How volunteering can help to get your “mojo” back
Hazel Kelly, age 79 (as of December 2023), has a rare combination of conditions Fuchs’ endothelial dystrophy and Band Keratopathy. With a love of organising events, sight loss impacted Hazel mentally when she was no longer able to do what she was passionate about.
Help from and volunteering with RNIB gave Hazel back her ‘mojo’ and enabled her to get back into running events in her local community, creating the Corstorphine Connect Sight Loss group.
“I have a condition called Fuchs’ endothelial dystrophy, which is basically where the cells at the back of your eye which pump the fluid in and out of your cornea stop working. This causes the cornea to go yellow and thicken, creating vision problems, which can be treated nowadays with a corneal transplant. However, alongside this, I also have a condition called Band Keratopathy, which causes calcium build-up across the centre of the cornea. The combination of the two is very rare. To do the transplant, they can’t have calcium obstructing it, so they have to medically scrape this away. One eye had too much build-up, but they were able to remove the calcium on the other. However, when they did this, they found a macular hole that had been developing over the years, so unfortunately, the transplant wasn’t particularly successful. I now have no central vision, but it did improve my peripheral vision in that eye, which is helpful for walking around. Sight loss definitely affected me mentally. I had two years of being quite dejected and miserable because I couldn’t do the things I was used to doing. All my life before losing my vision, I had been a banker by trade and had run events as a hobby.
Hazel Kelly wearing an RNIB jumper while smiling at the camera.
I was part of a group that started a fair in our community in Edinburgh in 1986 to bring the community back together again after roads divided our village. I organised the entertainment and activities for everyone from the children to the elderly people in our community, and the fair is still running to this day. I then ran a concert series for Corstorphine Trust, the local historical organisation, for around 20 years before retiring. After I retired, I quickly got bored and started organising chamber music events in our local churches. I ran that for two years, during which I secured a grant with Creative Scotland where they subsidised tickets, but it still became quite difficult to pay the group. Then I went on sabbatical for my first transplant, and after that, I never returned.”
Help from RNIB
“During my vision rehabilitation, I was signposted to RNIB’s Living Well With Sight Loss course, called ‘Looking Forward’ back then, which is what started the change in my life. They brought in different people to tell us about what was available to us and of their own experiences living with sight loss. Eventually, I became a speaker on the course myself, which I did for about two years before I was asked to become a Connector, as RNIB Connect had started around this time. Even though I had a lot of experience leading things in my community, I’d lost all my confidence by this stage, but tentatively accepted the offer anyway. RNIB sent me on a training workshop with other people from around Scotland with vision impairment. Meeting other people in similar situations made me feel more comfortable in my own skin and with my sight loss. It inspired me to start something in my own community where other people with sight loss could do just that, through the training that RNIB had given me. So, I organised a coffee and chat meet-up, which was the start of what became the Corstorphine Connect Sight Loss group.”
Volunteering for RNIB
“We now have about 40 members in the group, and six volunteers, not including myself. I find and interview them and then RNIB trains them up. The first half of the meeting we run as a coffee, cake, and chat, so that people get a chance to meet each other. And in the second half, we organise someone to come in and give a talk. The most recent talk we had was by a group called ‘Care & Repair’, which is a charity that organises accessible home improvement services for elderly people and the disabled community. Most of our attendees are elderly and have age-related sight loss, which means their sight has usually deteriorated gradually. This means they’ve usually never been told what is available to them and generally don’t have access to information online, so I produce a newsletter once a quarter with useful information, updates, and our upcoming events, which I post through their door. We also hold parties and run trips like an afternoon on a steam train, or an evening at a pantomime. The goal is to get people out of their homes and doing things they wouldn’t normally do.
After I stopped being able to do the things that I was used to doing due to my sight loss, getting involved with RNIB and running the Corstorphine Connect Sight Loss group gave me back my mojo. I was able to start using all the talents I’d gained from my past, and even though it’s all been in the aid of other people, it’s really helped me personally. It’s made me feel like I’m back to being me again, despite my sight loss. And I never would have done it if it hadn't been for RNIB.”
