Looking out for mother


Kate Hilpern
Sunday 01 August 1999 23:02


I was put on Valium at nine years old. I'd complained to my parents that I sometimes couldn't see, but my doctor had never heard of retinitis pigmentosa - a serious deterioration of the retina - which I later found out I'd got. "There's nothing wrong with your sight," he concluded. My dreadful fear and horrendous headaches were put down to nerves. School was particularly awful. I couldn't see enough to work and I felt isolated.

Then when I married and had three kids, I developed night blindness, tunnel vision and lost sight in my left eye completely. I used to walk into my children and I'd fall over toys and knock over cups. People used to say my house looked like the Blackpool illuminations because I'd use 150-watt light-bulbs.

Nevertheless, I kept my sadness and worry hidden because I didn't want my children to suffer. It was only when they were at school that I'd sometimes weep, thinking, "What am I going to do?" My husband thought I was lying and mothers would scream at me in the street because I walked straight into their children. I took to riding a bicycle because people avoid bicycles.

Finally, in 1973, after seeing a series of unhelpful doctors, I travelled to Manchester for an appointment with the best eye specialist in the country. For the first time, my impairment was acknowledged.

Although my parents and my husband thought it would give me an excuse to stop doing anything, it had the opposite effect. I became more positive than ever and determined to cope with being a mum, a home help, a cleaner and running a livery yard. I still wasn't offered any external help, however, which I think is why - in many ways - my children became my eyes. I don't think they thought about it like that, though, which was what made it so nice. It was just very natural, even amusing at times, and we became very close as a result. They helped with everyday things, with the horses, and Nichola used to assist me with my cleaning job.

By 1985, however, my sight had almost gone completely and I'd turned to Valium to cope. One time when I went to get my prescription, my GP was absent. The substitute said, "Why on earth do you take Valium?" I burst into tears and said, "I can't see." He couldn't believe that I didn't have external help and arranged for me to have a mobility officer. I had long-cane training which changed my life immediately. But it horrified my husband. Two months later, he moved out.

Two of my kids had moved out by then too, which left Nichola and me. Still just a teenager, she was brilliant and got a job in a factory to keep us. We had to fold the livery yard, though, and I lost the cleaning job because they said a blind person was a fire hazard. But I refused to be beaten. I went to the Royal National Institute for the Blind college and got some work with the RNIB, where I still am. When Nichola felt sure I could cope alone, she moved in with her boyfriend.

I don't think I'll ever come to terms with my blindness. I feel angry at the lack of services available which could have made such a difference to my life. Everyone is geared to wheelchair users, but not to people with sensory impairments. Sometimes people even treat me like I'm stupid. I also feel frustrated at having to wait days to know what's in the post or what I'm cooking. That said, I do love my life and make sure I do everything I possibly can, like ride horses. I also make sure I can laugh through life. The other day, I'd guessed incorrectly how to make some pancakes for Nichola's kids and one of them said, "Granny, they look like lead."


I can honestly say that mum's blindness didn't have a negative effect on my childhood - quite the contrary. She instilled in her children such a strong sense of being able to overcome anything and remain positive, that we grew up feeling there was nothing we couldn't conquer. I still approach life like that.

I suppose, when I think about it, we did do more for our mother than other children do - such as guiding her, and helping her out with jobs when we were older. But it certainly never felt like a chore. I've passed that way of dealing with it on to my six-year-old twins. If they want to show her a picture, they won't get frustrated or think, "What's the point?" They'll take her finger and trace it all round the outlines, describing it in detail. Likewise, if they're helping her with the shopping, they'll calmly tell her which tin is cat food and which is baked beans.

I know now, of course, that mum had a great deal of unhappiness about her impairment while we were growing up. I can certainly remember the rows between her and dad when he would accuse her of lying. But she rarely let her unhappiness show around us.

Maybe, because her children were the only people in her life who seemed to completely accept her blindness and not be negative about it, she felt it wasn't such a problem when she was with us.

When we became teenagers and her eyesight deteriorated more than ever, however, that did change. It was so worrying for us to see her on Valium and I can think of at least one time when she took herself off and we didn't know where she had gone. I think she felt desperate and simply couldn't hide it any longer. Dad leaving home was the last straw. I'd always felt dependent on mum and suddenly the tables were turned.

She needed a huge amount of moral and practical support and, without money coming in, she needed financial support. It all hit me quite hard. I didn't know what to do. But her persistence in not letting the blindness take over her life enabled us both to get through it.

Today, she's back to being the independent woman of our childhood but without the hidden emotions. If she feels angry or sad, she'll let on. I do as well, especially when people in the street address me rather than her. I just say to them, rather abruptly, "Why don't you ask her? She can speak for herself, you know."

The RNIB helpline offers information, support and advice for anyone with a serious sight problem: 0345 669999

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