Why I’m introducing a blog post about deterioration and self-identity with an ode to autumn is beyond me, but the concept of having to adapt and welcome change is what ties the two together. Plus, autumn is one of my favourite seasons to describe as a writer, so I simply had to.

You might remember a blog post I published earlier this year where I detailed how I deal with change in my vision impairment and I guess you can count today’s post as a little companion piece.

If you’re new around here or if you simply need a little reminder because granted, it has been a little while since I sat down to pour my thoughts out on the internet; I live with a degenerative eye condition called Retinitis Pigmentosa (RP to its friends). I’ve written extensively about its affects and symptoms on here before but ultimately, its main characteristics are deterioration, a constant display of flashing lights and, more recently for me, severe spikes of pain.

There are a lot of elements I have to confront when it comes to deterioration and one I haven’t explored much on here before is its affects on self-identity, so I think it’s about time we change that.

Learning not to lose myself in said deterioration is a journey that has spanned the best part of the last decade but I wanted to share this today as I know I could have benefited from reading something like this when experiencing moments of loss. Not only to feel reassured that I’m not alone, but also to recognise that it’s okay to feel a plethora of emotions. It’s natural for those feelings to affect you in myriad ways and there’s no set right way of addressing them.

So if you have or do experience deterioration in relation to your impairment, I hope you find a helpful point or something you can identify with in this post. It looks set to be quite lengthy but it’s been a few months since we had a heart-to-heart so I think I owe myself this one.

Cue the ramble.

LEARNING NOT TO LOSE MYSELF AMONGST DETERIORATION

There are a lot of things that help me to deal with change in my vision impairment, most of which are listed in that aforementioned blog post, it’s a good day for promoting that entry, it seems. But there are some moments that swiftly erode those defences, times when the deterioration leaves a little blemish on my sense of self.

Let me explain.

My impairment has been a constant feature in my life since I was three years old. I’ve grown up learning to weave the tendrils of its existence into the fabric of my identity and grown to recognise that it’s something to be proud of.

I feel empowered by the fact that I can use my impairment for good, to help others and hopefully change perceptions. I feel empowered by the Social Model of Disability which allowed me to alter my view and realise that it’s societal barriers that disable me, not my impairment, and I’m proud of how I’ve addressed and dealt with the challenging times that have come as a result of living life as a disabled person.

But there’s one arena that still needs some work and attention, something I find myself confronting when a new, stronger bout of deterioration hits: its impact on self-identity.

I’d say that I was much more prone to losing my way in lieu of deterioration a few years ago since it was all very new and rapid. I hadn’t yet grown accustomed to the wavering trajectory of sight loss and so it was easy to be all consumed by change when it happened.

Since then, I’ve adopted coping mechanisms, I’ve let myself learn to sensitively navigate the hard times and so I’m more equipped to deal with deterioration as it happens now.

But naturally, bad days still occur, when the grief of it casts a film over the already darkening world, and the reality braids with a semblance of uncertainty when something I could once somewhat see is no longer there.

It’s in those moments that I feel myself falter.

Despite living with my impairment for the best part of my life, I feel as though I’m still learning when it comes to this whole vision impairment thing. And I guess the more time I dedicate to learning, to carrying out the impairment-related admin, to fighting with my temperamental screen-reader, to recognising deterioration, the more I feel as though I lose myself.

It’s these moments that cut through the bravado of insisting everything is fine to reveal that sometimes, just sometimes, they’re not. And that’s okay.

Whilst existing in the clutch of such rapid change, it’s easy to feel unmoored and there are times when I find it harder to be buoyed by what usually helps me to keep afloat.

It’s in those moments that I have to take a step back because when everything happens so quickly, it’s easy to feel like you’re losing control. It’s easy to feel like you’re losing grip of who you really are when the thread of what you once knew is unpicked.

I’ve learned that it’s natural to feel a little lost as this thread unravels. It’s natural to feel scared or anxious of what’s to come.

I’ve felt it all in the past decade, felt it during moments of the last year and particularly in the past month which has been one of the trickiest I’ve faced in a long time.

We all know that “everything will be okay” is my favourite flavour of optimistic reassurance and it’s what guides me through the darker days. But sometimes there can be hesitancy and a hint of unsteadiness rooted in the lull that comes before the affirmation and elation of ‘I can do this’ settles in, before the good can be seen and felt again.

It’s in that lull that I feel a tad unsure, when the grip of losing something I once had feels unsettling and a rollercoaster of emotions ensues – grief to despair, uncertainty to indifference.

So quickly have these feelings forced the dam of positivity to collapse in the past, so abrasive have they been during more tangible moments of pain and deterioration.

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I’ve always said that it’s important to embrace every feeling that comes as a result of this, recognising and addressing them will ultimately help as you try to clear the fog of their consumption.

I turn to doing the things I love in order to erase the ache of deterioration, the things that build up my identity and make me who I am. I spend time with the people I love and care about whilst also taking time to myself to address my emotions and work my way through them in the healthiest way possible.

But there are moments when they’re hard to face; when the weight of the loss squashes other things until they feel frivolous. It’s those times that taint my sense of self the most.

It can be easy to let those emotions take over and if we’re being really honest here, there have been times when I’ve felt as though I’m lending myself to my impairment when trying to face the challenges it presents.

Deterioration naturally alters the way I see the world and so the way I navigate it shifts in order to accommodate those changes. Whilst I seek empowerment in making those adaptations and realising that there are alternatives, that things are still possible, I will admit to having lost my way more than once along the path that leads to that realisation.

So how do I hold on to Elin in this great emotional debacle, do you ask?

I’d like to say that it’s easy but if you’re a long-time reader, you’ll know that I’m not one to gloss over things on here, but I’m also not going to sit here and say that it’s impossible.

For me, it’s a case of recognising that some days, some weeks, some months are harder than others but seeking solace in the fact that whilst the deterioration itself isn’t temporary, the painful, tumultuous emotions that come in lieu of it are.

Grief is a huge part of the journey for me and I guess we can all identify and understand how grieving can cloud your sense of self at times.

But it does get easier with time, and with that also comes clarity. For me, the weight of ‘what have I lost’ eventually becomes ‘what do I have’ and with that comes a fusion of reminders that I have so many reasons to be grateful for my vision impairment; there are people in my life who I wouldn’t know if I wasn’t vision impaired, experiences I wouldn’t have had and ambitions and purposes I wouldn’t hold.

At the end of the day, my impairment enriches my life much more than what it takes away from it. So when that deterioration does strike, I need to remind myself that something else will come along that will add so much more.

But I also need to remember that sometimes you just might have to take a step back before you can take another step forward.

There’s a tagline I’ve always assigned to my vision impairment journey and I think it’s apt to include it here again. My eyesight is deteriorating but my passions and determination never will.

I wrote a couple of years into this blog’s existence that you don’t need sight to have vision and that affirmation still stands. My world is getting darker, the autumn colours substituted with more flashing lights, but no such veil is cast over the things I want to achieve in my life. If something, my vision for that is clearer than ever. And that is how I hold on to Elin.

That is what really matters.

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If you’ve ever or are experiencing deterioration when it comes to your impairment, can you relate to anything I’ve mentioned in this post? Do you have any of your own tips or advice when it comes to holding on to who you are in the midst of change? I’m asking for a friend so she doesn’t feel so alone in her tumultuous ramblings. On a serious note, if you’re experiencing deterioration right now, I want you to know that whatever emotions you feel because of it are valid and if you feel a little lost, I promise you that with time, support and clarity, you will always find your way.

Everything will be okay.

Elin x