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Staying focused: Remarkable
Woman Takes Train Accident, Disabilities in Stride By
Blair Anthony Robertson - Bee Staff Writer
From Sacramento Bee
On July 30, 1997, Mary Dignan was crossing a downtown Sacramento street in what she later described as "my typical determined Dignan dash."
She was 42, a lawyer in a jade green suit, racing to a meeting. Mary had a hundred different thoughts going through her head and all she had to do was look both ways. As determined as she was, Mary never made it across that street.
All she had struggled to attain in her life, all she had done to overcome her disabilities, was about to come crashing down. The exhausting nights of going back to law school while running her own consulting business, the battle to keep her marriage afloat, all those friendships she had forged with such devotion, the effort and extra effort and superhuman effort just to make it through each day, to fit in, to thrive, was it all going to end like this? In a thud, a blur, a tumble, and then silence?
The thud was the sound of the slow-moving light-rail train slamming into a woman whose "Dignan dash" was getting harder and harder to muster: She was legally blind -- her vision was like peering through a drinking straw -- and virtually deaf.
Two years later Mary would come into public view when she persuaded the Sacramento Zoo to allow her guide dog on its grounds. It was one story among many, soon to be overtaken by the next day's events. But there was so much more to the woman holding on to that dog harness. Her life, her bumpy, tumbling, dizzying journey, is a lesson in perseverance.
Mary always found a way to do what she had to do. It just was extra hard.
So was crossing the street.
When the train stopped, Mary's head was under the wheel. Blood spilled onto the pavement. It was 9 a.m. at the corner of Ninth and O streets. It was a cloudy morning, 64 degrees. And some crazy woman had just stepped in front of a train.
Those who rushed to her aid, the frantic strangers crouching over her, the police, the paramedics, could not possibly realize that this was no ordinary mishap, nothing clumsy or careless or crazed about it. This was an accident that was meant to be. One way or the other, an accident that had to happen.
A good Samaritan at the scene called her husband, Andy Rosten, who was at work at his home renovation business. He beat the ambulance to UC Davis Medical Center. Andy was concerned but not surprised. Mary had been bumping into things all her adult life.
Mary Ellen Dignan was born Oct. 14, 1954, in Dallas, Texas, and immediately there was concern. She was not responding the way normal babies do and she had countless temper tantrums. Doctors eventually told Mary's parents that their little girl was mentally retarded.
David and Betty Dignan never accepted that jarring diagnosis. Doctors finally discovered Mary's hearing problems when she was nearly 5 years old. She was fitted for a hearing aid.
The first time it rained after that, Mary was elated. "It has a sound! It has a sound!" she exclaimed.
David Dignan's career in the cotton business led the family to Guaymas, Mexico, for a few years, then to Corcoran, a Valley farm town near Fresno.
Mary was only learning to talk when she entered kindergarten. All of the excitement and energy and stimulation, and Mary had no words for any of it. Her parents resisted efforts to place Mary in a school for the deaf. They wanted her to be like everyone else.
It was a struggle at first, but Mary took to school and thrived, though she always felt different. She loved to read and her mother read to her often. Sure, she wore a hearing aid, but she managed to joke about it, to put people at ease and show them it was no big deal. As a prank at Corcoran High School, Mary would sometimes cup her hand over the hearing aid and make it whistle when teachers turned their backs.
"There was never any doubt in my mind that I could do anything I wanted to do," said Mary, recalling her childhood while sitting in the living room of her Pocket-area home. "I think that is one of the critical missing elements I see today in most kids who have a disability. They don't seem to have that quiet, firm expectation that they can do anything."
All through her childhood, Mary fudged on eye exams, peeking through the fingers of her right eye so no one would realize she couldn't see out of her left. That was the start of a lifelong pattern for Mary: She covered so well that people were slow to catch on about her disabilities. And that's the way she wanted it. She was always two steps ahead of what nature had dealt her. But she couldn't run forever.
She would be 20 before she was diagnosed with retinitis pigmentosa, a progressive disease that essentially kills sensory cells in the eyeball, gradually narrowing the field of vision, usually to the point of blindness.
