玉麗的故事
The Story of Yui-li
May, 2007
Driving his Camry, Clement glances at Yui-li on the passenger seat. She sits quietly looking straight ahead. After 40 years of marriage, he can see from the side of her face and through her eyes what is in her mind. Today, she will experience one of the most important events of her life in the past 30 years. She has expectations and is both excited and anxious. Yet, she looks extraordinarily calm. He extends his right hand and lightly squeezes her hand. She gently squeezes back silently.
She is a software programmer at the US Veterans Health Administration. She looks 10 years younger than her age, and her expression does not reveal anything unusual. No one would realize that she has been profoundly hearing impaired for the last 30 years.
Today, they are going to an ear clinic at a medical center in Dallas. She will activate the processor for her cochlear implant. She will be hearing sounds from the outside world for the first time in 30 years!
A cochlear implant is a device for individuals with severe hearing impairment, particularly for those with degenerative changes of the hair cells in the cochlea, which is the receptor for sound stimuli. The implant will make the recipients able to hear sounds. This procedure started to develop in 1978 and thus far has made significant progress because of the advances in computer-related hardware designs. The implant procedure has been popularized in recent years, and more than 100,000 hearing impaired have received the implant worldwide, 22,000 in the US alone.
There are two steps in the cochlear implant. The first is to surgically pass a 1 mm diameter bundle of wires (22 electrodes) through the mastoid bone behind the ear to insert into the cochlea. The electrodes make contact with 22 points inside the cochlear surface, spreading from the high-pitch to the low-pitch sound receptor sites. The second step is the rehabilitation that starts after the wound heals 3 weeks later. It involves training of the implant recipient to the electrical signal transmitted by the sound processor attached to the ear. After adjusting the processor and training of the implant user over the following weeks to months, the hearing impaired will be able to communicate with others face to face.
She had the electrodes implanted 3 weeks ago. The post-operative course has been smooth. Today, she will start the second step.
Looking back 45 years earlier, she graduated from the Nursing Department of National Taiwan University, worked as a public health nurse, as the chief of an experimental nursery for the Biochemistry Department, and then came to the US in 1965. She married Clement whom she was in love with for a few years. At that time, she already noted a high-pitched ringing in the ear (tinnitus). Before the marriage, they had visited two otologists at National Taiwan University Hospital and knew that she might have “sensorineural hearing loss”. After coming to the US, she was again seen by an otologist at Columbia University. Judging from the audiogram, they were told that she had the degenerative disease.
Sensorineural hearing loss is a degenerative condition of the hair cells in the cochlea. The disease is of unknown cause and affects both ears, starting with high-pitched tinnitus, and will progress at any age, at varying speed, to severe deafness. There was no therapy at that time.
In 1978, she started to note worsening of her hearing. It began with a muffled sensation of both ears. Then, her hearing went away almost completely within the next 2 months.
During these 2 months, she would go to the living room and try to listen to high or low tones by playing the piano keys. She knew the bad thing was finally happening. However, she did not show sorrow or panic. She quietly told Clement that she had lost her hearing almost completely.
Losing her hearing, she did not isolate herself from the outside world, nor become dependent of others. She went to the Hearing Clinic of Northwestern University in Chicago to learn lip-reading. Further, over the next 2 years, she applied to be a special student at the School of Engineering of Northwestern University. She accumulated credits in calculus and computer languages with a GPA of 3.75. Together with the college credits from National Taiwan University, she entered the post-graduate course in computer science. In 1984, she was awarded a Master’s Degree in computer science from Northwestern University. [1, 2]
After obtaining the degree, she applied for work at various places and was accepted by the US VA Information Service as a statistical programmer at the cooperative study group. Since then she has been working at the same VA Information Service for 23 years, and has been awarded more than 10 times, with the sum of cash award nearing $14,000 [3]. Her work continued to be productive over these years. She read all the new technical reports to keep up her technical know-how, and was told by her superior that she could work as long as she wants, till any age.
Dr. Julianni Souchek who accepted her job application at the time of interview wrote to her that if a hearing impaired person could earn a M.S. degree in computer science from Northwestern University, she might have some unusual quality or talent. Yui-li didn’t think she was anything special, only that she was determined to never succumb to any adverse situations.
