Dear Retinitis Pigmentosa: An open letter to my vision impairment

I sometimes begrudgingly cast an eye over my blog’s archives, trying to pinpoint what posts shaped this online space into what it is today. I went as far back as January 2017 the other day and sitting there, at the beginning of the month, was an open letter I addressed to my vision impairment. I reluctantly clicked ‘read’, unsure of what words would greet me on the following page. Yes, I was right, I had every reason to cringe. Mind you, I might do exactly the same when looking back at this in 2023. 

I carried on reading, curious as to what thoughts and feelings I captured on that day three years ago. My face was a picture of an array of unamused expressions as I neared the middle and then the end of the post and, amongst the despair I felt towards the words I had written, there was room in my mind to note how much had changed since I inevitably hit publish on that post. So many details of my vision impairment have changed in the mere three years that have passed by, so I thought it was about time for an updated version. 

A photo of Elin from the side, she wears a faux leather burgundy skirt which has a zip down the middle and two pockets on either side, it's paired with a black high neck top which has gold buttons on the cuffs. Her left hand is raised to just underneath her chin and she's smiling at the cameraPIN IT

So here goes. 

AN OPEN LETTER TO MY VISION IMPAIRMENT

Dear Retinitis Pigmentosa,

Do you remember how much I used to resent you? How much I wish you didn’t exist? It’s almost been 19 years since you first caused a symptom and this year marks 10 years since living with you meant that my eyesight was branded too poor to stay in the boundaries of ‘partially sighted’. 

I no longer hate you. In fact, I accept you. But as you continue to steal more eyesight every day like a dog always wanting more food, always hungry for more, I remember the hate I used to feel for you so deeply. 

You create this emptiness, a hole that doesn’t yet have the beating heart of acceptance and, although I don’t find myself lingering in that space as often anymore, it still exists. There’s familiarity rooted in that empty space; I remember it well and recognise it as a place where my mind wanders to when you present pain or cause my world to blur and fade more than it already has. 

These past few weeks haven’t been easy; I wince as the lights indoors and out force me to squint, the pain of this sensitivity encouraging a headache and you’re the catalyst. This is the effect you’ve been having on me and it doesn’t seem like you’re ready to loosen your grip any time soon. 

19 years on and you’re still adamant of making yourself known. 

I find that difficult sometimes you know, especially when I walk into the living room, unable to see my parents sitting there anymore. That’s a bitter pill to swallow. 

I’m tired, RP, of your relentless attempts to drag me down.

For all the agro you’ve caused over the years, it sometimes surprises me that you have the audacity to constitute any more, but you do. 

And so, this is my life. This is the affect you have on it. Sometimes you make me uncomfortable here.

At 21, you’ve taken most of my eyesight away from me and you’re still greedy for more. 

A photo of Elin standing on a wooden suspension bridge, she wears a black high neck top which has gold buttons on the right shoulder and on the cuffs. It's paired with a faux leather burgundy skirt and tightsPIN IT

The deterioration you’ve caused is something I’ve always been acutely aware of and I’m becoming better at expressing that loss to those around me but I can still find it tricky to articulate your true impact sometimes. 

And that’s where a lot of my blog posts stem from; the typed words sprout up onto the page when I find it difficult to speak them. And so, I guess I have to be greatful to you for that, RP. Living with you means that I have the opportunity to share my story and help others who might have a vision impairment too so, for that, I say thank you. 

A photo of Elin standing on a bridge with trees in the background, her right hand is raised to just underneath her chin and the gold button on the cuff of the top she's wearing can be seenPIN IT

A lot has changed since I last wrote to you and I can’t deny that you’ve had an impact on some of my life choices during that time; my educational routes, my independence, how I feel about going to certain places – you’ve played a part in it all. You’ve contributed to the inevitable low-points but you’ve also shown a commitment to creating some good. 

You’ve encouraged me to find a certain kind of strength, you’ve helped me to push myself and you help me to gain opportunities that allow me to address you in a positive way. 

