At the end of June last year (2016) I was a recipient of a Cochlear Implant.

All my life I abhorred loud music (concerts), blaring radio whether in the car or at home and TV that could be heard outside or far away.   So I wondered why my hearing loss presented itself during my working days in 1998.   Subsequently and after discussions with various audiologists it was ascertained that my job as Personal Assistant to a CEO of an importing company and his constant use of a Dictaphone which often caused me to switch to full volume, was probably the cause.

So I proceeded on a long journey of being fitted with hearing aids.  Well known brands (Perseo, Phonak, Siemens, Oticon and finally Resound) and a costly exercise.

Family and friends commented that I was missing so much conversation; I discouraged people phoning me as I could not understand them; stopped going to the cinema; and my love of theatre also suffered.

Two separate audiologists suggested I consider Cochlear Implants as they could do no more.   I was 83 years old and after having had eight major surgeries in my lifetime I always said “I would never willingly go under the knife”.    However, my son Michael said he would accompany me to investigate whether I really was a candidate.

So Michael and I went to the War Memorial Hospital on Friday 6th May 2016 to decide my fate.  I am very negative, Colleen Psarros was informative, patient and most helpful with any queries we had.  Michael was able to understand the engineering/electronic side of the implant.    I surprised myself when I did a complete reversal from negative 95% when we arrived and left feeling positive at 95% and keen to go ahead with the project.

The first available appointment for Dr Jonathan Kong was made for 15th June 2016.   He had received my test results from Colleen Psarros so followed an intense 1.1/4 hours of discussion which Michael, fortunately, was again able to understand the technicalities.   I then and there decided to go ahead with the procedure and as I already had a 3-week holiday booked for the end of August, Dr Kong fitted into the schedule by advising he could do it on 30thJune at North Shore Private Hospital.   There is a six week timeframe after the operation – first week to ensure no infection; 2nd week for Switch-On then four consecutive weeks with Colleen for adjustments.  And one is unable to fly during that period.  

I have never experienced such pre-operation testing as this.  On 21st June the MRI was daunting as my experience having one 8 years ago for the Memory & Ageing Study was not pleasant however with a prescribed valium half an hour before and new equipment it was not as claustrophobic as previously.  There was a mirror whereby I could see the operator behind glass (the other time it was like I had my head in a bucket); it took 12 minutes (so I counted 720 elephants!!!) and all was well.    The ‘elephants’ came from an Occupational Therapist who said saying elephant between  counting converts quite accurately to seconds.

Then to RPA Hospital for Balance Test on 27th June.  This was on a freezing cold day and in an unfamiliar area for parking – but I made it.    I always thought balance testing was to do with not falling and as I am a wobbly with my lower limbs I did not expect a good result.  But, it was very different.  I wore goggles while my eyes remained looking ahead and they turned my head in all directions and they had very up-to-date computer equipment.   I mentioned how, for some time, I have experienced giddiness when looking up to reach for something on a top shelf so Luke suggested I mention this to the doctor who I saw a couple of hours later, Dr Miriam Welgampola (a very attractive Sri Lankan).    After perusing my Balance Test results and was happy with those, she said she may be able to fix the giddiness (mentioned the word vertigo) then and there.   She had me in a couple of positions holding my head for 30 seconds each time then told me to lie on my right side with two pillows for the next week.   As the operation was looming I knew I would have no alternative but to lie on my right side. 

Another new territory to find was on 29th June for more tests at Royal North Shore Hospital.  An ECG + Xray of the chest + Blood Test + talk to their GP about the next day’s events!!!.     A couple of hours overall.   Everyone and everything was so thorough.  As I was leaving the hospital late afternoon they were able to tell me my time for arrival the next day – it was 9.45am.

The day has come Thursday 30th June 2016.   Michael and Fiona collect me from home and at the hospital took me through to the “point of no return”.  Usual procedures of hospital gown, stockings + other leggings, and wheeled into theatre by a very smiling, bright man who “has a mother your age and her best friend is Beverley” – he lightened the trip.  Sarah Green the anaesthetist came, then Dr Kong to mark the correct ear and away I went for almost three hours. 

Michael and Fiona were waiting in my room when I returned which was most comforting for me.   They stayed until after 6 pm when I kept drifting off.  The rest of the night was half awake/half asleep with pain killers and being able to walk to the toilet (with assistance of course) but no dizziness – hooray.   Michael returned around 7 am and stayed until I was discharged at 10 am (24 hours after arrival, wow!!!).    Dr Kong called in to check on me around 6 pm then again in the morning to give me approval to leave hospital.   He is a charming and very nice young man.