”The dense growth of bamboo does not prevent water from flowing through, the height of mountains does not hinder the clouds from flying over.”
One year after her work at the cooperative center, she was awarded over $700 cash for her outstanding performance. Within 5 years, she published 2 papers.[4, 5]
When Clement learned that Yui-li’s hearing was going downhill rapidly, noticing her checking her own hearing by playing with the piano keys by herself in a quiet living room, he felt extremely distressed and helpless. From then on, she would be unable to hear the sound of the outside world, comprehend the conversations of others, understand daily news from the TV, nor enjoy movies or music. His heart was unbearably heavy.
He wondered how a hearing impaired mother would affect the children’s education. He was further concerned as to how she would maintain her contact with the outside world and maintain interactions with others.
At that time, their two sons, Felix and Benedict, were 10 and 8 years old, respectively. He told them that their mother would not be able to hear their voices from now on, and might not be able to take care of their schoolwork and daily living as attentively as before. But they had to listen to her and study hard. The children hugged their mother and kept crying. He felt as if a knife was stabbing his heart.
Now the children have grown up and have their own families. Both have been very helpful and protective of their mother. Clement and Yui-li have 5 grand-children all together. Yui-li feels happy because she is living close to the elder son and is able to see his 3 children everyday. She and Clement will be living close to their second son and will be with his 2 children in the near future.
Besides Yui-li’s own effort, she was also blessed by the rapid development of technology. Television news programs started to have captions for the hearing impaired in the same year. The captioning of TV programs now covers more than 90% of all programs. These services enable her to understand daily news from television and enjoy dialogue in movies. New technologies in communication also allowed them to keep in touch immediately through wireless messages to her message receiver that she carries all the time on her waist.
Her choice of computer programming as her work is particularly suited for the hearing impaired. She was able to exchange opinions with her colleagues through the e- mail; verbal contact was not necessary. She and her colleagues are allowed to arrange 40% of their working hours at home at their convenience.
In the meantime, Clement used simple hand signals, spoke clearly for her to lip-read, and wrote whenever there were important or complicated messages. When they were with other groups of people, he became a listener, spoke much less, and spent more time writing for her, explaining what was being discussed. She was unable to answer the telephone. Therefore, they designed a set of codes between them and were able to transmit messages with pagers, which was the only wireless equipment available then.
They did not learn sign language because those using signs tend to live in a different culture from others, and the languages vary from one country to another. They also stopped going out to watch movies, to concerts, or any other activities that required sound perception. For thirty years, he had not been listening to music, because he did not have any interest in enjoying it alone.
Since 1972, Clement had been working at the infectious diseases section of Northwestern University Medical School in Chicago. In 1983 and 1989, he had opportunities to go back to Taiwan to attend the National Development Seminars, and realized that there was a need for his kind of specialist in Taiwan. By then, he knew Yui-li could be totally independent and had the respect of her colleagues, receiving performance and service awards. With Yui-li’s agreement, he decided to go back to Taiwan alone to work for his homeland. He left for Taiwan in 1990. He was able to be close to his aging father and in the meantime served in different capacities for the medical community there. Eighteen years had passed; he felt homesick even though the hospital he worked at allowed him to take time off as frequently as he wished. He wanted to go home to keep the company of his wife and grandchildren.
With increasing age, he felt the need to do whatever he always wanted to do, yet had not started. He and Yui-li began to take tours whenever she could find time. He read the diaries he kept for years. He read the daily FAX messages between them before e-mail became available. He reminisced about their lives, recalling how difficult it was for her to acquire her Master’s Degree in computer science and work at her current workplace.
Unusual effort was needed for her to keep up with her class. She had to tell the teacher that she was hearing impaired and asked him to write the key points on the blackboard. Then sitting in the front row with her portable hearing aid available then, she would try to understand what was being lectured.
