"Through every bit of darkness, there is some light"

A heartbreaking diagnosis

“I didn't really notice anything was wrong. This is going back about 30 years; I had an eye test and the optician said to me, “You must go to the eye clinic immediately.”

He never told me why. I went to my GP and was referred to the local eye clinic. And again, I was never told what I had, or what, if anything, I could do. I suppose I was a bit naïive. I should have pushed for more information, but I was young and didn’t know what I could have done.

Life carried on – work, family – and over time, I forgot all about it. Until I hit my 50s. I had some visual distortion and just felt that something wasn’t right. By then I had a different optician who knew all about macular disease. I was finally diagnosed with myopic macular degeneration.

Dark days

I went into a very bad depression. I'm sure many people do when they’re told they have a life-changing condition.

I carried on working, but the support I received was patchy at best and inconsiderate. My colleagues, friends and family didn’t understand why I couldn’t see their faces, but I could see a mark on the floor. I didn’t understand it either. I tried to carry on as normal. But my goodness it was hard. I felt isolated, depressed and that my life was over.

They were sad and dark days for me.

Finding support

I was put in touch with the Macular Society and I did ring them. The voice was kind and so compassionate. It lifted my spirits a little, but a voice at the other end of the telephone wasn’t going to give me my life back. I felt a little less isolated, but I refused any help. I didn’t want to get involved with the support groups. I was in complete denial really and I couldn’t bear the thought of socialising with anybody either.

But as the days passed, I began to realise that being negative and depressed wasn’t going to get me anywhere. I was offered early retirement, and I grabbed it with both hands.

I was going to begin a new chapter of my life.

Life-changing support

I decided to join a Macular Society support group after all. ‘What's wrong with talking to people?’ I thought. And what I found was a group of people who were really quite jolly and joyous. We didn't sit and bemoan our problems. We supported each other. We were all at different stages of macular disease, all different ages, and the little bits of advice were very, very helpful.

Starting a new support group

When we moved a few years ago, I thought there must be a support group locally but there wasn’t, so I asked the Macular Society to support me in starting one. We celebrated our second birthday in June.

It’s such a wonderful group. It's the camaraderie, isn't it? Though we might suffer with the same thing, we're all just human beings, trying to get on in life. They mean the world to me, my macular group. I would do anything for any of them.

Hope for a cure

There is light on the horizon for us, for people with macular disease.

Research is very, very important. I've put myself down for clinical trials. I'll do anything. I don't know if it will benefit me, but those who come along behind me I’m sure will benefit greatly.

Research must keep being funded. I want to know that in the coming years, something will be available and in a decade people with our condition won’t have to suffer anymore. And if I’m still around, I’ll be so happy.

Courage to shine

Looking back at those early years, I was so scared and depressed. I find that I’m a much-changed person today.

I love gardening. I don't know what I'm doing. I pull up plants and there were times when that would upset me even more, but I go to the group and I say, 'oh, I think I've pulled up a whole bunch of daffodils, I didn't know what they were.' Someone will say, 'yes, I've done the same.’ And we just laugh about it, knowing that we're not alone in these things.

Nobody should go through this alone and miserable.

We've lost something, but we must try not to grieve about it till the day we die. We have to find different ways to live and that requires great courage. The longer you sit in the dark, the harder it is to put the light on, isn't it? Because you can get used to the gloom. But through every bit of darkness, there is some light.

Shine out. Be courageous, be strong. You can do it. We can all do it.”