How living with an Hearing loss has affected my Life
Although I was born profoundly deaf in my right ear I enjoyed above average hearing in the left one, and lived a "normal" hearing life until my mid - thirties. The only time I had any difficulty was when I tried to hear something to my right when in a noisy environment. Then, suddenly, and quite rapidly at first, I lost most of the hearing in my left ear. I feel this was as a result of being exposed to the loud noise of bus engines, in the confined space of the bus depot, on a daily basis, within a two-year period, about 1975 to 1977, at age 35/6.
The local ENT Consultant operated to clear my sinuses, tried me on two types of tablets, and then gave me a hearing aid and told me I would "have to learn to live with it," as I would not get any of the hearing back. That was exactly what I did for over 15 years, but I found that although I had been partially successful in my work, becoming a Traffic Inspector at the local bus company, and then being put in charge of the bus operation in the next town (operated by same company), it became very hard. Because of my success at work with fraud detection etc, staff and public, I was not the most popular person with some staff, and even other officials, and some took advantage of my disability. Interviews always involved convincing management that my hearing loss would not effect the position that I was applying for. I realised that people were "carrying" me and I lost much of my enthusiasm for my work, even though I got full support from my District Manager who gave me work that I could cope with better, but this tended to create petty jealousy among other officials. Within two years of bus deregulation I was made redundant, as part of the "re-organisation". As good an excuse as any to get rid of me, and I found myself at a very low ebb. At the end of 1988 we moved back to “home town” and purchased a small guest-house, but I was unable to do many simple things like answering the telephone or the door, or so I thought, and I completely isolated myself, pottering round the house doing little things that didn't involve my hearing, and avoiding guests or if I went out, people who wanted to talk to me, after having previously had a very active and "involved" life. I also allowed my wife to take over running our lives, because it was “easier that way”, and I simply avoided anything that drew attention to my loss.
In 1993 everything changed when I went to collect new batteries from the Hearing Aid Clinic one day. I was moaning to the staff about not being able to hear on the telephone, answer the door or even hear the doorbell, even watching TV was a problem unless there were subtitles, which were much less frequent then than now, or if it was sport. I was told that I might get some help from the Social Services Special Officer for Hearing-Impaired. He in turn provided me with a loop system, visual doorbell system and a vibrating alarm clock, all on loan, and provided information on telephones with special facilities. These items, the advice given, and an introduction to Hearing Concern (H/C), the national organisation for the Hard of Hearing, completely changing my life and gave me back some of the independence that I had gradually lost as my hearing got worse. Hearing Concern invited me, first to Darlington to train as an Adviser, and later to Manchester for Deaf Awareness training as a Sympathetic Hearing Scheme Trainer, and later still, to become a member of the Adviser Service Training Team. All these things went towards giving me back the confidence to question why I had coped for over 15 years without getting to know about the help that was available, and made me think about others who were possibly much older and less able to find out about these things than I was.
With financial support from Social Services, backed up by the Special Officer we formed a local group for Hard of Hearing people, and I became secretary. I was able to build up a collection of equipment worth over £2,000. I then set about displaying and demonstrating at any local functions I could get an invite too, including Lip-reading and Sign Language classes and Care Staff Training and sharing any donations between my club, H/C and replacing some of the equipment which very quickly became obsolete.
I later joined the local Deaf Society and then became treasurer. As an official of both groups, and having loop equipment available to use for meetings etc., I was invited to represent them on several committees, particularly to do with access. I was hoping that I would encourage others to get involved. I took our collection of technical equipment all round the country to the H/C Adviser training sessions lectures. This became very popular with the trainees, as it was a working display that they could try for themselves and compare notes and experiences during the courses. Technology changing at such a dramatic pace; the equipment provided to help us very quickly becomes obsolete. Another problem was that we are all different and the suitability can very much depend on our type and amount of hearing loss. I got involved with the Lip-reading classes that were run by the LEA/FEFC and after several years of fighting to remove charging and improve conditions, we managed to get funding from the Area Health Authority to allow the club to take them over. I set up my club and regional rounds of H/C Lip-reading and Clear Speech competition and competed in the London finals myself.
