The transitions experienced by an older woman with declining sight and hearing.

We sometimes think that the word `transition’ only applies to young people approaching adulthood. But of course we go through significant periods of change all though our lives. Here Carol Pollington - who has Usher 2 – reflects upon some of the major changes in her life, and the challenges of growing older.

Into blindness

As I idly weed my garden on a rare sunny morning I think back. I had known that I had Usher 2 from early childhood - but went through mainstream education and jobs so was able to push deafblindness to the back of my mind. By my mid forties, however, I was aware that I was having problems due to deteriorating sight and hearing. I was frightened of crossing roads, could not see in bright sunshine and I was moving closer to people to hear them. It seems minor now but I knew it was the start of things to come.

But I did nothing. I would not talk to my family because if I brought it into the open then it would be real – if I said nothing, then it wasn’t happening. I did not want to be deafblind. But things got worse and I was reaching the stage of not being able to leave the house on my own. Still I did nothing - I couldn’t face it. Then I had a reprieve when my husband became redundant and I could unobtrusively hold his hand. People often took us to be a very romantic couple! 

Two years, later when he returned to work I knew I had to face reality. I knew I was missing a lot of what was being said and I was lonely. One of the things that finally made me seek help was during the Gulf War, I received a phone call from the Home Office to tell me that my daughter, teaching in Kuwait, had escaped and was flying home. I couldn’t hear most of what was being said.

I knew that I was the only person who could change my life. What I wanted most was to be able to read again, to be able to get out and about on my own and to get a job because I didn’t want to be so dependent on my husband.

I finally started my transition in 1987, being registered blind and received weekly Braille lessons in my own home from a social services Technical Officer. This was a turning point. I had someone to talk to and ask advice. Things moved quickly. I applied for a guide dog and not wanting to fail the assessment, I obtained my first hearing aid.

I returned home from Bolton training centre, the proud owner of my beautiful guide dog, Zeal. I had made my first big transition. To the whole world I was a blind person.

Into deafblindness

I had still not made the transition into being a deafblind person though. I tried to hide the fact that I used a hearing aid. Now I can’t think why. Perhaps because I didn’t want people shouting at me or slowly mouthing words, or perhaps seeing me as totally pathetic.

Life continued to move quickly. I passed through college and university - made easier by the removal of cataracts which helped me to read print slowly but usefully. I also became a member of the Coalition of Disabled People in Manchester. This was another breakthrough. I learned of the social model of disability which locates disability not with the person with impairments but with environmental barriers and non-disabled people’s attitudes to disability. This restored my self-esteem. I no longer felt guilt at being disabled – it wasn’t my fault any more. I would not let the world measure my worth by how much I could see and hear.

For some years I had taught Braille at my local college and was looking into becoming a Peripatetic Teacher when I spotted an advertisement for a development worker with deafblind people. Armed with my newfound confidence and degree, I applied and to my utter astonishment at the ripe age of 56. I was once more gainfully employed. I am extremely grateful to the leaders of the blind and deaf teams at Tameside Social Services for having the foresight to employ a deafblind person.

Once the euphoria wore off I realised that, apart from having sight and hearing loss, I didn’t really know anything about deafblindness! Quite by chance I spotted an advertisement for a seminar in Birmingham run by Sense to launch a government paper “Think Dual Sensory” and attended armed with my well-travelled guide dog. This was my first encounter with Sense. I was overwhelmed by the help and advice I received and by the professionalism. I met Mary Guest and Marylin Kilsby who introduced me to other deafblind people, many of whom I met again at an Usher conference at Hothorp Hall. This was magic to me. Deafblind  people were not the sad pathetic people I had imagined – they were fun, lovers of music, positive and courageous. I could relax and did not have to pretend. I had become a deafblind person.

Becoming a blind deafblind person

Six years ago Clive and I retired to a beautiful spot in West Wales. A few years later,  I noticed deterioration in my sight but as previous, loss had been gradual. I was not unduly worried. But it was not long before I could not read print at all. I had been here before but the biggest change came when I could no longer see people’s faces.  This makes it hard to know who is talking to me and I’m not even sure whether they are actually talking to me or someone else. I find it extremely difficult to locate a person speaking to me - causing embarrassment as I hiss to my husband “who is it?” or turning to speak to their face but miss it by two feet or more.

It also distressed me that I have such difficulty communicating with deafblind people using British Sign Language (BSL) as I can't tell whether they are signing with other signers or when they've finished.

