“I had so many plans,” Chrissie Whitfield admits, listing off a selection of exciting activities on her lifelong bucket list, all of which are connected by one thing – the need for good vision.
“Photography, travel, pottery, learning to make jewellery,” says Whitfield, the chief outcomes expert for Whitfield Factor Advisory and Coaching who’s a long way from even tickling retirement-age. “I’m an independent Arbonne consultant and was considering taking a year off work to retrain as a make-up artist.”
Founder of Bikers Unite Against Cancer, which has raised more than $15,000 for Cure Kids, she was also looking forward to indulging her passion for motorbikes and spending more time with her three “gorgeous” grandchildren. But in 2018, a routine eye test revealed she had drusen.
“I went for an eye test to update my glasses and was told I had cataracts and very early onset dry macular degeneration (MD). I was upset. My mum has MD but was in her late 70s when she was diagnosed.”
Whitfield went to a specialist to have her cataracts removed in mid-2019. An optical coherence tomography scan revealed her MD had turned wet and was very aggressive. “I needed an injection that day. I felt so overwhelmed. I walked out into the carpark and totally bawled before pulling myself together to go back inside.” She says she felt confused and panicky at how quickly her condition was progressing, and that things were out of control.
After three injections failed, Whitfield was referred to Dr Jim Borthwick at Southern Eye. She had subretinal fluid at her macula.
“When I met her Chrissie, she had signs of MD with drusen at both maculae, but the serous fluid was not responsive to anti-VEGF treatment. She was also on steroids, a common association with central serous chorioretinopathy (CSCR),” said Dr Borthwick.
Used to manage her asthma, Whitfield was unable to stop the steroids and was diagnosed with CSCR. She was given photodynamic laser therapy and further anti-VEGF treatments with Eylea. Finally, there was some improvement, she says, adding she has recently been told she can reduce her injections from four-weekly to eight-weekly.
But the diagnosis and subsequent treatments took their toll. “I felt terrible; stressed, overwhelmed, completely blindsided by the diagnosis. I had logically and practically worked out a timeline of things I needed to get done before I retired and suddenly that wasn’t an option anymore. I was also diagnosed with an acoustic neuroma at the same time. The whole thing impacted the way I was living my life and how I was loving it.”
One of the most stressful parts of the journey was the lack of information, says Whitfield. “I think I got a pamphlet to read, but I needed more than that. I needed to understand practical things like who would employ me if they knew I was having trouble with vision? I needed to know how I would be able to pay my mortgage and how come some days I can see detail and other days I can’t? Also, why did my eyes hurt so much after each injection? Was it just me? I am a practical person that always gets back up after getting knocked down, but I couldn’t even figure out which way was up.”
Whitfield contacted Macular Degeneration New Zealand (MDNZ), who she says were great, but she needed to reach out to other low vision patients who knew what she was going through. After joining a US group online, she met a lovely lady from Wellington who also had early onset MD, so they decided to meet.
“I was in Wellington for work and we caught up. We talked about how great it would be to do this with other people, over a drink, so I reached out to other early onset MD sufferers and arranged a group for next time I was in town.”
The group began meeting in a café every time Whitfield was in Wellington. It expanded and Whitfield began taking her mum Ngaire, who is 91, while the youngest group member was in their 30s. “Mum and I agreed we felt so much better after each meeting. To talk to people who shared their stories of adjusting their thinking and expectations, helped the rest of us to better accept what was happening. I’m all about empowering others, mentoring and coaching is a win/win as we all get to learn and grow.”
After discussing it with other group members, Whitfield decided to launch a nationwide charitable trust that would offer a similar support service to all low vision patients and join the dots between existing eye health agencies. Today, #Blindsided NZ primarily operates on social media and over Skype, but Whitfield is raising funds through Givealittle to turn it into a charitable trust and promote it across the country.
“I’ve connected with a great group of people of different ages with a range of conditions. Whether it is MD, retinal detachment, cone-rod dystrophy or something else entirely, most of the members share their stories and trials and tribulations, and the response is heartening and restores faith in humankind.”
The group has also helped her come to grips with her diagnosis and change her life. “From diet to exercise to daily meditation, I’m spending much more time on self-care,” she says, admitting she is also keen to make the most of her central vision while she can. “I’m on a mission to go to the movies as much as I can, to take as many photos as I can, to travel around New Zealand in my, relatively, new caravan until I can’t drive anymore. My focus is less about paying my mortgage and more on removing stress and giving myself permission to enjoy my life and the people in it.”
In the future, Whitfield says she hopes to be able pair people up with services, coach them back into the workforce and connect them with like-minded employers. She says she feels more advocacy is needed to help employers understand the value of the low vision workforce. “I have a strong voice and I’m keen to use it. I’m passionate about this and believe that with support I can help make a difference.”
For more information visit https://blindsided.nz/. To support the group, go to: https://givealittle.co.nz/cause/help-blindsided-nz-support-people-with-low-vision