Your Stories

A childhood condition led to vision loss

Elizabeth Maxwell in profile - she sits in a chair wearing a red blouse with a blue scarf

"I'm a blind person who sees more clearly than most people I know."

Elizabeth Maxwell

So says Elizabeth - Lizzie - Maxwell. Now age 79, she is a veteran fundraiser for Fight for Sight and volunteers for BlindAid, whom we fund. We spoke to her about her life, motherhood and how she has adapted all aspects of her life after complications of a childhood condition left her blind. 

“Would you rather be blind or deaf?” Decades before losing her sight or even suspecting that her vision was impaired, a young Elizabeth or Lizzie Maxwell was told to answer this stark (and, these days, inappropriate) essay question during a primary school detention “for being cheeky” to a teacher.

Young Lizzie was unaware she would be blind by her late 30s. But her response to the question was prescient.

Today, replaying the 1950s classroom memory in her mind’s eye, Elizabeth - Liz to her friends - says: “The question took my breath away. I thought about the differences between being deaf or blind - where do you start? I remember writing, ‘imagine not being able to hear a child laugh, or the wind in the trees’. I thought about not being able to hear music or the sea. I decided that if I lost sight and couldn’t see these things, I could feel them. So, for me, it was a silent world that meant total isolation - not being blind.”

Complications of a childhood condition

Lizzie, a veteran Fight for Sight fundraiser, is blind due to a complication of the autoimmune disease Juvenile Idiopathic Arthritis (JIA), a childhood rheumatological condition with which she was diagnosed at age five. As a girl, she also had the related autoinflammatory condition Still disease.

A complication of this and JIA meant she developed the rare, inflammatory eye condition uveitis. This led to cataracts and then sight loss.

The northwest Londoner’s indomitable spirit reflects the values that drive our work, freedom, independence, connection and research. She embodies our mission to “Save Sight. Change Lives” and has also raised thousands of pounds since the 1990s.

Her experience highlights the need for research we fund, like a pilot study exploring the relationship between arthritis and vision impairment in children, with a view to preventing this in the future. 

“I’m a blind person who sees more clearly than a lot of people I know,” says Elizabeth of her lived experience, her clear, calm, warm and even tones hinting at her Royal College of Music training and theatre background.

“I live happy and busily, I love socialising and keeping fit with yoga or walking, and music’s a great passion. I’m still growing as a person, still learning and looking forward to whatever is to come next.”

Read more about coping with vision loss, including reports and projects we've funded. 

Coping with Vision Loss
A woman looking down being comforted by another woman holding her hand

A happy childhood

Born in Birmingham, a two-month-old Elizabeth moved to London with her brother and parents when her father, an engineer, transferred to a new role in the city.

She remembers a happy childhood, during which she developed a lifelong appreciation of music thanks to her maternal grandfather, a WW1 veteran and member of the Birmingham Festival Choral Society.

“My mother’s parents, Nana and Papa, stayed with us most summers and I could well have got my music, singing and voice skill from him,” says Elizabeth. “One day, I was on his knee, and he had a copy of Handel’s Messiah on his lap. He was humming away and pointing - with his beautiful hands and elegant, almond-shaped nails - to the notes. That was when I was introduced to sight reading.”

Elizabeth’s positivity and resilience are clear from the way she describes her happy childhood. It was a happy childhood, given the close-knit family and holidays on the West Country coast, but it also involved living with a chronic health condition, with month-long spells in Great Ormond Street Hospital.

She explains: “I spent the majority of my young life in hospital. It became my second home. I’d go regularly to have whatever ghastly treatment was needed to keep my muscles strong. I’d be in for a couple of months, then home for a couple of months, and it took many years to get me well so my legs were strong and straight. I didn’t go to school until I was about nine, and even then, I sometimes had to go back into hospital.”

From the electrodes inserted into her muscles to check nerve stimulation to having her legs encased in plaster of Paris - and the casts removed twice daily for physiotherapy - Elizabeth was a stoic patient. When she was at home, her mother devotedly ensured she stuck to a strict physio regime to retain movement in her limbs.

