Brilliant Bucket List

A while ago I wrote a blog about what you would want to see if you knew you were going to go blind.

Now imagine writing that list if you were only six. That is exactly what six year old Molly Bent from Manchester has done and it is way better than any I have thought of:

Disney

London

See the Queen’s palace.

Natural History Museum.

Blackpool.

Scotland.

Aquarium.

Safari Park.

Legoland.

Beach.

Museums.

Theatre Trip.

Concerts.

Australia.

Football match.

Isn’t this a brilliant list! It really made me smile and also reminded me, on a day when I was having a slight melancholy moment, how lucky I am. There are only two things from Molly’s list that I have not seen so, probably to the delight of my two daughters when they find out, I am prioritising Legoland and Disney!

I really hope you get to tick them all of the list Molly and if anybody wants to help Molly her fund-raising page is http://www.gofundme.com/makingmollysmemories and you can read more about her at
http://www.dailymail.co.uk/news/article-2602239/Girl-6-going-blind-incurable-genetic-condition-compiles-touching-bucket-list-loses-sight.html

My elder daughter

I have written before about the issues of whether my daughters have Ushers/RP and, touch wood, it would seem they have not. But, that is not to say that it does not affect them. It does, because I have it.

My younger daughter is currently struggling with learning that she cannot walk in front of me when we are out and about because she is very short, out of my sight line and I will just trip her over. Unfortunately, occasionally, she is having to learn the hard way by me actually walking into her because she is, in her own wonderfully determined way, taking a while to learn that it is not being said to make her life harder but to make it easier! She will get it and she is already way more aware of where I am compared to the average toddler.

My elder daughter though has being living with this for much longer. She is seven now. And she is really aware of my sight limitations and has a caring and understanding that is way beyond her years. Somehow she has always been aware and from a young age has pointed things out in dark places when I am being a bit slow, like car door handles, or picked things up off the floor when she can see I am staring around the floor trying to locate something I have dropped. Being a child she has no adult awkwardness or clumsy politeness about things she just says it how it is – “Daddy can’t see very well in the dark” – “where’s your stick Daddy” – “It’s there Daddy can’t you see!”. She even said to me at the end of one trip out – “that was great Daddy you didn’t bump into anybody at all”.

She is truly amazing, in many, many ways and this understanding and caring side is just one of them. But I do have a concern because I would never want her to feel responsible for me or to feel that any limitations I may have mean that she is limited. All parents have these sort of concerns for different reasons. All parents want the best for their children. I am determined that my visual impairment will never be her problem but I am incredibly proud of her.

The sound of music

There is a story that has rightly captured the imaginations of thousands. It is the story of Joanne Milne. Joanne also has Ushers syndrome. Unlike me she has been completely deaf since birth so hearing aids were never going to work for her.

This year, at the age of 39, she had a cochlear implant which meant she could hear for the first time. The video of her reaction to the implant being turned on has gone viral. It is a concept that most of us could not begin to imagine. Sound for the first time after nearly four decades of silence.

As well as people being touched by her emotional reaction there has been an added element to the story which is her friend’s compilation tape. Her friend, Tremayne Crossley, had the huge responsibility of making a playlist for her to listen to. A playlist for a person who has never heard music. He chose to go with a track from each year of her life which is brilliant and I have had to look at the playlist myself.

It got me thinking, as I believe it has for many, about how I would have approached such a playlist. So many ways, so many possibilities – such a responsibility. Having young daughters it got me thinking about how a child’s approach and taste to songs develops. So I think my playlist would have been one song for each year of Joanne’s life but based on her age. So it would have start with Rock a bye baby, then twinkle twinkle little star, then baa baa black sheep, and so on. On the downside, unlike Tremayne’s playlist, I couldn’t see Joanne playing mine more than once and I seriously doubt that BBC Radio 6 would feature my playlist!

See the moment Joanne heard for the first time yourself:

http://www.bbc.co.uk/news/uk-england-tyne-26779079

Never a truer word

Inspirational words from Katey Duppong which all people with RP should live their lives by:

“I have a timer clicking away the days I have left to see, and I never want to regret not giving it my all.”

Missing mouth – RP or dopey

I seem to miss my mouth these days. Not in the sense that it has gone but in the sense that when I drink a glass of water or put a fork of food into my mouth I often miss my actual mouth and hit my chin or upper lip. Is this to do with RP? I don’t remember when I had full vision that I used my peripheral vision to watch where my glass or my fork was in relation to my mouth but maybe it is something I did subconsciously or maybe I am just becoming dopey!

Bad timing for bad news

Because my eyesight can stay constant for quite long periods, many months, it can make you complacent and sometimes you temporarily forget the degenerative nature and the fact that you inevitably are going to have make adjustments again.

This year has been one of the busiest at work I have known for a long time which has meant nose to the grindstone and not much time to dwell on your own issues. Unfortunately for me it has also coincided with the realisation that my eyesight has again got worst. I have not been to have my field of vision measured. I can’t see the point of that, but you know when it has got worst. You walk into a door frame you know and that you previously would not have done. You knock over a drink even though you have carefully placed it in the same area that have for the last 12 months. You realise that you can see even less of part of the computer screen than you could before.

But with a degenerative condition, where no one on the outside world knows there has been a change, you just have to deal with this as life, and life’s demands, continues. This is no different to the last 20 odd years since my eyesight started going so you would have thought I was used to it by now but there is never a good time for this to happen. Like everybody life is busy, demanding and in many ways unforgiving. There is barely enough time to do all the mundane chores that need to be done let alone take time out to be self absorbed.

