Sight loss and grief

So yes, I’m going to be talking about grief, specifically the loss I’ve felt over the years when a fraction of my eyesight fades away because I think it’s a topic that often slips under the radar. We talk about the misconceptions, we talk about the barriers, the challenges and how much of the world isn’t designed for vision impaired/disabled people, but I often feel like these leading topics of conversation camouflage others that deserve some recognition too. 

Grief has played a big part in fabricating some resentment I’ve felt towards my vision impairment over the years, so I thought it was about time that I give the feeling a platform because, despite the pain it causes, I do believe that it deserves some of the lime light. 

So here goes…

SIGHT LOSS AND GRIEF

Grief is so unique and personal, often going unseen, but it’s felt by us all in one way or another, sometimes dormant and sometimes roaring into existence, puncturing our days with tears or unwanted thoughts. I’ve been grieving for an aspect of my life for years now and today I want to speak my truth. 

Whenever I have to admit that I can’t see something, a flutter of grief rises in the back of my mind. It’s something incommunicable that I rarely express out of fear of burdening others or adding to their own plate of worries. I think we’ve established that I’m a bottler on here before; I do well in pouring my thoughts into carefully crafted blog posts but when it comes to speaking those thoughts out loud? Well, that’s a different story. 

I’ve always been lucky in the sense that I have the incredible support of my family and friends to bolster my confidence and to reassure me with their comforting words at any given moment, (their unwavering support is still a huge source of comfort for me and I’m endlessly grateful for that). But I did feel so alone in my sight loss journey when I was growing up, especially when I became routinely aware that my eyesight was frittering away. 

There were times when I didn’t understand my inability to accept this loss I was experiencing and I feared what would come next. Not knowing how much eyesight I stood to lose terrified me. 

The fate of my eyesight was unclear (no pun intended) and my reactions to each moment of uncertainty differed. 

There was anxiety, heartbreak, sadness and fear because I didn’t know what was to come. 

Now, although I’m much more aware of what consequences sight loss carries for me, the deterioration often elicits  a similar reaction. 

There are so many days I think positively about my vision impairment and I’ve always tried to weave this … way of thinking into my daily routine. But there’s no denying that there are tougher days or weeks and moments where I believe that ‘no one can grasp my loss’. 

This couldn’t be further from the truth of course as there are thousands of people living with sight loss, and I’ve found so much comfort in engaging with those people. I’m sure some of them can relate to this feeling of grief I’m talking about. 

I think I started feeling a sense of grief towards the end of my time in primary school. Before then, I was partially in the assumption that everyone else was just like me and that we all saw the world through blurred and hazy lenses. Turns out, that wasn’t the case.

When I realised this, aged around 9 or 10, I think I was subconsciously angry that my eye condition was forcing me to make changes to my life whereas others around me seemed to breeze through without having to make any adaptations. 

But despite feeling this way, I was never one to talk about my grief. I’d make the occasional passing comment about how my eyesight was becoming blurrier or the oh so famous phrase in my life, ‘I can’t see it’, but that was the extent of it. There was no display of emotion to accompany the comments, it was simply my normality. 

I think a part of me was oblivious to how much affect my deteriorating eyesight was having on my life. I was so desperate to fit in and carry on with my days positively that I unconsciously brushed the feeling under the carpet, not wanting to entertain anything that would make me appear negative or unable to cope. 

But then there were times when my grief was magnified and I’d find myself in pools of tears, at the most random of times and places; at a career meeting in school, at break time after a maths lesson, mid conversation with a work colleague… The tears would keep coming and I couldn’t muster an explanation when I was asked what was wrong, mainly due to the fact that I didn’t necessarily understand myself. I knew there were some underlying catalysts to their departure, but it wasn’t until later that I realised that grief was at the core of my tears.

The tears were an external display of my grief, the thing that had been bubbling away in the back of my mind, eventually overflowing into random bursts of emotions that I couldn’t contain. And yet it was still very rare that I spoke about grief and fear in these moments. 