Read how we've collaborated to fund visits by young people who are blind and vision impaired to Jamie's Farm

Funding farm visits
Two young people visiting a farm, they are each holding a chicken in their arms

A Royal visit to remember

Typically, Elizabeth focuses on a happier hospital memory—the time she met the late Queen. She did not realise the identity of the immaculately dressed visitor until years later, but recalls: “Mummy had given me a party dress to put on, so that was special, and then in walked this beautiful person, white shoes, white dress down to her knees, white gloves up to her elbows.

She was carrying beautiful bunch of red roses and wore tiny pearl earrings and a beret. The most stunning thing were her beautiful eyes and translucent skin. My mother made a curtsey and all I remember the Queen saying is ‘I do hope she gets better.’”

Despite her closeness to her mother and the constant health treatments and appointments - including eyesight tests - Elizabeth was never told of any potential vision impairment.

She wore glasses and regularly had eye tests: “The specialist would say to my mother ‘there’s no change’. I didn’t know what that meant. I was short sighted, but my father was short sighted too. It never occurred to me anything was wrong.”

In retrospect, she believes her mother was told by the consultant that sight loss “was always a possibility”. As a youngster she had painful bouts of conjunctivitis but because she was under the care of a specialist medical team, she was not concerned.

It’s a reflection of her empathic nature that she speaks compassionately of her mother’s decision not to share the prognosis. “She kept a lot of things to herself with the way she was brought up, we lived in different times then and there were lots of things that people didn’t discuss. I doubt she even told my father, because my retinas were dying so slowly. And who wants to hear at the age of 10 you might lose your sight when you’re older?”

Elizabeth Maxwell in a red blouse and blue scarf

"I doubt she [my mother] even told my father because my retinas were dying so slowly. And who wants to hear at age 10 you might lose sight when you’re older?”

Sound, stage and sight

By the time Elizabeth had reached young adulthood, the JIA treatment seemed to have been successful. She went to dances accompanied by her older brother and, aged 17, as a keen soprano and pianist, enrolled at the Royal College of Music for part-time weekend tuition.

At 18, she joined full time and, through theatre and singing, met her first husband, a bass-baritone, with whom she moved to Germany when he got a job there.

The marriage lasted only a couple of years (“we were too young”) but Elizabeth loved Europe and her job at British Forces Broadcasting in Cologne. She was a librarian in what was then the largest record library in Europe and was regularly invited to comment on recipes live on air during a cookery show.

Looking back, Elizabeth recognises how these formative experiences and training in music and theatre left her with an assurance that would help her navigate her life as an older adult.

For this reason, she describes Fight for Sight-funded projects like Extant as “fantastic”—the company takes young vision-impaired people for theatre visits and creates dramas about vision impairment.

One moment at the Royal College of Music felt more significant to her later in life - after the sight loss - when a tutor instructed students to make up their faces in total darkness. She says of the class: “Suddenly all the lights went out. We all panicked but the tutor said, ‘the show must go on’. She did it to prepare us for something going wrong before a show. She told us to feel our faces without looking in a mirror - we just carried on, in darkness.”

Elizabeth thinks of this when she applies her “finger lippy”. Swiftly yet gracefully, she uses a single finger to whip a slick of red cream off her lipstick and trace it onto her mouth.

She is grateful for incidents like the detention essay and make up lesson: “I feel so blessed to have had all these experiences that made me who I am now.” 

Inner sight

“Will you please tell me, am I going to lose my sight?”

Elizabeth sat opposite the consultant and asked the question that had been on her mind for years. 

Now in her early 30s, married to her second husband and mother to a toddler son, she was registered partially sighted. She already had severe retinal damage in her left eye and a cataract forming in her right.

“I’d told the doctor, ‘I’m going to ask a question, and I don't want to leave until you tell me the truth.’ There was a pause, and he said, ‘It's more than likely’. And I thanked him because somebody had told me the truth for the first time in my life - I was grateful.”

Acknowledging the possibility of vision loss

No one knew if or when Elizabeth would lose her sight, but acknowledging the possibility was important. She was not worried about preventing or coping with it because “I was still living life to the full, I was married to George, I was a mother - and we didn’t know when this would happen”.

Elizabeth adds she was not shocked because her sight had been fading gradually. She slowly lost the ability to distinguish the colour of flowers, for example, and little by little, shapes looked increasingly blurred. A few years ago, she reflected on this subtle progression in a poem titled Darkness, My Friend. The poem describes darkness creeping up “slowly like the lengthening shadows of evening.”

