and executive director of the Iris Network, said last week that the clinic’s adaptive equipment will still be available for patients to try by appointment. Those with more complicated needs will be referred to the Maine Department of Labor’s Division for the Blind and Visually Impaired, he said.
And the clinic? According to Barnwell, the search for a new occupational therapist goes on.
Here’s hoping they find one. To appreciate how much good the Low Vision Clinic has done all these years, look no further than the smile on Jeanne Cartier’s face as she checked out with her new illuminated magnifier – price tag, about $65.
“This brings sunshine to an otherwise miserable day,” Cartier said, noting that her daughters won’t have to upsize her recipes after all.
Even better, she told Berlin, “I won’t have to turn in my (chorus) uniform!”
“Don’t!” Berlin replied. “I don’t want you to!”
Soon, Cartier and James, her husband of 62 years, will head south for the winter to Florida, where her other chorus awaits. Clutching her new magnifier while Berlin finished up his paperwork, she mused quietly, “Music is good for the soul.”
“Oh my, it sure is,” Berlin agreed. “It sure is.”
Anyone can see that.
Bill Nemitz can be contacted at:
bnemitz@pressherald.com
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