GUEST POST by Elin
I’ve always had an honest approach when it comes to writing about sight loss. If you scour through my blog’s archives, you’ll find posts on anxiety, loneliness, bullying and the misconceptions, just to name a few. I think that the fact I’ve offered a window view into these strands of my life is testament to that honesty. The window is very much open.
I often have unfollowed threads of thoughts floating around in my mind and so today I want to weave some of those together in order to muster a post about some of the things that haven’t made it into the spotlight on here, yet.
So it’s happening: I’m plucking up the courage to talk you through some of those thoughts, my untold truths, because not only will it help me to get them out of my system to some extent, I hope it means that I’m able to capture some of the unspoken realities of life with sight loss.
But of course, this is only a reflection of my own experiences and not a representation of everyone living with sight loss so please do bear that in mind. However, if you can relate, don’t hesitate to reach out, maybe we can be each others’ virtual shoulder.
Now, after a slightly longer introduction than I anticipated, let’s get into the nitty gritty of today’s topic, shall we?
Oh and apologies in advance if this doesn’t follow any particular structure, it’s very much a ‘think about it, write it’ kind of post so please bear with me.
THE UNTOLD TRUTHS
As the freshness of autumn lingers in the air, I’m sure we’re all looking back on summer with a longing feeling for all those times spent with family and friends, the memories we’ve captured and stored away in a happiness filled arena in the corner of our minds.
I’ve had some amazing moments this summer but some of which have been shadowed by my disability, inviting a variety of previously unexplored feelings whilst also igniting emotions and anxieties that I know all too well.
Let me talk you through a scenario; it’s 3am and I find myself drifting in and out of sleep, once I start sinking into an unconscious, peaceful landscape, a sudden thought catapults me into an awoken state again and I’m met with many unanswered questions to ‘entertain’ my brain during this twilight hour.
The cogs are well and truly turning and I have to admit defeat to the thoughts that rally around.
I had been somewhere the night before, setting out with a hopeful mindset for a good time. And I think everyone did, have a good time that is, but as I stood there, being met with a blurred and increasingly dark canvas, I couldn’t help but let sight loss dictate how I felt that evening.
Unsure of who was around me and who we were talking to, I let my mind stray into a pit of urgent questions, the conceptual ‘Why me?’, ‘Why does this have to be my reality?’ – questions that inevitably lead to unspoken answers that I might never hear.
I realise that whenever I’m in this kind of situation, all my anxieties are alerted, the red light switches to green and all the cars come rushing past with urgency, a rush I try to ignore but it keeps on coming and I’m left feeling like an outsider, I’ve let my vision impairment lead me to my own secluded bubble and all I want is for it to pop so I can feel included like everyone else.
This anxiety often steers me into a ‘should I or shouldn’t I’ debate when asked to go to a big gathering, a pub or a party because I know I won’t enjoy the experience as much as I’d like to.
Not being able to see those around me or recognise the voices of those I’m talking to when everywhere is strewn with people, it’s a situation I find to be incredibly difficult and so the thought is a trigger to so many others that remind me, I can’t see.
A wave of anxiety often rushes over me and when it crashes, I let it scupper the enjoyment.
And that means I’m often there, statue like, feeling slightly cast aside with my own realm of thoughts, an outsider, looking in on everyone else. Only the lens I’m peering through is knackered and its focus won’t get any better after a click of the on/off button.
Now its something past 3am and the rallying of thoughts continues. The next day, I play tribute to a quiet mouse, unable to voice the difficulty of the night before.
Dramatic? Maybe, but a reality I live each time I’m in a big crowd of people. I wanted to manifest those feelings on here because I think it’s important that people know.
Saying no to going places as a result of this is something that encourages a whole other pond of thoughts and wonderings. It can spiral into the fear of missing out along with the urge to hunt down Harry Potter, maybe he can cast a spell that can make this go away.
If you’re not a regular reader then you should know that I’m not usually this negative but I think it’s important to introduce this side of the story, you can’t get a full understanding of the book if you don’t read every chapter after all.
Although I’ve accepted most aspects of my vision impairment, I’ve come to know this feeling of neglect and sadness, it’s not a constant feeling, an occasional visitor rather. Usually something dormant but when it creeps forward, it propels me into a space inhabited with anxieties, the thought of being different and a few other emotions I don’t usually entertain.
I imagine that I’m not the only one that slips into this scenario. I’m sure we’re all met with unwanted spirals of thoughts sometimes, things that explode into a flurry of light and colours, encouraging another to set off.
This is what has been happening to me lately and it’s proven to be quite the conundrum.
In the last few years sight loss, in every facet of its being, has proven to be a long journey laden with feelings of grief, upset and frustration. I talk about the latter quite often, the frustration of missing out on the visual aspects of life to the bitterness of the fact that independence doesn’t always come easily.
But grief – grief – has been a big part of my journey that I haven’t addressed much before. I think it deserves a lot more attention now because it’s the root of so many other feelings that can sometimes drag me down.