The sight that was dwindling by the late 1980s, when her son Anthony was a toddler, was completely gone by the time her second son James was born a couple of years later. “So, then I had two children, and it was a question of just getting on with it and adapting to this new way of life, learning how to see in a different way.”

Elizabeth defines “seeing differently” as “seeing from inside out”: “My inner sight has developed over the years; I see everything around me so clearly that I don’t feel I’m missing out. It’s like the difference between hearing and listening, so a fully sighted person sees a rose, but I look at it - I smell it, feel it, feel the prickles - I use all the other senses. Of course, I have a vision of a rose from memory, but to fully appreciate it, I need to hold it, so I'm feeling its shape. I'm seeing with my hands, feeling the softness, the thorns or the weight. I’m taking in the whole beautiful thing.”

Adapting to motherhood because 'the show much go on.'

Elizabeth navigated her role as the mother of two under-fives with practical, intuitive adjustments. Feeding her infant sons, for example, involved spooning the food into their mouths with one hand while using the little finger of the other to gauge where their lips were.

By the time he was four, young Anthony would instinctively reach out to guide his mother when walking: “He’d lift up his right hand and I’d put my hand on his shoulder. We both did it without thinking.”

She says: “We did these things because ‘the show must go on’. There have been moments when I’ve wondered how on earth I’m going to do something. But then the voice in my head says ‘we'll find a way’.”

She has never seen her younger son James’s face because he was born after she lost her sight. “But I knew I'd be able to feel the shape of his face, which is different to Antony’s. And I’d get to know his character. In my mind's eye, I can see him. I know the shape of him, his slender face.”

Despite her glass-half-full approach to life, Elizabeth is candid about occasionally experiencing low moment. Once, when she took the boys to the park and they had run off to play - a regular activity - she was struck by a moment of self-doubt, and began weeping. “I suddenly thought 'I don’t know how to get home without them…how will I find them’. But they came back moments later - as they always did.”

She laughs at the thought of one temporary solution when she attached bells to James’ shoes - she removed the impractical and annoying accessories after a day. The longer-term answer was to train herself to listen to her son running: “Everyone’s gait is different; I learn so much by listening.”

Elizabeth uses the example of accidentally breaking a glass or plate to explain the crucial role of sound in learning to live independently. “If something shatters, listen to how it fell - listen to the pieces scattering. I stand still, maybe the shoe comes off and I very tentatively use my foot, my toes to go as far as I think the pieces have gone. Then I have a pattern in my mind, and I can start clearing up, slowly and carefully.”

Cooking is possible thanks to a compact, well-organised kitchen; everything has a place and distinctive sound: “If I'm pouring water into the cafetière, that’s a specific sound and easy to hear in a small space. I hear when it's full. With cooking, I have to think about what I'm doing and make a plan so everything’s in position and I know how far it is from my talking scales. If I'm pouring liquid into the measuring jug, I use the ridges on the inside to check it’s filled to the right level.”

Family or friends accompany her when she goes out, acting as informal guides. But she uses memory and spatial awareness to leave her flat and step down two flights of stairs.

If she’s going further afield, she relies on a trusted local cab service to walk her to and from the car. And she is alert to noises from the road to signal the direction and proximity of traffic. “I find a way of doing things that may look a bit peculiar, but that’s okay. I’ve got my routines and I’ve adapted to a new way of doing things, and I’ve created my own security.”

Elizabeth says she misses not being able to go out for a walk alone, and the moon “It’s a beautiful thing hanging there quietly - I miss watching the faces of the moon. I miss seeing a rainbow. But it's all in my mind. It's all in here still.”

A common misconception among fully sighted people, she adds, is that she lives in darkness. “But I see dove grey, with an arc of beautiful, warm blue over the top and there’s a Christmas red and daffodil yellow below. I don't know why. Is my brain remembering those colours? Who knows. I'm happy that they're there and it’s been a long time since I've known anything else.”

"I see dove grey with an arc of beautiful, warm blue over the top, and there’s a Christmas red and daffodil yellow below."

Research is hope, fundraising for Fight for Sight

Today, Elizabeth is an experienced volunteer and “phone buddy” for the charity BlindAid, which we have funded. She started to volunteer listening in lockdown and still phones 15 older people on a regular basis once a week, offering an empathic ear and lived shared experience.