The facilities and staff at North Shore Private are first class.  Could not fault them. 

Before leaving I had one final xray of the head which shows the implant and given antibiotics for ten days – Cephalexin 500mg capsules.

Now with my first anniversary coming up soon I have to say I am very happy that I had this done.   However, there are many people in the world who do not understand the problems with hearing loss.  Actually the younger generation are going to have major issues due to the headphones they constantly use now.  

One goes to the cinema and the young attendants have no idea where there may be a telecoil loop or where the best seats are to receive this signal.   Dining in restaurants is horrendous as most places have hard floors and ceilings, no table cloths or other means to soften the bedlam of everyone talking.   Attending meetings and seminars difficult as it is not easy, or practical, to ask the speaker to wear a Minimic – and then there is the chance of losing it by way of the speaker leaving not aware he still has the Minimic attached.    Ambient noise is a major problem and I consider more help, and education to the world at large, should be available.   It is not just we older people who need the help.  There are those deaf at birth, loss of hearing due to an influenza infection and many more such cases where the age group can be very young.   And a long life ahead of them to cope.

So for Cochlear recipients there are accessories to assist but I, personally, have not found them any help but put it down to my inadequacy in the learning curve.

Bev Toohey

Sept 2016 North Harbour News

Aaron and Isla Gilby have colourful and powerful devices attached to their heads.
They come in a variety of different patterned covers and have a special waterproof case when they go swimming. Without them, the pair cannot hear or process sound. Aaron, 9, and Isla, 7, are profoundly deaf and have bilateral cochlear implants. It took about five years for the siblings, who live in Greenhithe on Auckland's North Shore, to be able to hear and speak clearly. "With cochlear implants you don't just put it on and hear. It's quite a journey to catch up with your peers," mother Shona Gilby says.

Siblings

Now, they both enjoy sports, music, and playing with their friends at school with only minor setbacks.

"When people speak really quietly it's hard to hear them if there's lots of racket in the background," Aaron says. "Sometimes when I'm running in netball I can't hear the umpire," Isla says. Aaron and Isla, who are the middle two siblings of four, were born with Connexin 26, a recessive gene which causes hearing loss. They were both diagnosed as newborns and received cochlear implants through The Hearing House in Greenlane, a charity which works with children with hearing loss. At five- months-old, Isla was the youngest child to receive cochlear implants through the programme. The pair went through extensive auditory and verbal therapy to get them to an age-appropriate hearing level by the time they turned five and started primary school. "It was huge, we have no family history of deafness. It was a surprise and came out of nowhere," Gilby says. "We didn't know anything about deafness and didn't know what to expect and what the best thing would be for us." The Ministry of Health funds two cochlear implants for children under 19 with profound hearing loss, and one device for adults with profound hearing loss in both ears. 

Sept 2016 today.com

Rebecca Alexander, a 37-year-old psychotherapist from New York City, was born with Usher Syndrome type III, a rare genetic mutation that has slowly robbed her of both sight and hearing. She was diagnosed at age 13, but hasn’t let the condition slow her down. A fierce competitor, she climbed Mount Kilimanjaro and swam the icy San Francisco Bay from Alcatraz last year. Her 2014 book, “Not Fade Away: A Memoir of Senses Lost and Found,” has been optioned for a movie.
 
Rebecca

What time do you get up?
I usually set my alarm and get up around 7. But I have a mini golden doodle dog named Olive who licks my face and snuggles with me, so in fact, it’s more like 7:40. I call her “Monkey.”

Do you have any rituals that help you navigate your day?
I am deaf when I get up — I don’t have my hearing aid or cochlear implant. It’s the last thing I do, and I prefer it that way. There’s always a siren or a bus or construction noise in the city. But my apartment is pretty close to the subway, and when I lie in bed I can feel it rumble beneath me.

Are you a morning person?
I guess I am. I get up with Monkey and feed her. I put my contacts in, then throw on my gym clothes and sneakers and go for a morning walk. On a good day, I go to Central Park before 9 with Monkey for the “off-leash” hours. I take a big red rubber ball — it’s big on purpose, so when I throw it, I can easily find it. She stays close, but sometimes I look around and can’t find her. Then I realize she’s right at my feet.

Rebecca

How do you adapt to the hearing and sight loss?
My left ear has a hearing aid and my right has a cochlear implant. I have donut vision, so I see inside and outside of the donut. I know where most things are by touch. My closets are all color coordinated to make it easier for me to find what I am looking for. I am a Lululemon ambassador, so my closet is a shrine to them.

