Tag Archive for shadows

Would you be my eyes?

Watching a film earlier today with an additional audio descript soundtrack; my son asked me

What does blue look like if you can’t see?

A question that made me think, I asked him what he thinks of when he thinks of the colour blue, to me it is the sky, the sea and swimming pools.

But mum, what if you had never seen before? What would blue look like?

And so I decided to write this post, I couldn’t answer my sons questions; but I have told him I will, I just need to do a little research first !!

For as long as the written word has existed there have been ways of evoking images from it.

Abjectives, Verbs, Nouns, connotation, yet these all rely on you knowing what such objects look like. In my research of this subject I have found something, something that was buried at the back of my brain with all of my other Secondary Educational learnings;  Pathetic fallacy – where the weather in the story or written word mirrors the emotion of the scene or the people in it. For example, when it is very hot the characters are agitated or when it is foggy, mystery is evoked. This is used to adds atmosphere to the writing and gives clues to the reader as to what is to come, especially if the weather is described before the event.  Just as many horror movies occur on dark stormy nights.

Do you need to know what weather looks like to understand it?

No, as someone who enjoys every type of weather and the changing seasons this is one element of life that I can use my other senses to understand.  Weather can be truly ‘FELT’ the hot sun on my skin, the drizzly rain, the north-easterly breeze.  Fog comes with the additional sounds of fog horns (living on this coast these can be heard miles in land) Mist gives a dampness to the air that isn’t present when it rains, morning dew has a smell to it, a storm too can have its very own smell and it’s not just thunder that makes a noise.

Weather can’t explain colour or shape though, although it works very well for emotion.

So, I am back at the beginning.

How would you describe the colour blue?  Without using the word, what does blue look like?

I have had sight and I have been fortunate to be able to see and remember colours, images, items.

Even though now my perception of colour is greatly altered, I can only really see the difference between orange and red when they are together and everything I see has a kind of haze or veil over it, so isn’t as vivid or true as it once were.

My hunt for answering my sons questions will continue, but for now; humour me?

Please reply to this blog post with your description of the colour blue.

No judgement will be passed, no humiliation with be sort.  Just an intriguing mind looking for help.

Thank You x

Fun with Fizz

Today we (me & Fizz) found ourselves faced with a very different challenge.

Our local coop currently has one of its outer shutters down, so we have a slightly odd turn at the top of the steps by the door.  The door is set at a 45* degree angle to the corner of the building, meaning that when both shutters are down, the building looks square, yet with them both open, you can access from either side through the same entrance. (With one down, we have to walk around to the other, which isn’t at all an issue of difficult to do)

So, we did the turn & Fizz stopped dead and sat down.  This is a very odd thing for her to do.

She doesn’t just sit down like this if there is an obstacle, if there were an obstacle she would remain standing and then guide me around.  If she couldn’t guide me around it, she would turn me around to indicate the way was blocked.

Today she just sat, nothing would move her!

I focused in on a bull dog type dog sat by the railings a little way up, it’s tail was wagging and it wasn’t barking.

This is normally all the invitation Fizz would need to rush me over to say hello; yet she still sat.  So it wasn’t the dog!
Maybe it was a bike laid on the ground, I scanned but saw nothing….

A man came out the shop but before I could ask him, he rushed past and away.

Curious !!
Then out came a lady with a trolley and my mystery was solved

sorry dear, my cat has come out for a walk with me and my dog, he is sitting between you and the door.

So I scanned, I was able to work out another animal, about the same size as the bull dog and also similar colouring.

It was a cat!

It was a very HUGE cat, and he was happily sitting licking his paw with his tail wagging, just like the dog !!
Knowing now the situation I asked Fizz to walk on; nothing!

She did move eventually, but only then cower behind me until the cat had walked past !!

My clever.  Highly trained.  Intelligent. Problem solving guide dog is officially a WIMP.

Where would a blindie be without an Iphone?

As my sight has deteriorated, the brightness, font size and contrast have all increased on my phone. Now Siri has become my best friend and now that I have turned on the voice over, my phone is even more accessible than ever.

