Fred Dickey's Island of Human Drama
DISEASE NARROWED HIS WORLD, DIDN'T DIM HIS SPIRIT
DISEASE NARROWED HIS WORLD, DIDN'T DIM HIS SPIRIT
By Fred Dickey Nov. 9, 2015
To be both functionally blind and deaf is to live in a cell of black silence. Where others see the glories of nature, you see shadows. Where others hear a symphony, you hear cacophony.
Beethoven would be simpatico.
In an earlier time, that is the way Peter Devlin would have ended his days, neither seeing a loving face nor hearing their words of comfort.
Peter was born in Ireland in 1960, at a time when Irish medicine was not yet ready for him as a child with Usher syndrome Type I. It is an inherited disease that causes a child to be born deaf, and beginning about age 10, gradually lose sight because of progressive degeneration of the retina.
The disease causes peripheral vision to "tunnel" and narrow. Then, around late middle age, the world goes black.
Today, Peter has peripheral vision of 3 degrees in his good eye and 1 degree in the other. Legal blindness is 20 degrees, and 180 degrees is normal. What Peter sees is like looking through a drinking straw, and even that is closing.
As we sit about four feet apart, I ask Peter what he can see of me. "Your teeth," he says. "I don't know how much longer I'll be able to see at all. Right now, everything is very crooked, fuzzy and blurry. There's some kind of light coming in, but it's losing color."
Peter's blindness catches people off-guard because his eyes focus and follow voices and sounds. On shopping trips, he occasionally bumps into people who have been known to show irritation.
His wife, Maggie, says: "Then I come along. I go, ‘My husband is blind.' They laugh, thinking I'm joking. They have no clue he really is."
The Devlins live in a comfortable Oceanside home. Peter is a retired software developer. Maggie is a special-ed teacher in Vista. They have four grown children, none of whom has the Usher affliction. Peter's younger brother, Glenn, is a novelist living in Phoenix who also has the disease.
For 19 years, Peter commuted to his job at General Dynamics in downtown San Diego.
Maggie would drive him to the Coaster. Arriving downtown, he would switch to the trolley, then walk the remaining distance. He had a white cane, but rarely used it despite Maggie's urging.
Peter retired this year because even with lip reading and visual aids such as oversized screens, work was becoming more difficult. He explains: "(Vision) was diminishing and will continue diminishing. That's why I decided to stop working and walk away. I had a very good career, but I was done."
Maggie adds that most people with Usher syndrome don't work or retire much sooner than Peter did.
Peter was responding to my verbal questions. The fact that he was able to hear them, and how that came about, is something we're going to get into.
As is typical with a life spent in deafness, his speech is careful and a bit monotonic, because his tools are not as well-oiled as yours or mine. His sentences are like threading a needle - rather plodding but precise, and just a touch uncertain. But he gets the thread through the eye.
That brings up the question of how he learned to talk. Most deaf people are schooled for years in word enunciation, but Peter never had a lesson. Somehow he learned, and neither he nor Maggie understands how.
As an infant, Peter's deafness was not recognized because he cued responses to the family dog. "I had a little dog that used to follow me around all the time. I was always with him. I'd use that dog for clues to tell me what was going on around me. If the doorbell was ringing, the dog would react. I would be observing him, and would know somebody was at the door. That fooled my parents. I also started to figure out how to read lips."
Inevitably, his parents became aware that something wasn't right and sought medical help. The opinion of Dublin doctors was that he was "retarded." Disbelieving and frustrated, they moved to New York with the expectation of better care for their 4-year-old boy.
First thing, his mother took Peter to a storefront hearing-aid shop that outfitted him with a cheap hearing aid. What resulted was not a great outcome. Initially, the boy was frightened by the rude sounds of the raucous city. The ability to hear is not all that it's cracked up to be unless, of course, you don't have it.
"One of the first sounds I heard was the subway. That terrified me and made me cry. That didn't stop me from trying different sounds. I was going around the house making a lot of different kinds of noise, trying it out. I liked it, but it drove my parents crazy."
However, hearing aids never resulted in the clarity that they can give the nominally hard of hearing. The operative question is: Do the aids help you to understand speech? For Peter, the answer was no.
Peter's years of education were, in some ways, like a lame soldier on a forced march. His grit and intelligence enabled him to stay apace with more advantaged students, which were pretty much all of them.
In pre-college years, he used his skill in lip-reading to get by in class and his diminishing eyesight to devour books. He participated in soccer and volleyball. In his spare time, he worked as a janitor.
