As soon as the word blind is banded about it is natural to assume total sight loss. Statistically only 4% of blind people have total sight loss.
At this stage I am in the 96%, but what can I see? Lets do this chronologically and start at the beginning.
Around the age of 13 I was diagnosed with Retinitis Pigmentosa. At this age I was still convinced a radioactive accident would leave me blessed with super powers; so being told I would go blind didn’t register.
As the years rolled on despite a large amount of hospital visits I didn’t appear to suffer many physical effects of my impending sight loss. Mentally it took its toll; I became convinced the effects of my disability would be devastating to my future.
Around the age of 16 the effects began to manifest. Night blindness was my biggest problem. As the typical british underage drinker I spent many nights in local nightclubs. A vast space of thumping bass, sheer blackness and strange halos of light. At this stage I began to receive help from a few close friends. This was mainly in terms of mobility, guiding me round the dark clubs for essential toilet trips.
I began to adapt to cope with the night blindness. I literally memorised the floor layouts of all my favourite night spots. To this day I could still draw a scale map of the floor plans. This memorising of layouts served me well over the next few years.
At the age of 18 after a few field of vision tests I was registered blind. While I knew my field of view had drastically reduced over the last few years, it had little effect on my day to day life.
I was still incredibly mobile at this point, using no aids to traverse the streets. The level of vision needed to be mobile was far lower than I had anticipated.
My vision stabilised and remained pretty constant until around the age of 22. The night blindness was now effecting my day to day life. No longer was the issue reserved to the dark clubs, it now effected dimly lit areas too.
As an example if I was walking down an indoor corridor with the lights on all would be fine, someone hits the light switch and I would be plunged into darkness. My eyes would take a few minutes to adjust and I would regain some clarity. This made the transition between bright and dull problematic. As two rooms are rarely lit equally. So upon entering a room it would take a few minutes until I could see.
My field of vision also deteriorated and began creating odd and scary visual defects. As my vision deteriorates I lose my periphery and central vision, leaving a strange mish mash for my field of vision. This results in a few scary effects. The scariest issue being objects appearing out of nowhere.
Imagine walking down a street which to you is free of all obstacles. Then BAM a lamppost appears 2 feet to your left. Looking ahead the path again appears clear, “Hello!” where the hell did they come from. This becomes scarier when it involves say a car, motorbike or cyclist. Especially when the first indication of their existence is an impact.
Reaching the age of 25 I began to introduce adaptations to my IT equipment. Windows was quickly disposed of, its horrible text rendering made reading to difficult. Enter OS X and its far superior font system. At this stage this simple change was all that was needed.
By now my lack of vision was only just becoming noticeable to my colleagues and friends. Even to date some friends don’t even know I am blind. As my vision deteriorated I began requiring more assistance with mobility.
This was more down to changes in lighting than field of view. The field of view was actually easier to deal with, memorising floor plans was still serving me well.
At the age of 27 my vision deteriorated rapidly. For the first time I would class my field of view and environmental lighting as a serious issue. The time to acclimatise to new lighting conditions had increased and the clarity simply didn’t come through.
So that brings me to where I am now.
My field of vision is now a problem, mobility has become an issue. Moving around outside unassisted is now a safety issue. Tripping over curbs, walking into posts is an all to commmon occurrence.
The night blindness is now severe. Changes in environmental lighting has a dramatic effect on what I am able to see. Walking into a dimly lit room results in a sheet of darkness with a few silhouetted features just edging through. A few minutes of adjusting simply gives me an improvement on the silhouettes not clarity. Lighting is now more important than ever.
Adaptations, at this point a few simple changes to my base OS X install does the job. I will go into detail in a future post about my particular computer setup.
I hope that covers a brief overview of my current and past state, any specific questions don’t hesitate to post a comment or email me.
7 thoughts on “What Can I See?”
Alright man, its weird reading that. Even though ive spent a good chunk of time hanging out with you i guess giving you a little helping hand here and there was something i did without really thinking about it. I knew your vision was bad but i guess i never really thought about how bad.
Thanks for this time-lapse description. It really helps me to understand how RP progresses. I have Myopic Macular Degeneration so I share some of your problems – especially night blindness. The worst is traveling through light and shadows – just entering the shade of a tree gives me this horrible few moments of blindness.
I am inspired by your ability to adapt and protect your mobility. I hope I do as well as my disease progresses.
Lighting changes do have a dramatic effect. Getting used to the lapses of vision cam be difficult. In terms of mobility I try and concentrate on a number of paces ahead so I can piece together where I need to go.
My mobility is important and I continue to push the boundaries by running.
How is your vision on objects close up? I’m short sighed; I can’t make out anything without glasses (used to be contacts) and without glasses I couldn’t walk down the street without everything being a blur of colours/shapes. I suppose I could manage though as at least I can see where the objects are to avoid them even if I have no idea what they are! I can see perfectly with glasses on so I can’t imagion what it must be like for you having to adapt to your vision changing without the ability to just get stronger lenses. Without the glasses I can still see close up (very close up like!)
I am short sighted as well so suffer from the same symptoms. However getting new glasses is very difficult, as when I have my eyes tested its in a dark room. So I cant actually see the eye chart particularly well, so its a constant guessing game.
I do have far better vision in contacts, but they pose their own problem as they increase the night blindness. So as long as its sunny they perform fantastic, dim the lights and it all goes to hell!
Im also seeing how all those nights out and times when I didnt really take into account how bad your vision was is now made clearer with the above post.
Like Neil said, Its just a thing you do for friends without realising, and at the time when you was 22~24 and we used to pop out drinking, I really didnt know how effected your vision was!
I asked you only months ago what you could now see, and you showed me the image of your eyes and the blind area’s in which you have from a text book example.
I think it’d be good to add to the blog post (While you can) with images of this! It made me realise some of the actual issues you have learnt to cope with.
This was an eye opener for me (No offence ment by that) but seriously I was blind to the conditions in which you live. I’ve never once heard you moan or state that you had issues. So definatly something I feel that you’ve delt with amazinfgly well.
I hope you find some new techniques and guides to help others in gets by in the same ways as you do mate! I know you have the mind and skills for it! 🙂
Thanks for the positive comments, I did and still do try to make the best of it. I will continue to adapt everyday and move forward.
This blog and my mission to run a 100 miles will hopefully be inspirational to people within the blind community. To show despite a disability anything is still possible