Learning to live again after sudden sight loss

“Not being able to pick the kids up from school made me sad. It’s the day-to-day things you can’t do anymore that people take for granted.”

 

In January 2018, just after her 45^th birthday mum-of-two Charmaine suffered a stroke so severe doctors didn’t think she’d survive. An ear infection led to a bleed on her brain which left her with severe hearing and sight loss. Charmaine underwent physiotherapy and rehabilitation to regain her mobility and physical strength. Back home with her partner, Simon, and their daughters, Alex (6) and Sophia (4), Charmaine struggled with the impact her sight loss was having on everyday tasks, such as making lunches and pushing her children on the swing.

“At the beginning, doctors didn’t think I would make it,” says Charmaine. “It started with a severe ear infection; I didn’t realise how severe it was. I called the NHS and soon found out that I had a bleed on my brain, which would have detrimental effects.  

“I spent 2 months in Charing Cross hospital following my stroke before being moved to the rehabilitation centre at Northolt Park. At the beginning they didn’t think I would make it so I’m very lucky to be here.

They looked after me very well, particularly in terms of physiotherapy – they were amazing. Their team got me back on my feet with 3 short sessions a day. I’m moving a lot better now than I am at home. I’ve been out of hospital for nearly a year this month.”

Coming out of hospital life changed completely for Charmaine and the family. Although she had made huge strides with her mobility being a mum and getting through each day was a constant struggle.

“The biggest problem for me is the sensory overload that comes with sight and hearing loss; hearing bad noises and the really bad whooshing sound in my right ear.  I was a big walker and quite active even with my young children. Now I feel my mobility is impaired through the whooshing. I sit on the sofa more than I ever would have done in the past and that’s quite hard for me. You don’t realise you’ve got it good when everything is working well, and then you’ve got something like this that hits you. And I do have days of feeling, you know, a bit down.”

Things started to change for Charmaine when she visited a mobile advice unit run by one of the Greater London Fund for the Blind’s partners. Through regular meetings with service manager, Kevin, Charmaine learnt how to use assistive technology to help with day-to-day tasks and feel more connected. After being so isolated and alone, Charmaine was able to contact her friends and family and regain her love of books and learning.

“It was quite a long time between leaving hospital and getting support with my visual impairment. Having Kevin to talk to is so helpful. He taught me how to use voiceover to read emails and get back on social media where you [can feel more connected] and do things you thought you couldn’t do. For someone who is visually impaired this is really confusing but Kevin has helped me to swipe through and make this more accessible. I’ve since been to a gig, I’ve taken the tube and proved that I could do it!

“A lot of people in this country are visually impaired and there could be more done to help them. There’s so much technology – the type that Kevin is helping me with – with all its capabilities. It really engages and motivates you to get you going again, to be mobile. A friend of mine works for the NHS and I remember her saying ‘You’re only disabled by your environment.’ If the environment allows you to do what you need to do then you’re not disabled anymore. If people can help people more, then the world is your oyster.”

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