We managed to get funding from the National Lottery via the Healthy Living Centre to provide classes in the two local towns.
None of this was easy for me because I still struggled when it came to contacting people to set these things up and I had to rely on my wife in particular to make and take telephone calls. This could be very frustrating as she would, on many occasions, and although I explained what to say, pass on her own version of the messages and made decisions without consulting me or forgetting to give me messages she had taken. This was mainly because she was not in the best of health herself; and would regularly become depressed and refuse to answer calls even for herself, and would shut herself away for several days at a time. I became very reluctant to rely on her, unless it was absolutely necessary. She would continually talk to me, and others, about “you and your deaf friends”
In 1999 my wife suffered a brain haemorrhage and my roll changed from having “a carer” to being a carer. When she was taken ill during the night I had to contact the emergency service and other members of the family, many of whom were nearly 100 miles away. I had to take care of a Guesthouse full of guests and travel 100 miles daily to visit my wife in Intensive Care, all of which meant overcoming my communication difficulties. This was made more difficult because other members of the family (in particular, my wife's children from a previous marriage) were advising hospital staff and GPs that they should ignore me and contact them "because I was Deaf"
I had to close the Guesthouse, and sell it; as well as moving into a ground floor flat when my wife was allowed to leave hospital, because of her mobility difficulties. I drastically reduce the amount of voluntary work I was doing so that I could look after her and sort out our affairs. As my wife's health improved I took some of my tasks back on again. The introduction of the Disability Discrimination Act and the Primary Care Groups and then Trusts made it very important that the Deaf and Hard of Hearing were represented, so I remained part of my hospital Access Focus, Yorkshire Coast Access, BGOP (The Voice), DAG and CVS groups, as well as watching and advising on the progress of awareness training of Hospital, Borough Council and Social Services Staff. I continued to be associated with Hearing Concern during the next few years through the affiliation of my own club, Welcome Ear Association, but with difficulty. I was involved in many changes over the next few years. I remarried my first wife on 3rd March 2004. We were first married in 1962 and divorced in 1975. We have 3 children and 6 grandchildren. I had remarried in 1980, but divorced my second wife after several unhappy years, in 2002, mainly caused by the children of her previous marriage after she had the stroke. In 2003 I successfully applied for Lottery funding as Secretary of Welcome Ear as part of the Healthy Living Centre to provide Lip-reading classes and Deaf Awareness and we have had classes at Scarborough and Filey and I supervised it over the next 5 years.
Unfortunately my wife was diagnosed with Breast Cancer during this time and had to have a mastectomy. Hopefully the Cancer will not return. She also has other health problems which mean that if she has a problem she worries that the cancer is returning.
In 2003, when the Government provided £94 million to modernise the Hearing Aid Service, with help from my group I was asked for feedback about the literature that the ENT Dept. was intending to send to patient about the allocation of Digital Hearing Aids. Shortly after, when I asked about having a Digital Aid myself I was told by the Consultants understudy, that I was too old (62) and it was too expensive. When I wrote to the ENT department about this, pointing out the obvious, I was given an apology and received a Digital Aid shortly after.
In August 2004, although I got a little more clarity from the Digital aid, it didn’t give me any extra volume and I was finding it more and more difficult to cope with the voluntary work that I did. I asked to be referred to my local ENT Consultant and despite the same understudy telling me the same as for Digital Aids the Consultant referred me to the Centre at Bradford Royal Infirmary and I started the assessment process for Cochlear Implant in March 2005. I had my C/I operation in October 2005. Since then I have had an upgrade to the “Nucleus C5” and because of the success of the Implant I have become more involved with HCL as a Community Volunteer. Have “chats” with prospective C/I uses etc. when I attend my Centre at Bradford and the Ear Foundation at Nottingham. I have recently been invited to take part in research at York and Nottingham Universities and hope to train as a Volunteer Advocate with Cochlear Europe
Roger Keeling