Once again I felt my independence ebbing. It was much easier and quicker to let others do things for me and to let them speak for me. I was losing my hard gained confidence. I felt like crawling under a bush and staying there.

Sensibly, this time I did not waste ten years of my life before seeking help. Outreach worker at Sense Cymru, Rhian Angharad, has given me tremendous emotional and practical support and I now receive four hours a week communicator-guide assistance which has given me far more control over my life. I also became a Sense trustee, treasurer of my local Labour Party branch and joined a local disability group - all of which have helped to restore my confidence.

As my sight deteriorates even more I know I am not through this transition, that I am still resisting change and that there are new skills I must learn.

Family transitions

I do not exist in isolation of course. All of my transitions affect my husband and two daughters. Perhaps not wishing to appear self-pitying, I have found it difficult to talk to them about deafblindness. By some form of osmosis I expect them to know what is happening to me. How difficult this has been for them is not my story but theirs.

Without their love and understanding all my transitions would have been much harder and soul-destroying.

Recently, I discovered through Sense’s “Express Yourself” creative writing competition that I could indirectly express my feelings by writing poems that my family can read.

Becoming an older woman

Getting older is another change that I am living through. I have found old age an ambiguous process. I cannot divorce ageing from deafblindness because that is what I am – but this does bring consolations. For a start, I cannot see myself in the mirror. I can see other people’s white hair and lined visage but me, I will be forever young! 

Another consolation is that as a younger person with sensory loss, I stood out in a crowd, especially when I got my guide dog. But now I merge into the background as most of my contemporaries have sensory loss and as they age further the more this will be the case. I resist a gleeful urge to get my own back by shouting slowly to hard of hearing people “Why...don’t...you...get…a hearing aid?”   

Though most of my peers seem to find signs of ageing depressing, this doesn’t affect me to the same degree. I have better things to do with my life than to worry about than a few lines and spreading girth. Deafblind people have spent their lives worrying about things far worse.

So I concentrate on getting the most out of life: we keep fit by taking long walks on beaches in the hills and country lanes. Growing a bit older has made us talk about the things we always wanted to do and haven’t got round to. Last year we walked the Brecon Beacons and next year, having heard of Colin Bennett’s experiences of walking the Pilgrim’s Way, makes me determined to do this. Having said this, there is a danger that older people can feel they must be “doing” something all the time. I don’t have to prove anything any more to myself or the world.

I may not worry about ageing but perhaps I should worry about old age? I don’t think it’s wise to dwell on old age too much but common sense tells me I should have plans for the future. Trouble is I want to enjoy the present and not to have to live for future possible eventualities. There is always compromise. When we retired I agreed that buying a house on top of a mountain in the Yorkshire Dales miles from habitation was perhaps not a good idea and willingly we moved to a large very Usher-friendly house three miles from a small market town. There are no buses but we do have near neighbours, and we are living on the top of a hill. At 70 we realise we might find maintenance and driving difficult and will then move, hopefully when we’re 80! What is left unsaid is that if Clive dies before me then I would have to move.

As my deafblindness will most certainly progress this would be hard on my own - but I refuse to live my life according to something that may not happen. I am not naïve. I know that my quality of life will change without Clive and I mentally do try and prepare myself for this possibility without dwelling on it too much. 

What will happen when I can no longer look after myself is not something I want to think about. I can only hope that Sense’s campaigning for more awareness and training in residential care homes proves successful. One thing I am determined about is that I will not be looked after by my children. It will be an incentive for me to be interesting so that they will visit me - and that is all I wish.

These are my fears with regard to ageing. I find it strange to think that not only deafblind people will share these fears but all people progressing into old age. Ageing is a leveler.

As I blithely weed out what I hope is a buttercup and not a Welsh poppy, at the age of 68, I contemplate the future with trepidation. There will be further transitions. They will be harder. I hope I can find the skills, support and determination to continue to enjoy life as I do now.

What has helped?

Everyone is different, but these are some of the tings that have helped me:

• Learning braille has enabled me to relax and to enjoy literature, without straining to use my deteriorating sight and hearing. I use a computer or my reader for information but can sit down in front of the fire with my husband and read the latest Ian Rankin or re-read Dickens. I also know that I can use Braille technology on my computer and to communicate if I need to.

• Finding help - and recognising that this is not a sign of weakness but a means of keeping independence.

• Mixing with other deafblind people and families makes me feel I am not alone and are a constant source of inspiration.

• Express what you feel, through music, writing or talking to someone does help.

• Hang on to your self-respect and determination to get through.

• Hold on to the things you enjoy – in my case, reading, walking, camping and real ale.