I have also found the camera to a fabulous addition to my life. It has enabled me to take numerous pictures of my children playing, birds flying, animals on a farm and today a squirrel. I have found that so far in the summer holidays I have taken nearly 100 photos a time when we have been out and about. Not because I am boring everyone on Facebook with what I have been doing. But so that I can see what the children have been doing, for example when they are playing on the swings in the park. Or when they are feeding a goat at the farm. These are just photos for me, many of them get deleted, but it means that I can watch them later or even use the zoom feature to watch them or check on them while they are running around.

Some people curse smart phones and Iphones, but for me having all these features with me enhances my independence not only with my children, but when I am shopping. I used the camera just yesterday to take an image of a shelf price that I couldn’t read. Because with magnification and holding at the right level, I can read it.

I can’t live without mine now. It is a way of communicating with friends and family, my Sat Nav, CCTV, document reader and so much more.

Insight in to the future – I didn’t like it

Yesterday morning I ran out of hayfever tablets, and it wasn’t until getting ready to go to bed after my eyes had felt ‘scratchy’ all evening that I remembered. But within few short minutes it was too late.

The damage was done and there was absolutely nothing I could do.

My eyes started to weep a sticky kind of tear, my eye lids swelled and involuntarily my eyes were closed.

Painfully so, too the point that I had to physically pull them open to try to put drops in, but the pain was so great I gave up on that idea.

All of this is down to my hay-fever, not my eye condition. So I wasn’t overly concerned.

But I wasn’t prepared for what happened and how what followed made me feel.

Not being able to put the eye drops in, the only other option was sleep or try too.

But to get to bed, I first had to turn off the lights and ‘close-up’ the house for the night.

I can and often do walk around my house without the lights on and I know where everything is … Well, maybe apart from the odd toy, or worse a large dog smoked bone !!

But, this was very different.

If I close my eyes when all the lights are on, I can still see the brightness from the lights through my eyelids.

And this was exactly what it was like last night, only because of the swelling and pain, I couldn’t just open my eyes a see the shapes of the lights.

This brightness was very uncomfortable, and more upsetting than I though possible.

Walking around the house turning off the lights was something that physically I could do, but emotionally it was heart breaking.

It wasn’t until the house was in complete darkness that I was able to feel calm again.

There is likely to come a time in the not so distant future when all that I will be able to see is light from dark, with possible shadowing.

Lastnight was an insight (pun intended) to what that world will feel like.

And I don’t think it is ever a world that I will he ready for.

Although registered as severely sight impaired, which many class as ‘blind’ (even in the medical world) I can still see, all be it small amounts in little detail, this is enough, my brain and memory can fill in the rest.

How will my memory cope with filling in the rest when all I can see is light and dark?

How will I tell that my children are amiling if I can only see their shadows?

Will I ever be able to cope with the fact that my sight is ever diminishing?

Or understanding how I will fit in an ever shrinking world?

Any ideas would be grateful received.

Thank you.

Blind Fail !!

Tonight while walking home from a meeting I had one of my ‘blind fails’, this one is also a bit of a blonde moment too.

I love walking, day or evening, rain or shine. Admittedly I prefer walking in nicer weather! I am happy walking in my local area, as I know the area well and with my guide dog by my side I feel safer as a single girl walking than if I were fully alone.

I am very aware of my surroundings, both from a VI point of view and a street sense way.

So tonight while walking home I thought I was being followed. I could hear someone very close to me, when I slowed down, so did they. When I sped up, they too sped up. When I stopped completely, they too stopped completely. I crossed the road three times and so did they!

Yet every time I looked around, I couldn’t see anyone.

It was at that point that I walking into a shop, with it’s good lighting and staff members I was beginning to feel safer and relaxed, when I realised that the person following me was still with me.

How though?

And that was when I found out the truth.

I wasn’t being followed at all…. I was in fact spooking myself with my own bag!

Several weeks ago I bought a new backpack from ‘Kipling’ a beautiful pink backpack, with it’s own little monkey keychain. That I discovered tonight swings when I walk!

Despite having the bag for several weeks, tonight is the first time I have not had my bag full.

So for the first time since buying my bag, I could actually hear the cheeky little monkey hitting my bag !!

So, as the title suggests…. A blind fail !!

Or should that read …. A blonde fail ??

It’s official, I am annoying !!

Last week saw me attend my 9 monthly checkup at Moorfields eye hospital.

