Sundowner resident is losing her sight and hearing but is making life work
Sue Scharf will eventually lose her sight and ability to hear, but her new guide dog and cochlear implant help her cope with every day life.
Fifty-nine years into her life and Sue Scharf is only now hearing the sounds of birds, water running and how some letters of the alphabet sound for the first time.
The Sundowner resident has Usher Syndrome, which is a double whammy as the rare genetic disorder has affected both her hearing and vision. “I have worn hearing aids all my life while the eye issues started in my 30s but got worse in the early 2000s,” she explained.
“Then in 2018, it became much worse and I can now only see in a tunnel. There is no peripheral vision. A good way to describe it is looking down a vuvuzela toward the wide end, so as it pans out I see more detail. The more the field increases, the more I can see. But I am also fully night blind.”
The disorder eventually results in full loss of hearing and sight.
However, after she had reached the level that she could not get any more powerful hearing aids, Scharf had a cochlear implant that has improved her hearing immensely in the last two years. She has always relied on lip-reading to compensate for poor hearing. Now that her sight is failing her faster, she is grateful for the implant as lip-reading may soon be impossible.
“The implant in my other ear will be done in January. I am starting to hear sounds that I have never heard in my life. Hearing bird sounds and the sound of water running is very exciting for me now. Things like the letter ‘S’, my own name has Ss in it and I have never heard it properly. You don’t realise you are missing it until you get this wonderful sound. ‘S’, ‘T’, ‘P’, ‘CK’…”
Still, Scharf is not certified to drive anymore, and since 2019 she has had a guide dog. April is an energetic four-year-old black Labrador supplied by the South African Guide-Dogs Association. April goes everywhere with Scharf, who had to admit she was surprised to find many shopping centres and businesses will still not allow guide dogs in.
“Since I’ve had her I can walk safely around the neighbourhood of Sundowner. We walk every morning for about 3.5km.”
Scharf walks with a cane as she struggles to see rises and dips in the ground.
Scharf is a dietician by qualification and had her own practice for about 26 years. Now she works as a sales director for Back To Basics Nutrition, a company producing dietary supplements, especially to mines. This involves doing a lot of presentations. Aside from some issues with directional hearing when people speak to her, Scharf said she has no issues working at home, at the office, or when travelling.
Casual Day
Casual Day is the annual fundraising campaign of the National Council of and for Persons with Disabilities (NCPD).
Already launched, the campaign runs until September 1, which is Casual Day. The theme of Casual Day 2023 is #ShareASmile with Persons with Disabilities. “This theme aims to promote kindness, goodwill, and positivity in support of persons with disabilities in South Africa,” says NCPD national director Therina Wentzel. “A smile can trigger a positive chain reaction of wonderfully, uncontrollable proportions. “In support of Casual Day, individuals and organisations are encouraged to purchase Casual Day stickers (R20 each) and specially branded merchandise before September 1, and to wear them with pride on the day. Visit www.casualday.co.za to find out where purchases can be made, or to order personalised stickers.
“Casual Day has raised over R404m since 1995, thanks to the wonderful support of members of the public who purchase their stickers from participating retail stores, participating companies, our 600+ beneficiary NPOs and schools that renew their participation every year. The proceeds go to persons with disabilities at schools, homes and workshops represented by the participating beneficiary organisations,” added Wentzel.
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