We talk to her about her hearing loss journey and embracing her hearing loss.
Sandra’s hearing loss began affecting her when family members commented about the television being too loud and she was not able to hear them. It was also at this time that she began to notice she was missing things people were saying. When she attended a training course she found she could not understand what the trainer was saying.
“I actually complained on my feedback form that she needed to speak more clearly and pick a room without noisy air conditioner, and without trains passing every five minutes,” Sandra says. “Still, I didn’t suspect it was my hearing.“
A little while later, Sandra decided to go to her general practitioner to have her ears syringed, thinking the only problem was a build-up of wax. The doctor found both ears clear and referred her to her local ENT department. Even at this point, the reality of hearing loss wasn’t even a remote possibility.
“I had never met anyone who was deaf,” she says. “I thought that I couldn’t be deaf because I could hear, if you see what I mean.”
At her hearing test, she wondered why there were so many gaps in the sounds being played into her ears. She was diagnosed with severe bilateral high-frequency hearing loss and asked if she wanted to try a hearing aid.
“With that, the appointment was over and I made my way back to my car, where I broke down in tears,” she recalls. “It was a huge shock for which I was totally unprepared, and I wasn’t given any sort of support afterward.”
Three weeks later, she had a hearing aid fitted, which resulted in more tears. This time, it was because of being able to hear birdsong, something that had been missing from her life for years without her realizing. She decided to write an apology to the trainer she had complained to.
She rarely wore her second hearing aid.
“They were old analog aids,” says Sandra, “and because I only had a loss at high frequencies, I found wearing two was overpowering, and had the ‘head in a box’ feeling.“ Two years later Sandra was living in a different town and working at a different job, where she met someone else who was deaf.
She learned about the then newly available digital hearing aids, which at the time were only available privately. However, Sandra was fortunate to be able to take advantage of a UK Access to Work scheme fund, which covered the aids.
“I started my Open University (OU) degree around that time,” she says. “It was ideal for me as most of the work, even then was online, and [involved] just a tutorial meeting once a month.”
In 2002, Sandra met her new partner, now her husband. The following year saw fresh challenges in the form of a job working for a large council. This job was high level and with more responsibility than the previous one. “Over the next 14 years, I had a fulfilling career, managing mainly with my hearing aids, having a special phone, and occasional speech to text reporter funded by Access to Work, for certain meetings,” she says.
Not one to let the grass grow under her feet, Sandra started her own business as a Humanist Celebrant in 2011, after qualifying with the then British Humanist Association (now Humanists UK). In her spare time, she began taking part in amateur dramatics, something she hadn’t done for around 40 years. It was challenging but something she still loved.
In 2016, a hearing test confirmed that her hearing was getting worse. The results showed she was now profoundly deaf across most of the frequencies.
“With the stubborn bit of normal hearing at only the very lowest frequencies, I now had NHS digital hearing aids, no longer the discreet little in the ear ones, but big brown behind the ear ones,” says Sandra. “I simply didn’t care what they looked like; they helped me to hear.“
“I simply didn’t care what they looked like; they helped me to hear.”
Sandra soon began managing a team and became senior manager, regularly attending meetings. She also changed her method of communicating.
“I had stopped using the phone altogether and had a note on my email signature telling people to email rather than phone,” says Sandra. “People had to come and see me face to face to talk to me, which was nice.”
By 2013 she had become a grandma to three girls, who were all born in December.
“My grandchildren have grown up with me being deaf, and are wonderfully deaf aware, brilliantly clear speakers and patient repeaters, not to mention having a wicked sense of humor when I get things wrong,” she says.
Deciding to get fitter, lose some weight, and swim better, Sandra — who likes a challenge — competed in her first triathlon at the age of 54. Four years later, she says she is fitter than ever and still enjoying sports.
Work-life changed in quite a dramatic way, however. “At work, gradually the extra effort I was having to make to communicate on a day to day basis just became too much,” says Sandra. “I didn’t realize this until I had to be off work due to prolapsed discs in my back. After a couple of weeks off, I realized how relaxed I was despite the pain I was in, and then how stressed I had been.”
During the next few months, her back healed thanks to “fantastic physio.” However, she realized that she didn’t want to go back to work. Instead of returning, she took early retirement and spent some months thinking about what she would do next. It didn’t take too long before she realized that she didn’t want to retire at all. Instead, she wanted to work fewer days per week at a place where communication support would be available.
“I applied to do voluntary work as a trustee for a deaf charity, deafPLUS, and was thrilled to be appointed,” Sandra says. “I’m now the Chair of Trustees, which is a fantastic challenge and so rewarding. In November 2018, I was appointed as a Disability Qualified Tribunal Member for the Ministry of Justice. My job is to sit on tribunals when people are appealing to the loss of their disability benefits. I have a Speech to Text Reporter to ensure I don’t miss anything, and I really enjoy this important job.”
This September, she will begin a similar role as she gradually builds up her workload again. Sadly, because of experiencing too many hearing related issues, she has closed her Humanist Celebrancy business.
“It’s been amazing, but it has reached the point now of being stressful, and not feeling that I’m performing at my best sometimes due to not being able to hear,” she says. “So a hard decision, but the right one.”
Sandra is realistic yet her positivity shines through.
“I think for me, living with hearing loss is about making sure that I don’t take on things that will be too much for me – organizing my work and private life to maximize my capabilities,” she says. “This means being open and upfront about how people can help and support me, positively advocating for things like captions at the theatre and cinema and embracing new technology that can help such as the Roger Pen. I’ve always been a positive person, and focus on what I can and want to do rather than on what I can’t or what will be too difficult or stressful.”