Fight for Sight research shows that people who are blind and vision impaired are three times more likely to experience loneliness and isolation.

As Elizabeth says: “Some people become isolated and sad. Those are the people that actually need a bit more help. I enjoy knowing that somebody who needs support is hearing a voice, and we’ve had a conversation.”

A fundraising trek: reaching the summit

Her involvement with Fight for Sight began in the late 1990s when a friend or family member—she cannot remember who exactly—suggested a fundraising trek up Pen y Fan in the Brecon Beacons. Elizabeth, accompanied by a former army veteran friend, trained for six months and navigated shale and some steep inclines to walk to the summit, raising over £4,000. She described the experience as “thrilling and wonderful.”

After that, her fundraising efforts for us “snowballed” into annual cake and chutney sales at various local churches in aid of Fight for Sight. This year she’s aiming to make 25 whiskey-laden Dundee cakes - a speciality - and 40 jars of chutney, along with knitted gifts. One bonus with the latter, says Elizabeth, is that knitting keeps her arthritis at bay.

Her efforts are vital as sight-saving research is desperately underfunded - our 2020 report Time to Focus shows figures show that of the £2.56 billion targeted to health research, only 1.3% was specifically invested in eye research.

Elizabeth describes her fundraising for us and the reasons behind it, as “a great joy”: “Research is hope. It’s wonderful to raise money for an organisation that does researches into different eye conditions with the aim of finding something that might prevent sight loss. There’s a chance of a discovery that’s going to help somebody either deal better with their sight loss, or maybe prevent it. And along with that there’s a huge need for people to be supported in very practical ways, which Fight for Sight does too.”

Join our webinar and discover how our funding could help prevent vision loss in future generations. 

Predicting and diagnosing sight loss in children
Dr Lola Solebo stands outside looking u at the sky. She is bathed in sunlight.

Looking to the future: Research is hope

With her 80th birthday on the horizon, Elizabeth says she cannot wait to celebrate in 2025 with a series of events with friends and family. “My mother was 94 when she passed away, so I'm determined to be 95 before I finish my days.”

She adds: “How do I feel about my sight loss now? I'm at peace with myself. I'm at peace in myself. I know it's not going to change, so I've totally accepted that. I'm never miserable about it because what’s the point? So, okay, I can't fry chips anymore. So what? Thank goodness for frozen chips! So maybe you find you can't do that. But to be able to do this instead. There's always a way.”

The advice she might offer her younger would - characteristically - be practical: “I’d probably say, it's going to be all right, you'll manage. You have some basic skills, and thanks to the stage work and college, you’ll adapt accordingly.”

For anyone facing a similar experience to the one she has had, she has only positive words: “There are wonderful organisations like Fight for Sight doing research. There’s help with technology; you’ll learn different skills, you’ll learn how to interact with people and you may have mobility training. You won’t necessarily use lose your independence.”

Pragmatism with a generous dash of optimism has enabled Elizabeth Maxwell to adapt and adjust to live a full, busy, successful life - while supporting others along the way. “I'd always answer a doubtful thought with something positive,” she says, “part of me doesn’t want to be defeated by anything”.

"Research is hope. It’s wonderful to raise money for an organisation that does research into different eye conditions with the aim of finding something that might prevent sight loss."

Lizzie Maxwell Chutney maker and master baker
Research strategy

Related content

Charmaine, a white woman with short brown hair and wearing a pink button down shirt, sits on a blue sofa and leans on a table. She's smiling at the camera.
Your Stories
Charmaine: Audio description and our quest for an inclusive society
Charmaine: Audio description and our quest for an inclusive society
Headshot of Monica Smith
Your Stories
"My name is Monica - I am a daughter, a mother, a charity fundraiser and a champion tennis player. In addition, I am blind."
A day in the life of Monica
Charmaine, a white woman with short brown hair is snuggled up with her two daughters on a sofa. The girls are looking at the camera shyly, Charmaine is smiling proudly at her daughter who is sitting to her right.
Your Stories
Charmaine's story: "You're only disabled by your environment"
Charmaine's story: "You're only disabled by your environment"
  • Childhood condition
  • Theatrical adventures
  • A realisation of vision loss
  • Living with vision loss
  • Fundraising for us