When words disappeared from the page… Jo’s sight loss journey

Post date: 
Tuesday, 3 October 2017
Image shows Jo smiling with a circus tent in the background

Community member Jo Young lost her sight at age 42, but was able to rebuild her life and continue working with the crucial support of others. She shares her inspiring story here.

One evening I was reading a book in bed and suddenly entire words disappeared from the page. I was absolutely terrified. I opened and closed my eyes several times to try and focus, hoping desperately that the words would reappear. Unfortunately, they didn’t. I put the book down and closed my eyes.

With lots of thoughts spinning through my head, I didn’t sleep at all that night. This was the start of my sight loss journey.

The next day I contacted a friend who worked at the local opticians and she asked me to come down to see her straight away. The optician was very interested in what I had to say and took lots of photographs. He explained to me that what he saw was similar to something he had previously seen in a person much older than me. He referred me (armed with photographs) to a local hospital specialising in vision.

Being diagnosed

The consultant I saw could not give my condition a name, but told me it was a rare type of macular dystrophy, or maybe Best disease, but he wasn’t sure of the path it would take as it was so rare. I was also referred by my GP to Moorfields Eye Hospital, who again confirmed my condition was rare. It was agreed that I was to be monitored by Moorfields every six months, but in the meantime I should continue to see the consultant at my local hospital.

I got in touch with the Macular Society to try and find out more about my condition. I found them to be very helpful; they advised me of a consultant at Manchester Royal Infirmary that specialised in macular degeneration.

Everyone knew that my condition would worsen but to what extent, nobody knew.

With my future so uncertain, I had lots of anxiety and went through a spell of depression, feeling very hopeless and most of all sorry for myself. I had to surrender my driving licence which I found really difficult. I felt alone and that no one really understood what I was going through. Friends and family were fantastic and offered help at any given opportunity, but I found it difficult to accept as I felt like a burden to them.

Learning to live again

I contacted RNIB in desperation one day, and it was the best thing I could have done. They offered me lots of practical and emotional support. Practically, I had an assessment through Access to Work, to help to keep me in employment. I loved my job, it gave me the purpose to get up and carry on through my dark days, so I desperately wanted to keep it. The assessment was carried out and I got the support I needed to enable me to continue in the same role.

As I’m largely office-based and spend a lot of my time on the computer, the equipment I needed to continue working included a large monitor, the ZoomText program and an electronic magnifier. They also arranged transportation to and from work, which I found invaluable.

Emotionally, I was offered counselling. I never thought this would help me, but I reluctantly agreed to attend. I went to weekly one hour sessions and this again turned out to be the best thing I could have done. Talking to someone who didn’t know me meant I could be completely open and honest.

Friends and family seemed too close at the time, and I didn’t want to admit to them how much I was suffering on the inside.

I am pleased to say I have now learned to live with the condition, which has been a massive step for me. It took a long time for me to accept and although it is not life threatening, it has been difficult for me to understand that life can and does go on.

Keeping the job I love

Ten years on, and I’m still doing the same job I love for Circus Starr, which is a not-for-profit UK touring circus for disadvantaged and disabled children and their families. I run the box office, which involves researching the communities we tour and allocating approximately 75,000 tickets through a network of special schools, local charities and support groups - receiving daily feedback from members of our audience is one of the job’s perks.

The Circus travels to 75 venues nationwide each year. We pride ourselves on being inclusive and this is something I feel very passionate about. I have had the pleasure of being involved and seeing first-hand what a difference the audio-described performances can make at our shows. Being completely honest, I didn’t think the audio description would be of much benefit to me as I have peripheral vision (but no central vision), however, the experience I had was amazing.

The audio describer was very informative, explaining in great detail what was happening. I would advise anyone who doesn’t think they would benefit from or enjoy audio description to give it a go.

Without the support of family, friends and RNIB, I wouldn’t be where I am today. If you’ve just lost your sight and are worried about your future – you’re not alone. Don’t be afraid to ask for help.


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