When I was four years old, many years ago now, there was a fire at my house. My brother and I were playing with matches, one thing led to another and a burning match got onto the sofa. In those days there were no fire retardant foams like there is today. It took only a few seconds for the whole thing to be ablaze. Not long after it spread to the rest of the house. My mum got out by climbing out of the bathroom window onto the roof of the coal house.
I got out through the front door which was left unlocked. I can still see it so clearly in my mind after all these years. The last thing I remember was grabbing my brother, Robin, and running for the door; he pulled away and ran behind the chair because he said that the fire would not get him there. Both he and my sister, Tracy, died in that fire.
With all the heartache and stress of losing two children, my mum’s eyesight was to suffer. Within a few weeks she began to see rings around the lights, at that point they took her into hospital for further tests, she was diagnosed with acute glaucoma, there is no cure for it. The doctors told her she had a 50% chance they could save her sight. They manged to slow it, but it took half her sight and left her with limited vision and dependent on eye drops for the rest of her life.
She was 30 years old at the time of diagnosis and she was 73 when she died just over 18 months ago now. Her passing came as a huge blow because of all that we had been through together. When I was five I fell through a window and cut both my wrists to the bone, I was in hospital six months and another 18 months after that in rehabilitation learning how to use my hands again. The surgeons did a fine job considering the damage, but to this day I don’t have full dexterity in both hands and limited grip in my left hand, my mum saved me by sticking her thumbs inside my wrists and holding the arteries shut until we got to the hospital.
When I was 13, I began to suffer the same as my mum. I lost the vision in my left eye and a year later they found out that I had glaucoma, as well as keratoconus. I lost the top half of my peripheral vision, so when I look at the ground I can’t see above, not good when you are 6ft 4.
My mum and me have always been close and went everywhere together, until I met Angela and I moved into my own flat. In the end my mum struggled to remember my name, but she passed away knowing that I was not alone. She knew of our plans for Angela and me to get married and was happy about it. All I have left of my mum now is a very grumpy old dog named Sam.
Since Angela’s diagnosis, I have noticed some changes in my vision. I go to the hospital every six months for a check up on my vision and they have increased my drops, which I am on for the rest of my life, to three times a day to try to counteract the pressure. The hospital have referred me to see a grief councillor because of the stress of losing my mum and Angela’s diagnosis of MND being so close together…