See, you’re not all bad. Yes, my eyes feel weathered and worn because of you but we’re alright, aren’t we? We’ve learned to co-exist. 

I can’t deny you; you deserve to be acknowledged and accepted for what and who you are because I can’t change you. And so, I try to live with you as harmoniously as I possibly can. Whilst there’s anxiety and panic when another fraction of eyesight slips through my fingers, I know that all I can do is be honest about you and your impact. That worry will only mellow when I accept you for all your foibles. 

But no matter what level of acceptance I show you, you never dull down in your existence. 

I don’t know how much eyesight you’re still planning on stealing from me and I have to admit that this is a worry that has permeated most of my teenage years and early twenties up to this point. You’re unpredictable and that scares me. 

Your symptoms have made me feel too anxious to take part in things or go to new places in the past. Staying at home has always been the ‘safe’ option and perhaps I’ve been starved of some experiences because of that. But, despite your persistence in making me feel this way, I have reached a point where I want to venture beyond the comfort and reliability of my ‘safe space’, I don’t want you to stunt my personal development and I’m stepping out of my comfort zone in a way I’ve never done before. And, you know what? I feel more confident than I ever have in doing that. Onwards and upwards, right? 

A photo of Elin standing on a suspension bridge with trees in the background. She wears a black high neck top which has gold buttons on the right shoulder and on the cuffs. It's paired with a burgundy faux leather mini skirt which has a zip in the middle and pockets either sidePIN IT

I let my mind wander sometimes, it slips into a corner that questions what would be different if you didn’t exist – funnily enough, I wrote a post about that in the same year as my initial letter to you. Where would I be now if you hadn’t been there to influence some of my choices? Would I have spread my wings? Would I be more confident?

I’ve so often branded you as a freedom-stealing fiend, always ambitious to prevent me from feeling confident on my independent travels. It wasn’t until I reached out to a sight loss counselling service (yes, that’s something I’ve done since I last wrote to you) that I was able to fully address this notion that I had about you. I was able to tackle a lot of the anxieties you caused me when travelling independently and I’ve come on leaps and bounds since then. So, I’ve learned that talking about you, my vision impairment, can really make a difference. 

I try not to admit that those questions I mentioned come to mind more than they probably should but, when you take something else away from me, I can’t help but wonder. 

Saying this, although I can be curious about how my life could be different, it doesn’t mean that I’m not happy with some of the contributions you’ve made to it. There is some good in all of this; friendships, this blog, how living with you gives me the opportunity to raise awareness, they’re all good things and so, I try not to focus too much on the things I can’t change. 

A photo of Elin from the side, her left arm is raised to just underneath her chin and she is wearing a black high neck top with gold buttons on the cuffs and a burgundy faux leather skirtPIN IT

However, I guess it’s only natural that I sometimes sit and consider your innumerable traits; You create this unique blend of unwanted feelings at times and you marinate my mind in this sour cocktail. But there is some sweetness in there too and, amongst the bitterness, I try to focus on that sweet sensation. 

We fall into this cycle quite often, don’t we, RP? Dipping in and out of love and hate. Sometimes you create so much haze which makes me think it’s impossible to move on from. But then I remember the light you can bring and then we move on again. 

Sometimes I can’t believe it’s possible – especially when you push me into the storm that sees the world go darker – but we do, we find a way. And, in that moment, I try to reimagine my  world. Living with you means that I’m not able to see it in the same way as everyone else but it’s animated in its own way to me, oozing with possibility and that might be something you can help me with. 

That’s the point when our dynamic switches; the moment I remember that you can contribute to some good. 

It’s not always a case of dissatisfaction or sadness. Sometimes acknowledging you, my constant shadow, is a sign of strength and exploring what you bring to my life might simply be possibility.

But I can’t deny that our relationship is strained and tainted, of course it is. Sometimes you break my heart when I can’t see the beauty of the world and I’m forced to accept the fundamental truth of the impact of your existence. You’re not always the friendliest of companions, are you, RP? But I can imagine that I haven’t been the best either. I’ve strained my eyes in an attempt to make the most of what I have left but when I push too hard, you’ve fought back in resentment. 

You’re there, in the back of my eyes, a part of me, and yet you’re not mine to control. I’m powerless in your decisions and how much eyesight you’re willing to grant me. 

And this impact you have can sometimes outweigh the positives you bring, the pain can encourage the departure of tears but, amongst it all, there are some rewards and they can be so much greater than the misfortunes. 

That’s why, despite how wistful you make me feel, I know that there’s always a glimmer of hope on the horizon. You might not always allow me to see it, but I know that it’s there. 

Well, a lot of this has been quite negative, hasn’t it? But, amongst it all, I have to let you know that I am so very certain of the positives you’ve allowed too. 

A photo of Elin from the side, she wears a black high neck top, a faux leather burgundy mini skirt with tights and a black handbagPIN IT

I think I’m now managing to nurture this commitment to being patient with you and to appreciate the things that you add to my life rather than what you take away from it. I’ve spent what feels like a lifetime trying to comprehend your consequences, I’ve cycled through various stages – falling off and crashing into things in the process – but I’ve realised that you hold a certain kind of significance in my life and that isn’t something to be ignored. 

As part of this significance, I’ve been able to unearth, nurture, appreciate and develop facets of myself that may not have come to light if I wasn’t living with you, and I recognise the value in that.

So, who knows what plans you have for the future, I hope they’re nothing too drastic. But, whatever they are, I think I’m ready (or as ready as I can be) to face them but, if it all gets a little too much, you can expect another letter from me very soon. Words are my weapon of choice after all.

Elin x

Comment

8 Comments

  • SJG
    January 19, 2020

    Hi Elin.
    Wow, I felt every word of that. We are together in our struggle with RP. I could feel my own tears bubbling to the surface as I read your feelings about this ever changing condition.
    Thank you for sharing your heart so personally. It was an honour to read. You are not alone.

    SJG

    • Elin
      SJG
      January 20, 2020

      Thank you so much, this honestly means the world.

  • Khushi
    January 20, 2020

    thank you so much for this post.
    I read your previous letter and it was amazing to note how far you’ve come with it.
    I know that it is very hard to imagine your feelings for me as I’ve been blind since birth. but still, I loved reading your take on RP.
    I wish you all the luck and best wishes.
    no matter what, I’ll always be sticking with you and your blog.
    keep posting and encouraging me, helping me and giving me comforting words to read.
    thank you so, so much for this post xx.

    • Elin
      Khushi
      January 21, 2020

      Thank you so much Kushi, your support always means the world xxx

  • Holly
    January 22, 2020

    Such a beautifully written and honest post. You should be extremely proud of how far you’ve come, I’m so so proud of you! xxx

    • Elin
      Holly
      January 22, 2020

      Thank you so much lovely xxx

  • James
    January 27, 2020

    Thank you for sharing your thoughts on living with RP, I to have RP and have ups and downs with my mind working over time telling me to give in and use a cane but I will not. I have just to be extra careful and I am very good at getting around and don’t often walk into things apart from wet floor signs we all hate them! And with having kids and being told they have a 50/50 chance of developing RP this worries me so much and I know I will blame myself if it happens and emotional strain it will have on me will be more than being told I am losing my sight. Please someone take all my sight and not my kids if only that was an option. Keep writing.

    All best James from Wirral

    • Elin
      James
      February 3, 2020

      Thank you for your comment James. I reacted to my cane in the exact same way as you did, I think it takes a different amount of time for people to get used to the idea of using one but as long as you’re confident and happy without one at the moment then that’s all that matters. I can’t imagine how much worry that must cause you but none of it would be your fault. Wishing you and your family well, thank you for reading.

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