First, her night vision went. Then her peripheral vision. The average person has a visual field of 160-180 degrees. Mary's was maybe 20 degrees and shrinking, enough for her to be considered legally blind. That was in 1975. Yet Mary would drive for another 14 years.
The double whammy -- the bad hearing, the eroding vision -- meant Mary had Usher Syndrome, a rare hereditary disease that affects both senses. But it would be another decade before she even heard of the disease. About 10,000 to 15,000 people in the United States have Usher Syndrome in varying degrees of severity. Those with Usher Type I are born deaf, have balance problems, do not learn to talk and have symptoms of RP from the start. Mary has Usher II, which causes hearing problems from birth and leads to being considered legally blind in early adulthood. Usher III is a milder form.
"I worked so hard to make my hearing a non-issue that I don't think anybody realized how much I depended on reading lips," she said.
For Mary, the prospect of blindness was devastating. How would she be able to read lips? How would she communicate? She was a junior in college. Years later, Mary would realize that blindness was not the worst of it, that she would rather lose her sight than her hearing because so few of her friends know sign language. Being deaf, she would conclude, is more isolating than being blind.
Mary pressed on, earning her English/written communication degree at the University of Santa Clara in 1976.
She landed a job at the Visalia Times-Delta newspaper as a typist. She knew she was overqualified, but all she wanted was a chance to write. She got one, she jumped at it, and her enthusiasm swept over the newsroom. When Mary was promoted to reporter, her colleagues gave her a standing ovation.
She eventually became the farm reporter and developed a deep understanding of water resource issues. Water and what it meant to California would become her passion. In 1979, she landed a job with Tony Coelho, a Democratic congressman from Merced.
In Washington, she met Patty Rominger, playing in an employee touch football game. They remain the closest of friends to this day.
"I thought Mary had a lot of chutzpah to be there with her hearing aid," recalled Rominger, who now lives in Winters. "She and I just gravitated toward one another and had equally competitive spirits. She was real gung-ho about life. Nothing was going to stop her."
By 1981, Mary returned to California to work as a consultant in Sacramento for the California Assembly Committee on Agriculture. She moved to Bakersfield in 1983 for a job as an administrative assistant for the Kern County Water Agency in Bakersfield. Her career was on the rise.
One night she was poring over every page of the local newspaper ("I was bored out of my gourd,") and noticed there were only two personal ads. On a whim, she responded to one, from a man looking for intelligent conversation. That's how she met Andy Rosten, a Cornell University graduate working in Bakersfield.
"I was no Don Juan," Andy said, explaining why he placed the ad. They met. They hit it off. There was plenty of intelligent conversation. They married. Mary's disabilities were not an issue, he said.
It wouldn't always be so simple.
"I never had any doubt," said Mary, smiling as she looked at Andy, "that I was worth marrying. That is pretty fat-headed, but it's true."
But Mary's struggles were catching up to her and she was starting to crack. They moved to Napa. Andy worked in Oakland and Mary, who had started a water policy consulting business, had to commute to Sacramento, 66 white-knuckle miles each way. With her vision in decline, Mary worried she could have an accident at any moment. In those days, her field of vision was like looking through a paper towel roll. Changing lanes was a monumental act.
"After a while, I couldn't take the drive any more," Mary said. "I was a pressure cooker. I was a screaming banshee."
Eventually, they bought a house in Sacramento. Mary's acuity, or visual sharpness, was still good in a limited area, but her field of vision was shrinking, narrowing to 8 percent. Her marriage was tense and confused. She could not tell her husband how she was feeling.
"I was coming home," Mary said, "and being so strung-out and exploding with anger, but I wasn't talking to Andy. He was getting signals, but it wasn't in language that he could understand."
With the marriage at a breaking point, Mary and Andy dug in. They enrolled in a 10-week course at the Creighton Health Institute in Menlo Park in the San Francisco Peninsula. Now called the Cancer Support and Education Center, it offers the $1,600 self-empowerment course for people with serious illnesses and their support partner.
"Andy and I changed a lot," Mary said. "It's the reason we are still married. We found more constructive ways to communicate, dealing with my anger and expressing myself in ways where Andy did not feel threatened.
"I mean, it wasn't easy for him to sit there and watch his wife losing her vision and going nuts."
Today, Andy says he continues to feel like a prisoner to Mary's disease. But he admires the way his wife confronts the burdens.
"Her ability to deal with it herself is probably one of the major factors that holds the marriage together," he said. "She makes it easy for me to not feel uncomfortable when I come home."
Back in 1989, a lot was happening as Mary approached a new chapter in her life. On Feb. 2 of that year she quit driving on the spot, breaking the news to Andy while shopping at Price Club.
"I was tremendously relieved. All of a sudden, this fear that I was going to kill somebody, that I was going to have a wreck, that I was going to cause some very, very serious harm, was just off my shoulders," Mary said.
By July of 1989, she applied to McGeorge School of Law. She knew what she wanted, she made a plan and figured out a way to do it. There wasn't anything she could not do. Already, she could visualize her success: opening a letter and learning she had passed the bar exam on her first try.
Law school would lead to a job in 1994 as a lawyer at Kronick Moskovitz Tiedemann & Girard in Sacramento. Mary was doing well until one day she went to a meeting and, looking back, made a fool of herself. Afterward, her supervising attorney, Tom Birmingham, wrote her a memo: "Mary, you were repeating questions that had just been asked, you were saying things that were irrelevant." Birmingham asked what he could do to help.
This really hurt. For all these years, Mary had gotten away with the hearing and vision problems simply by trying harder. Now she was finding out that willpower was not enough.
"I just wanted to give up," Mary said, thinking back to the memo. "My first thought was, "Oh God, what an idiot I must have looked like.' I mean, my client thought I was an idiot. My credibility was being called into question. I started to hyperventilate. I had to close my door, turn off the telephone, turn off my hearing aid and sit.
"I don't think I ever had such a hard test of pulling in every ounce of self-control I had not to just panic. By the time I was able to breathe again, I thought, Tom did me such a favor with that memo. What he could have done was say, "Mary, you can't cut it any more.' Instead, he came straight to me and said, "This is what I see happening. Is there something we can do about it?'"
Mary was down, but only for a moment. She picked up the phone and made an appointment with her audiologist. She would get a $2,500 contraption known as an FM system, essentially portable speakers linked to her hearing aid. With the help of technology, she would overcome yet another obstacle.
But there were more challenges ahead. Mary had so much more to do. She could bring hope and joy and humor to others. Or she could succumb to her increasingly debilitating illness.
On July 30, 1997, Mary was rushing to get to the meeting early so she could set up her FM system. When she stepped into the street and was clobbered by the train, it was an accident that she believes had to happen.
Doctors found something unusual after they did a magnetic resonance imaging procedure on her head.
It was a brain tumor. The symptoms, including balance problems, had simply been masked by her Usher Syndrome. If it were not for the train, Mary believes, the tumor would have killed her. If the tumor had continued to grow, it would have pressed on facial nerves and, later, the brain stem.
The weeks ahead would bring pain and deep despair. What did all this mean? Hadn't she suffered enough? How much more could she take? And how, after all this and all that awaited, could she find a reason to live?
When Patty Rominger got home from her camping trip there were several messages on her answering machine. It was bad news, she sensed, about Mary.
"Patty," Mary said when they finally hooked up on the phone, "you'd better sit down for this one."
Mary Dignan still found the humor in it all even as her eyes and her ears were betraying her, even as she thought about how a doctor was going to cut open her head and remove a 3-centimeter tumor.
Hadn't she, after all, just walked in front of a light-rail train? Months before that, hadn't she tumbled down the steps at the State Law Library, fleeing in a taxi and crying all the way home?
Facing up to the brain tumor was the most recent of many lifelong hardships for this woman with the rare genetic disease, Usher Syndrome. Yet, she continued to stride through life in her self-described "Dignan Dash," determined, funny, alive.
In a Sept. 12, 1997, letter to her friends, she gleefully explained how the space left in her head by the removal of the tumor would be plugged with fat -- yes, fat -- taken from her tummy.
"Unfortunately, this will only be the most minor of liposuctions, even though I have much more than an ounce of fat to spare. This will prevent leaks of cerebrospinal fluid after surgery and fill the space left by the tumor. ... Then the skull will be put back into place with titanium screws. This will leave Andy married to a screwy fathead."
Mary ended the four-page note with: "Thank you for all your good thoughts and prayers. It warms my heart to know you're pulling for me."
Two and a half years later, it is the "screwy fathead" remark her friends remember. Here was a woman whose life had been derailed for the umpteenth time and she's ... she's cracking jokes. Her friends were, indeed, pulling for her because they realized the future would hold so many more challenges. Usher Syndrome causes hearing loss at birth and eventually vision problems that often lead to blindness. There really is no escape and no cure.
Her hearing loss was already severe. Mary had always relied on reading lips to compensate, or, as she puts it, listening with her eyes. But now her field of vision was so small, so "tubed in," that to converse she first had to find someone's face, then scroll around with her eyes until she located the mouth. Only then could she read the lips.
Surgeons removed the brain tumor on Oct. 22, 1997. Mary recuperated at home, struggling to regain her balance. She returned to the law firm in March, but it was so hard to get through each day. Here she was in a profession that charges clients in six-minute increments and she was taking longer and longer to accomplish basic tasks. All the things she had to struggle to see, all she failed to hear, they were all adding up.
She was, she decided, not cutting it. She had put in 18-hour days going to law school at night while running a business in the daytime, but now Mary had to walk away after three years practicing law. To her friends, it seemed not only unfair but cruel, too much for one person. But no one had ever heard Mary say that.
Mary never wanted people to treat her differently or even think of her as disabled. None of her friends can recall her making excuses or asking for sympathy. She was part of the hearing and seeing culture; she just couldn't do either very well. She didn't want people to accommodate her. She would accommodate them.
Margaret McBride, her former legal secretary at Kronick Moscovitz Tiedemann & Girard, remembers that when Mary started at the firm in August of 1994 it took six months before she realized Mary had disabilities.
"I've never met anybody like her," McBride said recently. "She just leaves me speechless. She's very organized and very bright. She was always so well prepared that her disabilities were never an issue."
Longtime friend Judy Hoyt-Smith of Rockport, Mass., remembers meeting Mary at the airport in Boston one time. All the parking spots were taken, so Judy seized on a handicapped space, explaining to the nearby police officer that she was picking up a woman with disabilities. When Mary arrived, she was walking freely and looking perfectly normal. Judy pulled her aside as they approached the officer.
"Mary," she whispered. "You're supposed to be handicapped. Getbehind me, grab my elbow and look like you can't see where you're going, will ya?"
"I will not," Mary said, offended. "I'm not handicapped."
Mary eventually consented, but she wasn't happy about it.
Mary's pride, her enthusiasm and determination, have long inspired Judy, whose deceased first husband was Mary's cousin.
"Maybe it goes back to Day 1, when doctors thought she was mentally retarded," said Judy, trying to explain Mary's zeal. "Somehow, this itty-bitty kid had to prove that she was a smart cracker."
The removal of the tumor probably saved Mary's life, but it came with costs. The surgery damaged the acoustic nerve and wiped out hearing in her right ear. It complicated her vision because her face was now partially paralyzed, twisting her smile and making it nearly impossible to blink.
Her eyes were barely functioning with about a 5-degree field of vision, compared to the normal 160- to 180-degree field. Now they were now constantly drying out and aching. She couldn't go anywhere without eye drops.
How, her friends wondered, would she communicate if her world someday became both silent and dark?
"Thinking about that has brought me to tears and to my knees. It's pretty daunting," said Patty Rominger, 45, of Winters. "Mary's my best friend and I think about what it might take to be able to communicate with her at some point. Probably I'm going to have to learn that sign language where I sign into a person's hand."
A woman who had battled so hard to fit into the mainstream was now forced to retreat, maybe once and for all. Mary left the firm with a medical disability after two weeks back on the job.
She was a Type A personality with nowhere to go. But she still had plenty to offer. With the help of her computer, she added to her circle of friends.
