When Sue*, 63, was told she may lose her vision, it threatened to upend the active, proudly independent retirement lifestyle she loved.
“The ongoing uncertainty over my future was initially very difficult to deal with,” she admits.
However, she quickly began to adapt. With early preparation, education, adjustments and support, she can now look to the years ahead with immense “glass half full” optimism.
Sue has been dealing with ongoing eye issues for about 15 years, with some surgeries required in both eyes. Four years ago, this string of issues escalated when a macular hole developed in her left eye.
“A wonderful macular surgeon successfully operated on it and I no longer had a black hole in the centre of my vision. However, I would still get significant flickering in my central vision if my heart rate went up suddenly.”
“About 18 months ago, I noticed that vertical lines were starting to curve,” she says. “Telephone poles were looking warped. Reading was becoming very difficult and I’d ‘lose’ the central letters in words or extra horizontal lines would appear on letters and digits.”
“My eyes weren’t working well together. I’d often have flashing and strobing in my left eye, as well as intermittent pain. I’d get clusters of bubbles in my vision. I had to stop driving.”
Other lifestyle changes had to follow soon after;
“I was working as a volunteer bartender at our local club and a volunteer guide at our local museum. I had to give up these positions, as both involved looking at computer screens and reading.
“I have always been a voracious reader, so giving up reading books would have been hard, but thankfully some adaptions have meant I can still enjoy this pastime, just in a different way.”
“I do miss the independence of driving, but thankfully I can walk safely to buses and nearby shops.”
Despite these compromises, Sue has come to see her current day-to-day life as an opportunity to adapt and prepare.
“Every day I have vision feels like a bonus. I feel grateful to have time to prepare for reduced vision or blindness in one or both eyes. I also remain hopeful that medical research will lead to a cure.”
One vital early step is upgrading your home for the years ahead. Thankfully, much of this can be government subsidised.
“An assessor came to my home and approved a support plan. This included home modifications (including grab rails and bathroom/kitchen modifications), minor home maintenance and home safety assessment.”
“I will be purchasing specially modified kitchen equipment and visual aids. I will also have my bathroom and kitchen renovated to cater for visual impairment.”
“As a fairly disorganised and messy person, I am also trying to get into the habit of finding a home for everything and keeping things in order. Fingers crossed!”
“I now use plastic plates and cups to prevent ongoing breakages. Not very classy, I know, but I was regularly having to clear up broken glass and crockery. I also bought a dishwasher as I wasn’t always cleaning plates and glasses well.”
“The advance warning also meant that I have time to reduce some of the surplus clutter in my home and become more of a minimalist. I have removed mats and cleared passageways of unnecessary obstacles so that I am less likely to have accidental falls.”
Services such as the new SeeWay website provide a lot of free information, resources and support to help navigate the vision loss process. SeeWay’s Navigate Your Journey program is tailored to individual goals, like learning more about living with a specific eye condition, or getting support with digital technology. It can help you stay informed on what support is available. Searching answers online to low vision questions can sometimes instil fear and misinformation, or be from sources outside of Australia. SeeWay is local. It’s an online platform for low vision that was an initiative of Guide Dogs — so it’s trusted, and it’s free.
Sue has also been able to build a strong support network of friends and family who can help.
“I now have access to transport to medical appointments and a place in local community social support groups, including exercise classes.”
“One of my sisters takes me shopping and banking on a weekly basis, and assists me with filling in forms and doing internet banking.”
“A kind friend and fellow gardener also comes each Saturday morning to help me with weeding and gardening.”
Sue’s love of reading continues: audiobooks are on frequent rotation throughout the day.
“I listen to radio or old records rather than watch TV, as screen time tends to play havoc with my eyes. However, sometimes I play old favourite DVDs (mostly musicals) but listen to them rather than watch them.”
“I love cooking and now tend to stick with tried and true recipes I know by heart.”
“I am a guitarist at our local church, so now I enlarge hymn book pages onto big A3 sheets and colour code the chord changes. I tend to stick to familiar hymns I can easily recall.”
While her eye condition makes long distance air travel more challenging even holidays have fundamentally changed — but this has also opened up new ideas and opportunities.
“One of my children has booked a family cruise so I can travel with my family in comfort. So thoughtful!”
“It’s not hard to find joy in every day. I feel grateful to have had time to prepare and adapt for the future.”
“I have a wonderfully supportive extended family, as well as thoughtful friends and neighbours.”
“Life’s grand and I feel lucky to feel so cared for and so supported.”
If you (or a loved one) are in the early stages of vision loss, SeeWay’s Navigate Your Journey platform can help with the transition in the years ahead.
This free online service (an initiative of Guide Dogs NSW/ACT available Australia-wide) offers personalised information on how you can adapt and continue to live life to the fullest. Sign up here to get started.
*Names have been changed for privacy.
IMPORTANT LEGAL INFO This article is of a general nature and FYI only, because it doesn’t take into account your personal health requirements or existing medical conditions. That means it’s not personalised health advice and shouldn’t be relied upon as if it is. Before making a health-related decision, you should work out if the info is appropriate for your situation and get professional medical advice.