However, her hearing impairment was more severe with the high-pitched sounds required in the pronunciation of consonants (i.e.: t, d, z, ch, j, g, s, l, m, n, p, g, etc.). For identification of a word, consonants are far more important than vowels (i.e.: a, i, u, e, o.). Therefore, some sounds were audible, but she could not understand the meaning of it. She had to depend on textbooks and occasionally had to borrow notes from classmates. Despite these difficulties, she eventually acquired the Master’s degrees in computer science.
Her work colleagues treated her nicely and frequently wrote down new developments for her. However, she still could not hear their conversations. She could only understand the work assigned to her. During conferences, the persons sitting next to her would write down the content of the discussions for her.
The US government, being the foremost advocate of the rights of the handicapped, was her most important support.
In 1988 when she was due to be promoted, another less qualified worker was chosen over her. She sued her superior, the assistant chief of the section, for discrimination. The Department of Veteran’s Affair sent an official to investigate the charges. Nine months later, her superior was found to have discriminated against her. She was instated to the appropriate position, given the salary retroactively, and was transferred to a position more suited for her, the Veterans Health Information Systems and Technology Architecture.
This incident gave Yui-li and Clement great confidence in the US government’s stance in the protection of the minorities and the handicapped. This episode also demonstrated her courage and her fighting spirit.
Since the mid 1980's, the Department of Veterans Affairs (VA) has been developing software to support the computerization of Nursing Service. The software is integrated with a hospital's clinical and management information system known as the Decentralized Hospital Computer Program which operates in 167 hospitals. Yui-li’s transfer to the Veteran’s Health Administration as an Information Technology Specialist/Developer provided her a better platform to demonstrate her ability. From 1990 till 2002, she was awarded almost every year [3].
She actively participated in the mental health evaluation project, designed the graphic user interface, and further produced software for nursing records.[4, 5] In 2000, she was awarded a Department of Veteran’s Affairs “Special Contribution Award” for “a unique contribution to the mission of the department”, for her “independent effort in the development of the GUI front end application”. [6]
In 2006, VHA won one of the most prestigious awards in the government, the “Innovations in American Government Award”, for their accomplishments in VHA’s electronic health record system, VistA.” The award was also reported in Time magazine.[7] She was very happy to be part of that effort. This year, at age 68, she was sent to work for the Office of Information and Technology.
Clement has been very supportive of her pursuit of her Master’s Degree and for the application for work. However he was not certain that she could accomplish these goals with her severe handicap. He encouraged her to do her best and be happy with whatever outcome she might get. Fortunately, all came out well.
They had inquired about the cochlear implant more than 10 years ago. However, the procedure seemed to be in the experimental stage, and they did not pursue it further. During a class reunion cruise last October, one of Clement’s classmates informed them that one of their friends had the implant done and was very happy about it. They started searching various websites, listened to lectures, and finally found an otology clinic in Dallas that is well known for their services.
The otologist, Dr. Robert Peters, has operated on more than 400 cases and has a team consisting of audiologists, audiovisual therapists and psychologists, etc, to carry out the post-operative rehabilitative work.
Out of this doctor’s 400 cases, there have been only two who required having the implant removed: one as the result of trauma and the other, in a hemodialysis patient, due to infection one year after the implant. These are excellent and comforting results for them.
The post-operative support by the audiologist and the therapist is the more important part of the cochlear implant. A normal cochlea has about 16,000 hair cells that receive sounds of different frequencies. After analysis by brain cells they become voices. In a normal individual, sounds are also received from two ears, and that makes one able to locate where the sound is from.
The cochlear implant has only 22 electrodes for different sound wavelengths. And it is usually done only on one side. Therefore when the processor is activated, the implant recipient hears noise from everywhere all at the same time. It will require repeated adjustment of the processor by the audiologist and training by the therapist to be able to “hear” the human voice, at least face-to-face, with the help of some lip-reading. The processor can be programmed for conversation while driving as well.
How can sound frequencies from 22 electrodes replace the function of 16,000 hair cells? There is a mechanism in the brain called “neuroplasticity”. When the brain is damaged, there is regeneration and re-organization of the synaptic contact between brain cells in an attempt to make up for the defective function caused by the damage.
For instance, if someone uses convex lenses to see things, he would see everything upside down. However, after using it continuously for a few weeks, everything he sees will be upright again. When someone loses his right arm, his left arm will gradually able to work like his right arm. These are all due to the rescue function of neuroplasticity.
Since Yui-Li was hearing normally till 37 years of age, rehabilitation will be easier. Her use of hearing aids on both sides for the past 30 years, even though they were of little help, is supposed to facilitate the mechanism of neuroplasticity to operate more efficiently. Therefore she should be able to adjust to the cochlear implant in a few weeks to a couple of months.
Before the surgery, there were several evaluations arranged including: magnetic resonance imaging (MRI), interviews with audiologist, evaluations by psychologist and audiotherapist, a repeat audiology hearing test, videonystagmography, and the confirmation of insurance coverage.
The cost of the cochlear implant is expensive. Including equipment, surgery, pre-surgical evaluations, and rehabilitation, the total cost could be $50,000 to $100,000. The cost is the major reason that cochlear implants are not more popular among the estimated 400,000 to 700,000 profoundly hearing impaired in the US.
The surgery was a one-day outpatient procedure. It started at 7 AM. Within 2 hours, Dr. Peters came out with pictures of the operative fields. He reported to them that the surgery went smoothly, and the test of each electrode prior to the end of the procedure showed that they were all functioning well. They felt relief. Following that, smooth healing of the surgical wounds was all they prayed for.
When Yui-li was in the recovery room, Clement was able to stay by the bedside. She was a little dizzy but not nauseated. She was able to leave for home in 5 hours. She noted some blood in the mouth. She guessed that could be from the blood from the ear that drained into the mouth through the Eustachian tube. She also noted that the taste of food had diminished. When asked about it at the follow-up clinic visit, the doctor explained that there is a branch of the facial nerve, the chorda tympani, that innervates the front 2/3 of the tongue and two salivary glands passing very close to the cochlea. Some injury to the area could cause the chorda tympani to malfunction. It should recover in months.
Watching Yui-li lying in bed quietly with eyes closed, he knew she must be in pain. She did not complain. Her stoic personality was related to her family background. She was born to a large family with 12 siblings. Therefore, she never asked her family for help even for serious problems such as her illnesses. She would always try to face her own difficulties by herself.
Today is the day when the processor of the cochlear implant will be activated. Clement and Yui-li are bringing a case of parts for implant, suppressing complex emotions, sitting quietly and driving towards the hospital. Houses and cars passing by like vague shadows, like hardships they endured over the thirty years. Over their life span, they have been charged by an extreme difficulty, yet they fought back for their continued happiness. They were blessed with new technologies and with the help of a few others. Soon they will be able to talk face to face as they used to 30 years ago.
They might talk endlessly. Or they may face each other speechless.
Footnotes：
1. Hsu Y-L: "The Effect of Transmission Times on Scheduling Multiple Factoring Algorithms". Thesis. 1984
2. Van Ness JE, Hsu Y-L: "Multiple Factoring for the Parallel Solution
of Power System Problems". Eighth Power System Computation Conference, Helsinki, Finland. 1984
3. Awards:
5/16/90 Performance Award
5/28/91 Performance Award
8/20/92 Performance Award
9/12/92 Service Award
7/2/93 Performance Award
9/13/93 Service Award
6/28/94 Performance Award
4/19/95 Service Award
6/13/95 Performance Award
7/13/98 Service Award
3/8/99 Service Award
3/8/99 Service Award
11/21/01 Individual Cash Award
8/21/02 Individual Cash Award
4. Hsu YL, Reda DR: "A microcomputer-based clinical trial database incorporated with 'audit trail' for correction process". Computer. Methods and Programs in Biomedicine, 30 (1989) 239-248
5. Phair JP, Hsu CCS, Hsu YL: “Ageing and infection”. 1988. Research And the ageing population. Wiley, Chichester (Ciba Foundation Symposium 134) p 143-154)
6. “Innovations in American Government Award”, for the accomplishments in VHA’s electronic health record system, VistA.”. July, 2006
7. Time. August 27, 2006： “How VA Hospitals Became The Best”
