Following the Street Lights:
Brian Hubbard's Story
In 1947, Brian Hubbard's mother suspected that something was not quite right with her son's hearing. As an infant, Brian did not turn quickly to greet his mother as she walked into the room and cheerily approached his crib. She mentioned her concerns to the family physician, who brushed aside her worry. A few years later, Brian was diagnosed with severe hearing loss.
His mom turned into a self-proclaimed speech therapist, practicing daily with Brian.
She recalls, "I still have fleeting memories of saying, 'No, Brian, no, no. Not wa-wa, it's wa-TER, wa-TER. Now say exactly that for me.'"
His mom would repeat words over and over, encouraging him to repeat a word until he mastered it.
At the age of six, Brian began wearing a hearing aid in his right ear. The hearing aid had a bulging mold with an attached wire which traveled down to a box harnessed under his clothes.
Brian, recalling his first experience with the hearing aid, said, "The hearing aid felt weird, and the world seemed suddenly ear-splittingly loud. The wind sounded like the tornado in the Wizard of Oz, and there were speech sounds that I never knew existed. That made it difficult for me to concentrate on what people were actually saying. It was one thing to listen with the aid in the safety of the testing environment, and it was quite another to cut me loose into the real world with the blasted thing."
One evening, when Brian was eight years old and his brother Mark was eleven, they walked home at night from a local store in their quiet, middle-class neighborhood of Lynn, Massachusetts . Brian was walking in the middle of the street, waiting for the next lamppost to light his path. By following the light of each lamppost, he was able to make his way around the neighborhood at night. He assumed that every child had difficulty seeing in the dark and navigated the neighborhood the same way.
Suddenly, his brother Mark hollered out at him to hurry up and get back on the sidewalk. Brian could hear him, but he was confused. He couldn't see Mark in the darkness. He couldn't see the sidewalk. While attempting to follow Mark's voice, he suddenly tripped over the curb. A curb that he couldn't see.
His parents took him to several doctors to try and determine the cause of his night blindness. They didn't obtain any real answers, and his father simply told Brian that as an adult, he just wouldn't be able to drive at night.
As a young child, Brian loved to play baseball. On the field, he discovered he was struggling to locate balls high in the air, but he could easily see line drives that were coming straight at him. It was puzzling to him. There were several instances where he would hear the ball fall to the ground with a thud, but he couldn't locate it. His inability to field balls brought him more time on the bench as he became older. Brian abandoned baseball for ice hockey at the age of thirteen.
Two years later, Brian was losing control of the puck during the game, and his parents realized that something was truly wrong.
After extensive testing, Brian's vision loss finally had a name: Retinitis Pigmentosa. Usher's Syndrome was the official diagnosis, explaining both the hearing loss and the problems with night and peripheral vision.
Looking back on that doctor's visit, Brian says, "Being hard of hearing and too young and inexperienced to take assertive steps and ask people to speak louder, I missed about half of what was explained to my parents. And I certainly knew that I did not want to ask them any questions to learn things that I did not need to learn. I was unwittingly learning at a young age that I could cope with the tougher things in life by taking advantage of my hearing loss, simply 'tuning out' by letting my mind wander. This increasingly rigid and brittle use of denial with this crafty, if unintentional, "tune-out" method was becoming a predominant way of coping, not only with the problems of my eyes, but with all of my problems in the world around me."
Brian recalled a cold and clammy feeling blanketing him in the doctor's office that day. "Maybe it was the strange sound of the name 'retinitis pigmentosa,'" said Brian. "It sounded like the name of a spooky bug, something like a tarantula."
After high school, Brian took off for college and dabbled in the idea of becoming a physician. He realized that he was neither ambitious nor interested enough to pursue medicine and decided on a double major of psychology and sociology. He completed his MSW at the Virginia Commonwealth University .
After abandoning hockey, Brian took up skiing, and an old girlfriend introduced him to the New England Disabled Sports program. Brian began to race, competing in a regional race and beating the best time by a full minute, an unheard of margin.
Brian says, "The following year, I did a race in the national races sponsored by the National Handicapped Sports and Recreational Association (NYHRSA) at Squaw Valley, CA, the same race course used by the Olympics in 1960. I competed very well for someone with relatively new racing experience, in the Downhill, Giant Slalom and Slalom. I also learned that the visually impaired category had their own domain, The United States Association of Blind Athletes (USABA), where I raced the following April at Alta Utah. At Squaw, I became the first visually impaired person to ski the treacherous KT-22, the 14th steepest slope in the world."
Brian was also very active in water skiing, competing in tournaments for people with low vision or blindness. He experimented with different ways to water-proof his hearing aids (Rion hearing aids, which were water resistant), and an FM system, so he could wear them on the water and communicate with the staff in the boat. After encasing his hearing aids in a rubberized sheath, he tied a fishing bobber on to the hearing aids, in case the hearing aids fell out during a wipeout, and covered the whole thing with a swimmer's cap.
When injuries began to sideline his racing career, he turned his focus to developing his counseling practice.
"When I first started out as a therapist, individual or groups, in 1973," said Brian, "I had enough residual vision and hearing to rely on lip reading to communicate verbally. My primary interest became family therapy, which was my specialty at VCU. I was able to pursue this right up until 1985 or so, and at that time I began to use a personalized FM system as an adjunct to my hearing aids. I coupled that with a 'conference mike,' but that was not very effective."