What are the toughest tasks?
If anything, trying to find my shoes. But I really don’t worry as much about my condition. I am 37 and I was told I would be completely blind at 30. I have 10 degrees of vision and a normal person has 180. I am just happy to be able to see the morning. One thing about Usher’s syndrome, is it makes you incredibly humble and forces you to be very present. People think way too far ahead into the future, as opposed to where they are right now.

Can you cook your own breakfast?
I usually grab a protein bar and go to take or teach a fitness class. I go religiously at 9 a.m. I could cook, I am just lazy. After I work out, I make myself almond butter on toast and coffee. I live for coffee. I love it.

What’s your workout like?
I teach spin classes and usually do high-intensity training. One of the reasons I do the HIT classes is because it does not require running all over the place. You can do every exercise and all the aerobic and strength training by staying in one place. For someone who is vision impaired, you don’t run into anything. I also have a coach.

What kind of prep do you do for your psychotherapy work?
I have to do a lot of reading for my dialectical behavioral therapy course after my HIT class. I have an iPad that enlarges the text. I also have an app, BookShare, which was created by an ophthalmologist. You can have access to every book imaginable. It inverts colors when you read or you can scroll like a teleprompter.

How do you get to work on the busy city streets?
I go to work around 11. My apartment is close to my office and I use a cane when I need it, mostly at night. My day vision is quite strong.

It sounds like you embrace each day with purpose and joy.
One thing I know for sure about myself, is that I feel a lot better when I am productive. So I make sure every day, I wake up and know what my priorities are, or set a goal or two. 

 

 

 

Oct 2016 CJN Canadian Jewish News

When someone refers to a persons life as a soap opera, they are usually speaking in metaphorical terms. But in Beverly Bidermans case, her life has literally become an opera. Her experience of being deaf and learning to hear with a cochlear implant, an electronic hearing device, was the inspiration for a new opera TMIE, standing on the threshold of the outside world, which was created by Portuguese composer, Carlos Alberto Augusto, debuted in Lisbon last month. Biderman, 70, was invited to join Augusto on stage when she attended the premier on Sept. 8. It felt wonderful, she said. Carlos even used a passage from my book as a libretto. Augusto created TMIE, after reading Bidermans book, Wired for Sound: A Journey Into Hearing (Trifolium Books, 1998; the updated edition was reissued by Fitzhenry & Whiteside in 2016), which chronicles Bidermans experience of being deaf and the ensuing challenges of learning to hear after she had a cochlear implant at age 46. It is not like a switch that you turn on. I gradually learned to hear with it. The retired systems analyst had a profound hearing loss from childhood. After being deaf for almost 40 years, she was suddenly able to perceive sound, but she pointed out that she could not identify much of what she heard. I had to make sense of all these new strange sounds that I would hear. I was fascinated with learning to hear. It wasnt quick. Once I learned what a particular sound was, the next time I heard it, I would know what it was.

Beverly Biderman

From left, Beverly Biderman, Carlos Alberto Augusto and soprano Marina Pacheco

Biderman gradually became deaf as a child through a progressive hereditary hearing loss. The gene was passed on to her by her father, who was also deaf. She was born in Picton, Ont., but when she was 12, her family moved to Toronto. By that time, she was so deaf she could only lip read. I could not use the telephone. The hearing decit did not stop Biderman from marrying, attending university and having a fullling career in computer programming. But the cochlear implant changed her life dramatically, she recalled. Until then, she said, I didnt realize how deaf I was. Her memoir, Wired for Sound, was cited as one of the Globe and Mails 100 notable books for 1998. In fact, a Hollywood producer optioned the book for a lm, but was not able to get the funding to proceed, Biderman said. Another person who read the book, R. Murray Schafer, the well-known Canadian composer, recommended it to his protege, Augusto. The Portuguese composer did a graduate degree in music in Canada and studied with Schafer. Carlos read my book and he contacted me by email a few years ago. He said he loved the book it moved him tremendously, Biderman said. He wanted to make an opera based on the book and he asked me for permission, she recounted. I told him, Go ahead.

A few years lapsed before she heard from Augusto again. His wife had died in the interim. This year he told Biderman that he had found a producer and a soprano. Im going for it, he said. Ive been wanting to do it for a long time. The opening of the opera, which is in English, was postponed from the originally scheduled February debut, because the soprano got sick. The solo performer played three different parts, Biderman explained. The soprano was unbelievable. She sang in English with such emotion and passion. When she changed roles, she changed her expression, her posture and her singing style.