When I noticed a small change in how I saw the world, I normally brushed it off because I knew that this was inevitable. I knew that it was an aspect of my life that was beyond my control and I learned to accept that since I didn’t want my every step to be governed by my sight stealing disease. But when a more drastic change occurred, I was shocked out of my usual way of thinking and it felt as though I was being dragged away from everything I knew, almost being locked out of the world and the life I was building for myself. 

Part of me quietly hoped for things to stabilise following a dramatic episode of deterioration, ‘This will be the last time’ I thought,  but alas, RP had other ideas. 

This realisation was viscerally painful and there were moments in my teenage life when I felt so far removed from everything I had known before. I’d try to make light of the situation in some cases, giggling at the prospect that I’d be falling over more often or having regular meetings with a wall I didn’t see, but there were times when the realisation made a deeper cut and I found that I wanted to escape into my own little world, away from the reality of sight loss. But the more I hid away, the more pressing the outside world became. 

I found myself in a bit of a predicament; I didn’t want to be alone with my grief and my loss but I also didn’t know how to articulate my feelings to those around me. It’s something I still find tricky. 

Grief often slips seamlessly through my thoughts, it’s a feeling I’ve come to recognise and therefore I’m more confident in dealing with the loss of my eyesight now but it’s still rare that I convey how I feel. My fears and my worries often go unheard, leaving others to hazard a guess at the reason behind my rare displays of emotion. 

I realised as I grew up that more deterioration was inevitable and this was now the template in which I had to manipulate in order to build positively upon if I wanted to move on. I was forced to accept the fundamental truth that RP would continue to clip away at my eyesight and present the low pain of grief as it did so but I tried to hold on to any positives during those dark moments. 

I don’t necessarily register the deterioration when I’m enveloped in my home comforts because this is my life, it’s all I know now and I accept that. I’ve learned to adapt and alter strands of my life in order to make them accessible to me and I can proudly say that I’m comfortable and confident when making those changes. 

But I know that grief will always be a dull ache, veiled in feelings of anxiety and fear that can sometimes be difficult to shake. 

I used to position my worth on the crumbling foundations of my eye condition, believing that it defined me, who I was, and how I approached my life. I would feel helpless when it dawned on me that “I would have been able to see that a couple of years ago” (maybe not clearly but the possibility was there), the fact it no longer is can sometimes be heartbreaking. 

And that’s when I feel grief’s intense grip the most. 

I find it incredibly hard to quantify at times and the gravity of knowing that my world will continue to become blurrier and darker hits me like a ton of bricks some days. It can be difficult to process and I’m not ashamed to say that I’m continuing to grieve, and sometimes I’m scared. But I try not to live in the shadow of that fear anymore. 

I’ve accepted that sight loss is a part of who I am but, although I’ve reached this stage, I still have the right to grieve for what I’m losing. I’m learning that it’s ok to feel this way, it’s all a part of the journey. 

I know that I have a lot more grieving to do in terms of the eyesight I’m losing but when I marry that feeling with all the positive things that my vision  impairment brings to my life, it doesn’t feel as raw anymore. 

When it comes to my vision impairment, the grief I feel ebbs and flows, a lot of thoughts and worries surfaces with it but I really do think it might just be making me a stronger person in the grand scheme of things. 

I’ve recognised that travelling through the grief cycle is healthy. There is no right or wrong way to grieve, and it will take time. But you need to allow yourself to do it to move on; covering up your pain and grief will only prolong your struggle, take it from someone who knows. 

If you are going through the grief cycle, whether it be with sight loss, disability, or something else, please be patient with yourself. I’ve personally experienced many phases of grief when it comes to losing my eyesight, as we’ve established here, and if you’re experiencing something similar then please know that there are people out there who will help, listen and offer you that comforting hand  to work through your pain. Help is always out there, never forget that. 

Elin x

If you’re seeking support, here are some sight loss charities that can help: