Tom Westman knows something of working through difficult situations. In his 20-year career as a New York City firefighter, he faced tragic situations head on, including responding to the terrorist attack on the World Trade Center. In a completely different kind of predicament, in May 2005, Westman outwitted, outplayed and outlasted 19 other contestants to win CBS-reality television show “Survivor: Palau.” But his made-for-TV survival pales in comparison to the challenge he and his wife, Bernadette, faced nine years ago when Westman’s oldest child, Meghan, contacted meningitis.
Meghan was an 18-month-old blonde, blue-eyed girl full of life and energy. But illness turned what should have been a joyful time for this young family into the hardest time in their lives. “We were living this charmed life,” Westman says. “When Meghan became ill with meningitis, it hit us like a catastrophe. We wondered if she would live. My wife was pregnant with our son, Declan, at the time. We worried for seven days, and then, all was fine – except Meghan was deaf.”
Westman recalls watching Meghan’s auditory brainstem response test. “We saw no response to sound. When the audiologist told us, ‘She is profoundly deaf,’ we already knew, because we saw the flat line. It was the worst day. In reality, a person doesn’t have a concept of what deafness is until you meet it.”
Like many parents confronting deafness, the couple took turns grieving. The shock that their baby girl was seriously ill took its toll on both of them. Then to learn, once she was well, that she was deaf as a result of her illness, was often more than either could bear. “One of us would be in despair, while the other was trying to uplift. We supported each other … we didn’t have the answers,” Westman remembers. “I coped by becoming an information gatherer. Information was the tool. I knew we had a lot of learning to do in a short amount of time.
“At the time, we didn’t know we were walking into a 600-year-old argument about how to handle deafness,” Westman says. The first school they visited was a school that used American Sign Language where they were introduced to Deaf Culture. Next they went to a total communication school. They finally settled on enrolling Meghan in a county program, B.O.C.E.S – Board of Cooperative Educational Services in Nassau County. Westman recalls talking with children at this school only to find out later that they were profoundly deaf, though they all had been speaking clearly: “We talked to this one girl in particular. She was quite engaging and asked about our baby. Then she said, ‘Oh, that’s what happened to me!’ We started crying. I said to the teacher, ‘She’s not really deaf?’ and the teacher confirmed she had been profoundly deaf since birth.”
Westman and Bernadette decided on a cochlear implant for Meghan. She received it while still a toddler and she has become a success story and a role model for other children and their parents. “She is our hero. Things seem to come so easy for other children, but Meg gives all the effort. She realizes you don’t take things for granted and she takes care of everything herself now – putting her device in dry storage and all the day-to-day work,” Westman says.
Westman says his experience on the CBS reality television show “Survivor: Palau” was minor compared to what Meghan has been through. He knows that 39 days does not make a true survivor: “It was an amusing moment in time, but it wasn’t really what life is about. What Meg has survived is real life.”
The Westmans, now advocates through the Alexander Graham Bell Association for the Deaf and Hard of Hearing, keep their expectations high for Meghan: “I don’t want the words ‘I can’t’ to be in her vocabulary. We have worked so hard at some of the basic things, like accessibility and doing well in school. Now it’s all about her believing in herself. … We address Meg’s deafness directly and talk openly about it. She has never said ‘I wish this didn’t happen.’ She takes pride in her abilities.
“Someone told us, work real hard now and take it easy later. Or you can take it easy now and work really hard later. We chose to work really hard early on,” Westman says.
Working through the grief of hearing loss resulted in a stronger marriage too. Westman says that he and Bernadette don’t take anything for granted anymore. “When things are good, it’s that much more precious now.”
Elizabeth Thompson is a freelance writer who lives with her husband in Seattle. She lost her hearing gradually since childhood and was totally deaf at 50. Four years ago she received the same implant as Meghan, the Nucleus 24 contour, and loves having sound back in her life – especially her three young grandchildren.
