Hello there, my name is James and I’m a 32 year old sufferer of the hereditary and degenerative eye condition known as Retinitis Pigmentosa (RP). As is common with RP the main symptoms I experience are tunnel vision (although I’d describe it more as a collection of interconnecting blurs that block and distort light shades and colours, blending them confusingly together, rather than as a simple long dark tunnel) and night blindness. I’ve also started to lose my central vision (I think the consultant at the hospital described it as “macular degeneration”) and develop cataracts. Oh and I’m also short sighted, but that seems to be the least of my problems now.
For many years my condition appeared to linger at a certain stage until around 2008 when there was a noticeable step in the deterioration and I found myself struggling with such things as reading normal print and recognising faces. At that time in my life I’d just ended my career as an administrative civil servant due to depression and erroneously assumed that this sudden increase in loss of sight might somehow be related, but after a quick trip to the hospital it was confirmed that my RP was just entering another stage in its evolution. Since then I’ve had to adapt to another set of visual impairment problems which, up until then, had mainly included night blindness and what can now retrospectively be described as only the beginnings of tunnel vision.
I’ve started wearing my spectacles less and less as they no longer help with reading or seeing fine details (the small amount of focus they give me is almost negligible) and I have to use strong magnifiers to read even large print. I’m finally able to start investing in better technology including magnification software for my laptop and a Kindle so hopefully I’m on the positive road to managing my life and eye condition better.
Since I’m quite introverted and self conscious I often find that the process of adapting to sight loss can lead me to draw attention to myself which I’m personally not too keen on, therefore I’m constantly trying to find a balance between doing what I need to do to get by in a visual world and not finding myself distracted or disorientated by my own social phobias and hang-ups. As well as RP I’ve suffered long-term with depression (although in contrast I’m quite a positive person so I think the depression is triggered by external forces and controllers rather than my own internal outlook) so finding a path through life that complements both health disorders is an experience that can either be described as uniquely challenging or nightmarishly Kafkaesque.
These experiences I hope to chronicle here in a positive and constructive manner.