IT CAN BE SCARY, AND THAT’S OK

I am no stranger to the trials and tribulations of Retinitis Pigmentosa. Living with an unpredictable deteriorating eye condition tinges my life with hints of, dare I say it? Worry and fear. Feelings that are often more prominent than I care to admit.

It’s something I’ve touched on a few times on here so I won’t dig much deeper into the specifics (she says before writing about 10 paragraphs on the topic) but I think this lesson is an important one to address.

My Mum and I have been taking short walks throughout the course of lockdown, that’s when my chronic illness grants me the luxury. The beauty of living in the countryside is that we have unlimited access to an array of yawning fields. So that’s the scene I’m setting here.

Each time, I’ve noticed how different the world looks to me now. It’s something I’ve always recognised whenever another fraction of eyesight slips away from me but acknowledging it doesn’t come easy.

 On a walk, the only thing I could see was a slither of green land, out of focus and much darker through my view than it would have been this time last year.

There were flocks of sheep framing us as we picked our way through the long grass. I could hear them, they were close, but I couldn’t see them.

Whereas I would have felt relatively confident in unclasping my hand from my mum’s elbow a couple of years ago, I’ve been much more tentative in this approach in recent months, completely disregarding it nine times out of ten.

When I wandered back into my room, it looked dark and distorted – the sun often leaves this kind of pattern in my view when I transition back indoors again – and I noted how it took longer for my cream coloured furniture to return to their normal blurry shapes.

This fearful side of living with RP is one that’s hard to articulate in a short supply of words so I might dedicate a full post to it one day. But some of these feelings correlate with details I touched on in my post, Sight Loss and Grief, earlier this year where I unearthed some rather insidious thoughts.

These feelings have been magnified in many forms when I’ve experienced deterioration in the past but as I note that the world is fading before me gradually every day, I can’t help but feel their weight more intensely. Similarly, not knowing what struggles and level of deterioration may be lurking around the corner often keeps me suspended in this state of fear.

Despite the fact that I try to brush them under the carpet with my broom of positivity, sometimes they’re feelings that can’t be ignored so here’s me acknowledging them and recognising the fact that experiencing them is ok, it’s natural and I know I’m not the only one.

I’m trying to remind myself that yes, there are negatives and tough moments to wade through but they’re not a benchmark for how things will be every day.

I think there’s strength in recognising that.

A POSITIVE TO MOST NEGATIVES

I think we need a lighter point after that last one, don’t we?

Despite it being the architect of many struggles, RP has definitely offered many positives in my life.

At the end of 2019, I made the decision to apply to become a mentor for young vision impaired people in the hope that sharing my experiences could help to guide them through whatever challenges or feelings they were decoding themselves.

Before starting my blog, I never thought I’d share my experiences with others, let alone in such a direct way as mentoring, having previously housed my thoughts in a little shell that no one could crack.

But investing my time in sharing my experiences and reflecting on how doing so can benefit others, has underlined the fact that a negative experience can be utilised in a positive way.

I’ve really tried to hone in on the fact that positives can be derived from the darkest moments and I hope that, by sharing that with others, it helps them to find the light too.

I USE IT TO HIDE MY CHRONIC ILLNESS

My last blog post was dedicated to this topic so I won’t keep rabbiting on here. But if there’s one thing that has become clear to me this year, it’s how my vision impairment often takes centre stage in disability-related conversations, camouflaging my chronic illness in the process.

Here’s a little taste of what I wrote in my full blog post on this which you can read here if you fancy.

“I had faced the repercussions of sharing aspects of my sight loss journey, some of which were exhausting to endure. In a way, knowing what results could be derived from sharing such a vulnerable aspect of life only magnified my wariness to divulge more.

It felt as though people believed that my CFS symptoms could never match the impacts sight loss was having on my life, and it meant that I grew tired of explaining.

So, I guess you could say that I started to suffer in silence since it seemed that my eye condition would always take centre stage. My chronic illness was cast aside, pushed to the shadows and it meant that I was scared to bring it back out again.

Hiding it became the less painful, and the less complicated option.”

IF I DON’T KNOW WHAT ELSE TO DO, LAUGH

Discovering my limitations when it comes to living as a disabled person has been… an interesting process. And living in a world which wasn’t designed for those of us who can’t see has been cause for many mishaps.

Meetings with pillars, walls, chairs, tables, open dishwasher doors, not to forget the oh so fun art of tripping and slipping up – and down – steps (you name it, it’s all happened), have left me black and blue and I can’t deny the times when a whisper of embarrassment has mingled with the pain.

All of these minor incidents have fed in to the way I view my life as a disabled person over the years and not knowing how to react to some of the situations I find myself in has left me in two minds in the past.

Part of me quietly expects my days to come complete with these little misfortunes amongst the bigger challenges that come in lieu of society not being up to scratch in terms of accessibility, equality and inclusion. Like I said before, there are moments of frustration and hints of sadness and grief when my family’s previously slightly blurry profiles are replaced by a more intense veil of darkness and brighter flourishes of flashing lights. But there are also situations with more of a light-hearted air like I mentioned above.