My condition LCA is grouped in with RP, retinitis pigmentosa, as it includes many of the se characteristics like night blindness, loss of peripheral vision. With LCA – Labers Congenital Amarosa, I also suffer with myopia (severe short-sightedness) and nystagmus (involuntary eye movement that is continual)

I am now down to finger counting in both eyes, when I used to get the top line of the eye chart stood at half the distance in my rift eye.

Given that six years ago I was between the second and third line on the eye chart (depending on the letters)

I have an incredibly strong prescription lenses, which is what gives me the sight I explained above. Without any glasses it is purely light and colour I can see without holding something above the top of my nose!

Please don’t be reading this and feel sorry for me, my sight is what it is, yes it may be worse than most, but it is much better than some.

So, up at Moorfields for my nine monthly check, I have noticed many little issues in the past few months and with the puppy being off work, I was even more aware of differences from the last time I had used my cane like this.

The long and the short of it, after four hours seeing a consultant, an eye scanning team, a retinal photographer, a registra and then my Proffessor, I have an increase in my cataracts (but not enough that they would risk laser surgery with my nystagmus) I have more noticable ‘floaters’ parts of my retina that is moving around in the eye jelly, a deteriation of my peripheral.

I can no longer do the peripheral eye test where you stick your head in a white bowl like test machine, stare at the red dot in the middle and press the button when you see a green dot.

Now they use the images they get from the scans and photo’s to tell me about my percentages. I have a difference of 21% from eighteen months ago, which sounds significant, but when I have less than 10% periferal it is even more…. I am not a mathamatitain, but even I can work out that that is a lot.

The cataracts are causing everything to feel as if it is either darker than it used to be or is unbearably bright when I have been in a darker environment.

So, the main reason I go to Moorfields is because I am part of DNA study to help with genetics for RP and LCA. So far they have found and researched 14 different genes…… And then there is me!

I told the registra that I liked to be different, he said I wasn’t different I was annoying. He actually called me annoying.

But then the Prof came in to see me, telling me of another study that I could be part of, very simple blood sample is all they need. He reminded me that my condition was definately not ticking any of the right boxes at the moment and making his and the research teams work ever harder. But that at the same time, he still found my scans and photographs magical.

So, I am offically annoying.

And that is exactly what is now written in my hospital notes too !!!

Walking in the woods

A gorgeous bright sunny bank holiday Monday is just what everyone wishes for.  Me too, but with bright sunny weather comes other issues For me.

Taking my son out to a great little play park in the Forest of Bere, this means that I can also free run my guide dog in the woodlands, she loves finding sticks and jumping in the streams and puddles.

Today as we got a lift up to the forest, it appeared that most families had had the same idea, there was nowhere to park, so a thankfully we were just getting dropped off.  But being a veteran of these woods I knew that this would be ok.

Walk just 10 minutes past the park and adventure playground and your have tranquility.

maybe the odd group of older children making a camp, oor the odd dedicated dog walker, but none of the families enjoying their picnics while the Kids play in the parks.

But although I know this area very well, but with the puppy out comes the long cane.  In an off road track this isn’t ideal, but its better than nothing.

As I said earlier, bright sunny cloudless day’s are a struggle.  For me this comes in stopping me from using my remaining sight, relying purely on light and dark and shadows and sounds.

Vicky free runs wearing a play collar, this collar has a bell on it the makes a noise every time she moves (fantastic when she disappears off into the woodland)

My son is a little chatterbox and loves to sing woodland songs, so with strategically dressed bright clothes that contrasts when he runs into the woodland too to find twigs & bugs. So I know where he is too.

But on brighter days my concentration to keep safer safe and be aware that I’m not smothering him in Cotton wool is exhausting.  Mix this with panics over shadows of the trees That are created by the sun above suddenly appearing out of no-where and its quite a tricky walk in comparison to doing it on a cloudy day.

I still enjoy it, but when we get home the dog isn’t the only one who is exhausted.

Would you be able to navigate around rough terrain if your vision was clouded so you could only see the light against dark or shadow?

I would love to experiment with a few friends, wrapping scarves around their face just to let the light in, but no view….

even if you read this, but don’t go that far, I hope this post has helped you understand seeing my way!



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