Brian continues, "When I went into private practice, I began concentrating more and more on individuals, primarily due to the demand and the lack of awareness of family dynamics in this area of Newport, RI ."
Audiologists were incredulous to discover that Brian had the ability to use the telephone with relative ease, despite the amount of hearing loss that showed on the audiogram. Brian was never afraid to explore new technology.
"My greatest asset," says Brian, "was the ability to explore what the resources were, not being afraid to ask questions and, quite simply, being a pain in the butt to all those busy professionals out there. It was through dogged persistence, and a refusal to be intimidated by any of those busy docs with their fancy degrees and titles, that I would get answers."
By 1995, Brian's vision had deteriorated to the point where it was nearly gone. The FM system provided access to communication, but he greatly missed the ability to supplement communication via speechreading. In 1998, Brian turned to self-employment, creating Counseling for Independent Living, the nation's first program to provide community-based psychotherapy to people with disabilities, funded through the U.S. Department of Education.
Brian explored the option of a cochlear implant and became the first person with total vision loss to obtain bilateral implants. He received his first Med-El implant in 2003 and the company offered support and guidance as he learned to navigate the various settings and controls on the implant. Brian quickly adapted to the new sounds and was able to discriminate speech well. The experience was overwhelmingly positive. So positive, in fact, that he decided a second implant would be icing on the cake. So a year later, he obtained his second implant.
For a while, Brian felt as if he made a grave mistake. The initial turn-on of the implant wasn't as euphoric as the first one. It was actually disastrous-he was left with an echo between the two implants. The sound was not synchronized. At that point, Brian sank into a deep depression, regretting his decision to get the second implant. He developed terrible headaches that were difficult to deal with and contributed to his regret.
After a grueling year of therapy with his second implant and constant mappings, Brian began to realize that the implants were getting better and the headaches were less frequent.
Even with bilateral implants, social situations and noisy environments continued to be a challenge, but accommodations were made to ensure that communication could happen. Seating arrangements were changed, smaller groups were formed, and common courtesy applied to facilitate conversation.
Brian states, "The bottom line is to believe in the power of love. If you do this, you will discover not only who your real friends are, but what they will do to find ways to improve channels that will indeed facilitate communication."
Brian knows this personally. He has been with his partner, Sharron Hubbard, who took his name even though they are not married, for more than ten years.
After his second implant, Brian began to focus on developing a unique type of therapy provided through the Internet and phone: Empowerment Therapy (see sidebar). To navigate the internet and printed material, Brian uses a screen reader, which converts text into audio material. Empowerment Therapy focuses on empowering persons to handle life's challenges. Brian specializes in grief work, using over thirty years of experience as a psychotherapist to focus on dealing with loss.
"Perhaps the most important thing I've learned is that everything in life, no matter what it is, has advantages and its positive side," says Brian. "Borrowing from my Empowerment Therapy, it makes much more sense to focus on the advantages and positives rather than disadvantages and negatives, to focus on solutions rather than problems, on possibilities rather than impossibilities and on opportunities/options rather than limits."
When it comes to raising kids who are deaf, hard of hearing or deaf-blind, Brian has something to share: "The best parent is the one who encourages growth, self-discovery and self-love based on this: a respect for ones true uniqueness and 'different-ness.' To cultivate self-esteem is the foundation for self-advocacy. I would encourage parents to allow their children the proper balance of healthy guidance and protection (this is easy) while simultaneously allowing for the margin of error (this is hard)."
Brian believes that self-advocacy is the one critical skill that separates winners from losers.
"There is absolutely no way to get around this," says Brian, "and the critical key to self-advocacy, in combination with skills, information and intelligence, is self-esteem and a strong self concept, a concept not based on past accomplishments, but far more importantly, the ability to identify and solve problems, alone or in constructive collaboration with others."
Still, if past accomplishments are any measure, then Brian Hubbard is sitting on top of the highest mountain and continuing to climb.
Brian Hubbard divides his time between his practice of Empowerment Therapy (www.empowermenttherapy.com) and speaking engagements. He is currently at work on his memoir: Sharing the Light. Brian can be reached at: firstname.lastname@example.org. For more information on Usher's Syndrome, see http://www.nei.nih.gov/health/ushers/index.asp
Exploring Empowerment Therapy:
While interviewing Brian for this story, I was having a major meltdown in my own life. My life was chaotic and I was making some mistakes that I wasn't happy about. So I challenged Brian to some free therapy so I could understand firsthand what is involved with Empowerment Therapy.
Brian sent me a questionnaire to fill out that dealt with grief and loss so I could experience Empowerment Therapy in relation to those issues. I submitted a summary of what I was dealing with at the current time. Brian identified the issues as a "Problem Statement." We went on to explore changes that could be made, identified a commitment to those changes and explored a "miracle answer" to the identified issues.
In the end, I discovered I was an extremely frazzled mother who was completely overwhelmed with several issues and I needed to make some decisions be able to see some changes. I prioritized some decisions, made a few changes and the stress eased up. Brian stayed in touch and provided feedback, helping me to stay on track.
ed. note - Karen is the chairperson of the Illinois Families for Hands & Voices chapter and seves on the H&V Board of Directors.