Sylvia’s story
Sylvia enjoyed perfect hearing for 40 years, until one day she suddenly lost her hearing in one ear. After years of being in denial, she finally took the steps to address the communication difficulties she faced by attending a lipreading class. She also sought help from Hearing Link through one of our support groups and is now volunteers supporting others who experience sudden hearing loss.
For some 40 years of my life, I enjoyed perfect hearing, but then things changed. Firstly, I became aware of some hearing loss in one ear, followed by the other. Discreet hearing aids helped me cope, until one day I had a sensation in one ear as though under water. I had no idea what that meant and attributed it to having been swimming. The following day I awoke to discover I had lost my hearing completely in that ear. Life upended dramatically for me and so began my hearing loss journey.
Sudden Sensorineural Hearing Loss
The audiologist whose care I was under at the time, panicked upon realising my ear couldn’t receive any sound. He offered no explanation; but advised seeing an Ear, Nose, and Throat (ENT) specialist as soon as possible who in turn, confirmed that I had suffered Sudden Sensorineural Hearing Loss (SSHL).
The ENT specialist said: “If only you had got to me earlier, I might have saved your hearing with steroids”. It is essential if you have experienced SSHL for you to receive steroid treatment within 24-48 hours for a chance to prevent further decline or possibly regain some of your lost hearing. I was unaware of that.
I remember my GP saying: “Oh bad luck”; and thinking to myself that she hadn’t the faintest idea of the shock and emotional turmoil I was experiencing. I kept searching for answers, but there were none, apart from the vague possibility that toxins from jelly fish sting, I had received a few weeks previously, might have triggered it. None of this helped of course and I was left to pick up the pieces which took some years to do.
My experience highlights the need for greater awareness of SSHL amongst hearing care professionals and doctors. It is also important that anyone with hearing loss is aware of the condition because it could make all the difference in retaining hearing.
Life before and after loss
Prior to SSHL, I led a very busy and sociable lifestyle and did a lot of entertaining. I had two teenage children, worked as a French teacher to adults and children, and was involved in several committees.
Gradually, I withdrew from most of my commitments and social engagements. The fear of not hearing and having to explain was overwhelming. Whilst I carried on with some teaching outside of school, I avoided telling students, which created a lot of anxiety for me.
I think the sense of having become ‘a lesser person’ somehow was an overriding feeling and that led to lack of confidence – something I had never suffered from previously!
I no longer wanted to entertain or meet old friends, as it was so dispiriting and demeaning not to be able to converse normally. I also didn’t want them to feel sorry for me.
I felt very alone, as I didn’t know anyone else with hearing loss and my family were at a loss as to how to help. In any event, I wasn’t receptive to advice as I was too wrapped up in my own self-pity.
To compensate, I engrossed myself in studying languages with the Open University on computer. I convinced myself that was sufficient for my life ongoing, and it gave me the excuse not to socialise, until one day something triggered a need to start a new life.
Support networks
My daughter ran a half marathon to raise money for a hearing charity, which made me realise how much my family cared, wanted to help and yet, thus far, I had done little to help myself.
I enrolled in a lipreading class and it was a turning point. I gained confidence, not only in understanding speech more easily, but also in being more open about my hearing loss. It was therapeutic to share day-to-day issues with hearing loss and laugh about them. I also learned strategies to help with social situations.
I am lucky to have found an audiologist who favours a holistic approach to hearing loss and has gradually gained my confidence. I can rely on him for advice and ongoing support, as well as any new technology that may help me hear a little better. He’s always interested in whatever new venture I’m trying as part of my journey.
Metamorphosis
I became actively involved with RNID for a pamphlet they produced on lipreading. It gave me an added boost and I began to take my life back into control. I arranged a meeting with the practice manager at my GP surgery and established my needs in terms of communication. The only means of contacting the practice was by telephone, so I began a year-long dialogue to ensure I and others could contact the surgery via Relay UK. The Practice Manager also engaged with RNID as they were seeking examples of ‘good practice’.
By this time, I had metamorphosed into someone who could stand up for myself again and wanted to use my experience of hearing loss to help others.
I decided it was time to volunteer for a hearing charity.
Hearing Link
I chose Hearing Link because it seemed to be a friendly team with a small number of staff and volunteers. This appealed to me as I felt it would enable me to get involved. I’m delighted to say I made the right decision!
Through a knowledgeable mentor, I initially became a Helpdesk volunteer. It didn’t stop there as there are many opportunities to reach out to anyone with hearing loss, as well as their families.
I was given the opportunity to attend a LinkUp Group over a weekend in Edinburgh, with my husband. It provided him with a huge insight into the many and varied problems hearing loss creates for individuals and their families. For me, it confirmed that I had come a long way along my hearing loss journey, but there is still work to do and there will be ongoing, as life constantly changes, bringing different challenges. Covid-19 is a prime example and requires a completely new approach to avoid isolation.
Hearing Link is evolving too and seeking new ways to reach out to more people and let them know that they are not alone, and that practical help and support is available. Life with hearing loss is not the same as life without it, but it can be equally enriching. It just takes time and the right support to realise that.
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Webpage published: 2021