I think it is probably healthy this way. I am not sure that taking time out to reflect or “get your head round it” would do me any good. What is there to say or think that has not already been said or thought? So actually I am grateful I have a full and busy life as it forces you to deal with things quickly and to look outwards to the world and those around you rather than to become self-absorbed.

Having said that, human nature (and my nature particularly) being what it is I suspect, well actually I know, that dealing with it on the go can make me irritable and grumpy sometimes. So to those around me – sorry for the last few months and normal service is now resumed!

RP Anonymous

I recently decided to get involved in a local charity for visually impaired people. How this came about is all a bit random but basically I noticed that they were doing a charity event in the city I work in which prompted me to look at their website and by chance I noticed they were looking for trustees.

I am not saying I would be much use as trustee but in theory I am a professionally qualified person and I have a visual impairment so on some level I thought I might qualify and potentially be useful. I hoped that it would give me an opportunity to get involved with a charity supporting people with visual impairment. Something that I have an obvious empathy with.

Anyway the reason for telling you this has very little to do with the charity and is really about the trustee selection process. When I volunteered to be a trustee I had assumed that as they were advertising for them they must be short of volunteers. Far from it! They had six volunteers for three trustee places and there had to be an election by the members.

Well that was shock number one but was nothing like as bad as shock number two. I would have to give a speech at the AGM as to why I wanted to be a trustee. When the CEO said this I just smiled and said fine but, inside, I was petrified. It was not the idea of public speaking which, although not my favourite thing at all, is something I occasionally have to do for work so I can psyche myself up for that. No it was how did I explain why I wanted to be a trustee without saying that I was visually impaired – without saying that I was blind.

I am sure this sounds really dumb to you. You use a stick so of course you’re visually impaired and people will see that. The reality is that I am blind so what’s the problem with the saying it. The thing is though that although I have told people on a one to one basis, or even as a small group in an office context, they have always been people I know. Even if only superficially. I have never stood up in front of a room full of strangers and said it out loud. There is a big difference – to me.

On the day I am sure you could have heard my heart beating from a hundred metres away. To be honest to call what I had to do “a speech” is over stating it considerably. It only had to last a couple of minutes and was basically a who are you, what do you do and why do you want to be a trustee.

I don’t remember what I said apart from saying “my name is and I am visually impaired. I was registered blind in 2008”. It just reminded me of the AA meetings you see on the television. My name is and I am an alcoholic. But, to be honest if in AA meetings they use that as part of the therapy then I can understand that because although the whole thought of doing it petrified me actually it felt good saying it. Really good.

Overconfident?

The last few posts have been fairly upbeat. I like to think I am generally the glass is half full kind of guy but there are occasions when you can be reminded of your limits in a very blunt fashion.

On another recent camping trip, by the way from reading this blog you would think I am an avid camping fan – I really am not and before this year I don’t think I had been camping for about 8 years, anyway back to the camping trip. There was a loo block at the corner of the field through some gates and I really thought I had mapped out the campsite in my mind with pretty good accuracy. I knew where the main path was and the same for the tents, hedges and gates.

So when it was late in the evening, dark, sitting around the camp fire and the call of nature arrived I was full of general over confidence and dutch courage so thought I would have no problem finding the loo block on my own with no stick and no torch. What an idiot!

I actually made it to the corner of the field without incident but then lost my concentration. I turned around and realised I could not see a thing and had no idea which direction the loo block or the camp fire were.

I knew there were other tents around because I could hear people. I also knew there were therefore endless guide lines around for me to trip over and I would not be thanked for bringing somebody’s tent down in the middle of the night. I knew the only way I was going to find my way out was on all fours slowly feeling my way. Not only was not knowing where I was slightly panicking me I also knew that I was going to be visible to other campers when I started crawling – I was going to look seriously odd! For some reason, and I do not understand my own logic here, I thought that if I made noises like a pig then people might think I was on a bet or a forfeit for a drinking game I had lost. So that is what I did I crawled on all fours making a noise like a pig until I found the main path which I then stood up for and followed back to the direction of the camp fire. Although obviously I walked straight past it only finding it by the shouts.

The next morning in the cold light of day I realised that I had been really stupid trying to do it by myself and I also could not look the other campers on the site in the eye because I did not know which ones had seen me crawling around in the dark making a noise like a pig!

Winter camp finally…..

If you have read my first few posts you will know that the trigger for me using a cane was a winter camp. This is a strange concept of men camping in winter (January) and doing a pub crawl across the fields between a few pubs. I had chickened out the year before because I couldn’t bring myself to tell anyone about my lack of sight and couldn’t see how I was going to mange the pub crawl bit because the last leg would be in the dark. Well this year I went and in terms of the walk in the dark it was a great sense of achievement. I did fall in the ditch at one point but I actually blame the beer for that and not being blind! It would not have been possible without an old neighbour friend of mine. He is one of life’s true gents. I had told him about my sight a few weeks before the camp and in a typical understated way he didn’t make much comment but on the day he stayed with me on the entire walk in the dark. That coupled with a head-torch and two other torches got me there although to be honest it was the blind faith I was putting in him that really made it possible. Ironically I could have got out of the dark section of the walk without losing face because one guy got such bad blisters he got a lift back to the campsite in a car and I could have gone with him. But by that point I was so full of bravado to myself that I was going to do this and it was not going to beat me (amazing stuff beer!) that I actually wanted to do it. It wouldn’t have worked though without my old neighbour. I am really grateful to him because it was a great sense of achievement to walk, with the rest of them, several miles through the dark, not something I thought would have been possible twelve months earlier.