Beginning in November of 1996, Mary became a leader in an Internet chat room called RPList -- RP for retinitis pigmentosa -- and would often write thorough notes about her experiences, some funny, some sad. Most were inspiring. The 40 to 50 active members are blind or going blind, and many are going deaf.
Many chat room participants sign in nearly every day, seeking out a place where others know what they are going through. Sighted people, Mary and several others say, cannot possibly understand the range of emotions and fears. In the chat room, Mary goes by the online nickname MagicD. She hopes to publish a collection of her online writings.
"Mary is terrific," said Janis Walker of Salisbury, N.C., who founded the chat room in 1996 after she was diagnosed with RP. "Mary is a mentor, especially for all the Usher children. Even with her disability, she went on and got her law degree and made a difference."
Walker said her struggle with sight loss is daunting. Yet it doesn't compare with what people with Usher Syndrome endure. "I don't know how they handle it. I cannot imagine losing all my sight and all my hearing," she said. "It is scary and you've got a lot of emotions to deal with."
The chat room created a spirited bond among the regulars. Last October, 10 members from as far away as Canada and North Carolina flew to Sacramento. Mary -- MagicD -- was turning 45. Recently, they chipped in $2,000 so a woman from rural Canada with a terminal illness could see the ocean just once before she died.
Often, the ideas expressed are anything but "a chat." In one lengthy post in 1996, Mary displayed a vulnerability before her RP and Usher buddies that she rarely showed in the regular world.
"Lately," she wrote, "I have been remembering what it is like to see full spectrum, and it is painful because my heart aches for that freedom of movement I used to have -- that miraculous, graceful and balanced mobility that only came back a little when I started using a cane, but enough to exhilarate."
Three years later, Mary qualified for a guide dog, April, so she could continue to venture out on her own. She caused a dustup at the Sacramento Zoo in November when an employee barred April from the grounds, citing animal safety concerns. Weeks later, the zoo reversed its long-standing policy on guide dogs, after Mary invoked the federal Americans with Disabilities Act. As her friends well knew, the zoo had tangled with the wrong person.
On March 29, 1999, MagicD responded to a bleak online post called "To be or not to be?" It was from someone in the RPList who wondered why he should even want to live.
Mary answered in a long letter. Her compassion, her insights, her thoughtfulness and her toughness all poured out. She talked about getting old, thinking far into the future when she might be 80. What might life be like? How would she manage?
"Just recently it occurred to me that my new vision of my life at 80 doesn't have much to do with seeing and hearing. It's all about being connected and communicating to people I want to be with. My new "vision' is mostly a FEELING, not a picture."
MagicD ended her posting as if the writer's life depended on it: "The depression and the fears I deal with are monumental, and they are no more monumental than the fears that you or any of the rest of us deal with on this list. But it is a life, a difficult one, maybe, but a life that I am learning to live now in the present. A cure would be glorious, but in the meantime, I think I'll live.
"I hope you will, too."
Nearly three years after the light-rail accident, Mary has not returned to work at the law firm, though she still drops in on occasion with a batch of homemade cookies. She broke her Seiko watch in the accident but took it in for repairs recently. Time had stood still long enough.
Mary knows she has sacrificed too much to stay away from practicing law. She figures she will never work again in a firm where she bills for hours. But she wants to be an advocate for the disabled, to fight for people facing all the problems she faced and overcame. A recent sunny day found Mary in her eclectic backyard garden in the Pocket area of Sacramento, planting flowers and herbs and thinking of nature's wonders in new ways. More than ever she catches herself taking off her gardening gloves to feel the texture of the leaves. And she is discovering smells she never knew existed, just as the 5-year-old Mary, equipped with her new hearing aid, learned that rain made a wonderful sound when it fell.
Her world could someday grow dark and silent, like a movie fading to black. Things are heading in that direction and that is terrifying, especially for a woman who lives to express her feelings the way Mary does.
But in the garden, as in the rest of Mary's world, there's more to life than sights and sounds.
"I don't know how many people ever notice," Mary said, "but cyclamen have a tremendous smell."
Date last modified 4/26/2000