I’ve found myself saying ‘I can’t see that’ and ‘I can’t see you’ a lot more than I used to, it’s more than certain a daily occurrence and it can be a difficult reality to comprehend. Those words are reminders of how much has changed. Symbols of, well sight loss, and how much of my eyesight has faded.
The grief of that fade has been a struggle in itself. It has always been there and I’ve learned to exist with it but sometimes it becomes more prominent, creating knots that I’m not quite sure how to untangle.
That’s why I’m writing this. Sometimes all those frantic feelings need to be addressed and the only way I know how to, in the best way, is by writing. What I find to be the most cathartic of things, something that helps me to express each thought and to decompress them until the knots aren’t so tight.
The things I’m mentioning are symptomatic of a little more deterioration in my eyesight so despite the struggles I’m expressing here now, I know I’ll be able to pull through. These kind of feelings can filter down to us without invitation and when they’re too headstrong to be pushed aside, it’s important to acknowledge them. Without talking or writing about them, the quiet, insidious thoughts can swell in size, pushing us closer to the edge of defeat so if you’re struggling with anything right now, no matter how big or small it is, please reach out.
As my vision deteriorates, I sense another layer of my world unfolding and it’s hard to know how to react to it at times. As yet another small percentage of eyesight slips through my fingers and its impacts sets in, I’m left feeling scared, powerless in what’s happening.
And this guides us nicely into the fact that sometimes, there’s apprehension tangled with the sparse knowledge of what’s to come. It takes a lot of strength to overcome that. Sometimes that strength falters a little and it’s left weakly clinging on, like autumn leaves trying to hold on to those last few moments on the branch.
But that’s it, nothing is ever going to be plain sailing. Despite having a positive view of my disability (most of the time, it hasn’t shined through today but it’s still there, lingering somewhere). I’m still adjusting, still accepting and adapting aspects of my life to make them accessible to me.
Whilst I’m committed to a positive outlook, I want to show that there are still negative moments, difficult times, tricky situations and things that I want to go in the opposite direction of and avoid completely.
Anxiety, upset and uncertainty still exists and you know what? That’s ok. It doesn’t matter if we grow and develop from them, it just matters that we allow ourselves to feel these things and that we’re able to be honest about how they affect us. Then we can start focusing on what the next step forward will be.
There is a sea of people adapting to life with sight loss, adjusting to the harsh realities of being blind or vision impaired. Some of us might be able to swim better than others but there are still times when we’re all frantically treading the water underneath, trying to fight against the current.
That’s only natural, for anyone.
I guess what I’m trying to convey today is that life with sight loss can feel restricting sometimes.
There are times when I’ve felt my teenage and early adult years have suffered for this restrictive feeling. Living with sight loss means that I can’t always offer a ‘yes’ when my friends ask me to go out with them because of the anxiety I feel when in busy places, it means that I can’t be spontaneously independent and go somewhere without planning ahead and it means that sometimes, just sometimes, I’m overwhelmed by what impacts it has on my life.
However, and this is a big however, what it does mean is that I have a different view on life and I try to use that to my advantage. Despite the negativity, I try to adopt a positive mindset and that’s something I’m managing to achieve, or so people tell me. I realise that there is a glimpse of something good or positive in most situations and I try my best to hold on to that as best as I can.
Sure, sight loss has meant that my life has unfurled in some cases and there will always be certain aspects of my disability that I’ll continuously try to adapt to but having cracked some of the code, there are some things that make more sense. They’re the glimmers of light that sparkle and from those, we can grow and adapt to different possibilities.
There are different lessons to learn during the negative moments and through them, despite their difficulty, we can witness and adopt a whole new perspective. Equipping us with something so powerful that we realise we simply weren’t aware of before.
We’re sometimes thrown off track in life, unwanted feelings are invited into our minds and it can be difficult to know how to push them out again. But in time, we begin to understand the core of each thought and from that we can find the best way of acknowledging it and moving forward, learning how to navigate back on to the path.
We’re all entitled to dedicate some time to becoming accustomed with whatever challenge we face and to understand the foibles that come alongside them. Difficult moments are inevitable but when we address them in a way that best suits us, we can cycle on through and grow along the way.
And breathe…
This, despite it being thousands of words long, by no means covers each thought but I have talked through quite a few. Maybe others will sprout up on to the page one day but for now, this is enough.
Although I haven’t been the most forthcoming when it comes to sharing about sight loss over the last month or so, writing about these things today almost feels like a confrontation to the things that have built up over the last few weeks.
I’ve somehow felt confined to the narrow parameters of my disability and what consequences that has for me but now – now – I think I’m finally slowly graduating back into the mindset that everything will be ok.
Because ultimately, it will be, even if that knowledge isn’t always clear.
If you’re still here, reading this, then I raise a glass to you. Thank you for reading through my flurry of thoughts.
Are there any elements of what I mentioned today that you struggle with too? I think it’s important to open the conversation about some of the quieter subjects relating to sight loss or disability in general so if you have something you’d like to share, please do get in touch. I for one feel reassured when I hear that I’m not alone in what I feel and I’m sure others can share my relief in that too. Let’s break some of the silence surrounding the topics that deserve to be heard.
Elin x
You can find Elin’s blog, My Blurred World here.