He didn't know his vision was poor because - compared to what?
Along the way, Peter stopped wearing hearing aids altogether because there is no "aid" where there is no hearing.
"Getting through school was the most challenging thing. I will say I was largely self-taught, especially in high school. It was a very difficult time. I had to fit in and be like an actor," he says.
"At one point, during my junior year, I was thinking, ‘I have no hope. There is no way I am going to college because my (performance) wasn't that great.' I told my parents I wanted to quit school and go to work in a factory. My parents convinced me to just hang on, just keep going."
And he made it. He got through. Some things are not meant to be understood, only appreciated. And Peter's successful trek through the grades is one of them.
There is an irony in Peter's life, which is one of the few things he had no need of. He is a very good artist and spent a year in a top art school between high school and college.
Today, his paintings hang on the walls of his house, but he can barely make them out. If he had normal eyesight, who knows where else they might now hang.
Peter attended Gallaudet University in Washington, D.C. There was one major problem: Gallaudet serves deaf students and relies heavily on sign language, which Peter had never learned. So he had to pick it up on the fly.
At Gallaudet, he finally learned that he had Usher syndrome and would eventually go completely blind. It shocked him because he wasn't aware of how abnormal his sight was.
During his time at Gallaudet, he met and later married Maggie Kressin, who was not deaf but was studying for a career in assisting those who are.
He graduated from college and went on to earn a master's degree.
A decade ago, the Devlins faced the reality that Peter was close to total blindness. And being deaf as well meant that his destiny was to be like Helen Keller, that deaf-blind woman of a century ago whom every school child learned to admire, but also intuitively feared, because Helen lived a terrifying existence in a black, silent closet. Or so it seemed.
One possible solution, at least for his deafness, was the cochlear implant. That's the high-tech hearing device surgically put into the inner ear that was made famous by Rush Limbaugh.
However, there were two obstacles - one socio/psychological, the other medical.
Maggie points out that there is a group in the deaf population that rejects all such devices because they insist that a deaf existence is a natural one, and that such a device diminishes the recognition of that. The belief is that they are "normal" the way they are.
The medical reason is that given Peter's age and the length of his deafness, the chances of the device "taking" were extremely iffy. One of the two local specialists who do the procedure dragged his feet on performing the operation because of that passage of time.
Peter and Maggie then went to the other surgeon, Dr. John Vaughan, whom Maggie calls a "super nice Christian man." Vaughan agreed to do the procedure. He warned that success was a statistical long shot but worth the try.
The first of two operations was done in 2005. The implant was achieved, but that was just half the challenge. An equally critical step was manipulating the technology so it would work for Peter.
Their luck held. Audiologist Joan Hewitt stepped forward and said she would do it.
Joan Hewitt, Au.D., is head of Project TALK, a nonprofit clinic in Encinitas that mainly services the hearing needs of children. Hewitt is a specialist in the delicate procedure of making cochlear implants come alive in the sleeping ears of the deaf.
Putting scientific details aside, what Hewitt did was program the implant software and integrate it into Peter's physiology.
Hewitt says, "When Peter arrived on the implant activation day, Maggie used sign language inches from Peter's eyes to interpret everything I said. I started by using software to test in Peter's ear to begin sending sound information to his brain.
"Since Peter had never heard well, I could not begin to guess what his brain would do with sound. Amazingly, after about 90 minutes of programming, Peter pushed Maggie's hands away and said, ‘Don't interpret anymore. I think I can hear her.' And he could!"
How the Devlins now feel about both Vaughan and Hewitt would make a gushing verse on a Hallmark card.
Peter's gratitude for his delivery to the magic of sound does not grow tired. He knows the gift he has been given.
"I was afraid (the implant) would not work for me. I was going blind. I was not going to be able to see or hear. How was I going to understand my wife? Communicate with my children?
"The implant was a miracle. I never thought it could happen. It did. It changed my life."
Peter has made the most of his life, much more than could reasonably be expected. He did so with the help of a smart and devoted wife, a skilled surgeon and an expert audiologist. But mainly, he was helped by his inner self that pushed him over barriers that would cause many of us to pull up short, fearing the height.
Helen Keller, who has a cameo in this story, was the paragon of inner conquest. She had to be thinking of both herself and those like Peter Devlin when she said, "All the world is full of suffering. It is also full of overcoming."
Fred Dickey's home page is freddickey.net.
He believes every life is an adventure and welcomes ideas at [email protected]
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