Granny, when are you going to die?

This was the question I asked my Granny when I was 5 years old because I just wanted her to go away and let me get back to playing ... I didn't realise then how lucky I would be that she didn't die right there, right then but lived for another 24 years, to a great age of 98!

The reason for this is because when I was 3 years old, it was noticed that even though I was a lovely quiet child (so I am told!), I actually couldn't hear properly and subsequently had to get hearing aids. I was also lucky enough to be able to start school even though I had missed out in the first few and important years of learning to hear and talk like all the other kids in my class when I started national school at 5 years of age.

It was for this reason, that I was to go to my grandmothers house everyday after school to do my homework, and Granny, being a retired school teacher, did extra work with me with my reading and speech. It was the first day at her house that I hid behind the big armchair in her sitting room and she peered over the top saying, "Patrick, when are you going to come out from there?" to which, you guessed it, I replied, "Granny, when are you going to die?"

I owe a lot to my grandmother for all the after school care she gave me, it brought me on along greatly and very quickly. Other than the fact I wore hearing aids, I was like any other of the kids in the class.

Years later, when I was 15, I suffered a detached retina in my left eye, and the late Mr Peter Barry FRCS, successfully saved the sight in my eye and while I was only out of school for a couple of months, life returned to normal.

Roll on another few years, I noticed that my vision wasn't what it used to be, it was little things, not seeing very well at night or in the dark, bumping into the coffee table in the sitting room but I just assumed it was because I had had an operation, that was the reason.

My doctor sent me to the Eye and Ear hospital to do some tests and they told me the news ... that I had Ushers Syndrome. I'll never forget that day, I wasn't expecting it, I couldn't take it in, I was devastated, my family were devastated. Usher Syndrome is a combination of the hearing loss, and RP (Retinitis Pigmentosa) which is a genetic disease which causes the gradual, slow loss of eyesight and complete night blindness. There is no cure for RP and today I have about less than 5 degrees of useful central vision, it's like looking through a straw.

The slow deterioration of RP is like watching a snail cross the room, you see it, but it doesn't look like it's moving (getting worse), but you look back at it every so often and then you see that it has moved.

The internet was only starting those days, I had no access to it but some friends had and found out some information about Ushers and RP. Apparently, the average age of when one would go legally blind was 40 it read. I was 26, ok, I've a few years to deal with this I thought, and then at 29, I was declared legally blind. It was tough.

The hardest part of being blind or visually impaired is losing your independence, not being able to go where you want when you want to, always having to rely on other people to get around and do things. C'est la vie, I have no choice to but to just get on with it and be thankful for having good family and friends around me. The other bizarre thing I find, is that I still think like a sighted person, I might say to myself, yeah, I can do that and picture myself doing it with ease and then when I try it, reality kicks in, I can't do it, I can't see enough.

I use a cane to get around, for me it's more to make other people aware that I can't see too well (get out of the way!). I remember when I first started using the cane, a man, who I knew, came up to me and said, "I see you are using a cane and I am sorry for you, but it makes sense now."

"Why, what do you mean?" I asked interestedly.

He replied, "I used to always think there was either something wrong with your leg or maybe you were a bit drunk, but when I see you walk with the cane now, you are walking properly, there's nothing wrong with you other that you just can't see too well."

A lovely, honest man, he didn't realise how powerful his honesty meant to me and from that day going forward, I didn't mind using the cane anymore.

At worst today, if I bump into someone I know on the street, I can sometimes recognise them but other times, I need to hear their voice in order to confirm who I think it is. Some people will say their name to me straight away, which helps greatly.

I work in the family business at Merlin Car Auctions, and the team there are great and very understanding. You'll often hear me asking "can I borrow your eyes for a minute please?" It's important to be able to ask for help, I don't ask often enough for it but I realise that if I do, people are only too happy to help.

Sight wise, I don't know what the future holds for me. There is great work being done all around the world, great advances but nothing just yet to get a call from a doctor to say, "come in, we have a fix for you."

The reason I am telling you all of this is because at the start of this year, I set myself a really big challenge, one that would take me right out of my comfort zone, one that required a lot of work and determination and that is to walk the Dublin Marathon on the 28th October this year. For those of you who don't know me, I don't do sports, I work a desk job, so exercise and fitness are not necessarily my best friends, so you can appreciate how big this challenge is for me, along with the disadvantage of not being able to see too well!

I have chosen Fighting Blindness for the charity I would like to support, they are an Irish, patient-led charity with a vision to cure blindness, support those experiencing sight loss and empower patients.

If you could sponsor me, no matter how little, I would really appreciate it very much!

Please go to www.justgiving.com/fundraising/patrickoreilly

More importantly, if you see me walking on the day, give me a big cheer, so at least I know I am going in the right direction and an even bigger cheer so I know I've crossed the finish line!!

Thank you!

Patrick

PS If you could share this post, that would be really cool, as I will know then that you read to the very end!!!

#FightingBlindness #DublinMarathon