“How much can you see?”
“What can you see?”
“Can you see me?”
I could go on and on when it comes to the different ways in which people have asked me how much I can see, Who knew there could be so many variations of one question?
This week marks 10 years since I was a 12-year-old girl sitting in an ophthalmologist’s office, hearing him utter the word “blind”, a word that recirculated in my mind as my Mum guided me back through the hospital corridors, my eyes still stinging and feeling ridiculously sensitive as a result of the drops that had dilated them a couple of hours before.
I knew that this day was inevitable, having experienced steady deterioration for a while but this new label still came as quite a shock and it’s safe to say that I found it tricky to comprehend the reality that I was now living.
If you’re a regular reader, you’ll most likely be acquainted with the details of my sight loss story, but if you’re new to My Blurred World, I’ll quickly run through them for reference.
My first symptoms were noted when I was three-years-old; my parents realised that I couldn’t see in the dark and I was constantly referencing the fact that I couldn’t see certain things in daylight too. This, of course, sparked concern and, after three years of being tested and prodded, I was diagnosed with Retinitis Pigmentosa (RP) when I was six.
RP is a degenerative condition so whilst I was registered as partially sighted to begin with, deterioration was inevitable and I grew to understand that my level of eyesight would waver as time went by.
RP delivered on its prognosis and the disease clipped away at my eyesight ever so slowly, stealing little glimpses of the world as I grew up.
It was when I reached the ripe old age of twelve that the doctors decided to change my registration from partially sighted to blind/severely sight impaired which, as I touched on before, knocked me for six at the time.
Since then, my eyesight has deteriorated more rapidly, ushering me even closer to ‘blind’ as my world is blanketed further by blur and darkness.
Whenever I disclose my vision impairment to people, I’m often met with an endless list of questions, but the one that always comes out on top is ‘How much can you see?’
I mentioned in my last post that vision impairment isn’t black and white, it’s not a case of being partially sighted or completely blind. It’s a vast spectrum that’s rich with different perspectives. ‘Blind’ or ‘Severely sight impaired’ can be umbrella terms for a wealth of different experiences and views of the world so it’s most definitely not a one-size-fits-all scenario.
Whenever I’m asked how much I can see, I’ll typically deliver my answer by saying that I can see lights, colours and shapes but details are limited for me. However, if I were to give more of a nuanced take, this is how I’d describe my eyesight in a way that does it the most justice:
My eyesight is like an old camera which is constantly out of focus. That focus deteriorates day-by-day and the shutters are slowly closing in, casting black shadows around the edges of the photo that’s fighting to be taken.
I also have an ongoing personal firework display in my view; little flecks of light collect in the bottom corners of both eyes, dancing away. Sometimes those lights decide to sprout upwards before raining down in hues of yellows, blues and pinks.
A few people have suggested in the past that I should try my hand at doing a video or a collection of photos that capture how I see the world, so I thought I’d give the latter a go today and try to depict my view in a few shots in an attempt to portray the world, Elin style.
Despite the utter brilliance of cameras and editing apps that we are treated to these days, no amount of editing could possibly capture the true essence of what I see. But the photos you’ll see in this post will hopefully convey the closest representation that can be mustered through technology.
This will in no way be of any professional level but I thought it might be interesting to give this a go and hopefully bring you a perspective that I haven’t shown on my blog before, and what better time to do so than in honour of this 10 year checkpoint?
I should also give a little disclaimer before we get into it; This is purely my own perspective which will in no way represent everyone living with RP. Like I said, sight loss is such a vast spectrum so no one’s experience will be identical so please do bare that in mind.
And one more thing; Lighting conditions, tiredness and distance can all contribute to fluctuations in my eyesight and what level I’m granted at one given time so this is just a general take on what I see. You won’t see the flashing lights in my view in the upcoming photos for example since they’re something that can’t be replicated through an app.
Anyway, I’ve wittered on for long enough now so let’s see how this turns out, shall we?
HOW I SEE THE WORLD; 10 YEARS AFTER BEING REGISTERED BLIND
OUT AND ABOUT
AT NIGHT
ON MY PHONE
IN CONCERT
THE MAKEUP STATION
So there we have it, a little glimpse into My Blurred World.
I can’t hide the fact that, for me, living with sight loss creates this precise blend of angst and fear which is constituted by the darkness that is slowly closing in,
I’ve been pulled in all different directions by my vision impairment over the years; I’ve felt fraught and frazzled; I’ve experienced sadness and grief; I’ve been very confused at times; but I’ve learned that this is all normal.
I’ve realised that it’s healthy to acknowledge these feelings.
Over the years I’ve tried to draw power from being honest with myself and this honesty about the more daunting feelings has, in time, aided recognition of the positive ones too.
I grew to realise that, despite the complete and utter fear I felt when I was registered blind/severely sight impaired, it wasn’t the end. It was simply the beginning of finding a different kind of strength.
It wasn’t going to dilute my goals and ambitions in life and my drive and determination wasn’t going to deteriorate alongside it.
It just meant that, as time went on, I’d be learning different things and discovering new ways of appreciating the world around me.
This became an important realisation for me because, despite knowing that a life with a deteriorating eye condition wasn’t going to be without its challenges, I knew that I could retain value and purpose through knowing that I didn’t need to see the world in order to have vision for what i wanted to achieve in it.
So, to anyone who might be in a similar situation and might be able to relate to any of the thoughts and feelings I’ve touched on today, I hope you know that you’re not alone.
Whilst knowing that might not constitute much comfort, I know that it’s something my 12-year-old self could have done with hearing, along with the fact that happiness and positivity is on the cards.
My world will most likely look completely different this time next year to what you’ve seen in these photos and honestly, that’s a scary concept but, over the past decade, I’ve learned not to pre-empt reactions and thoughts I might have further down the line and, instead, try to appreciate the here and now.
I wasn’t planning for this to be such a lengthy post, I’ve clearly let my thoughts run away with me as always, but I’ll leave you by saying this; You are stronger than you know.
If you fancy sharing a description of what you can see, please feel free. I personally find it fascinating to learn about the spectrum of sight loss and how everyone perceives the world in a different way so let’s chat all things vision impairment.
Elin x
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The Comments
Katherine Cornell
This is such a brilliant piece! Thank you for writing this Elin. As a parent of two children both with Stargardts disease aged 12 and 10 now I often wonder what it is they see. Some days I dont notice that anything is wrong and it’s so easy to forget what is going on. Other days it is very obvious.
Elin
Katherine CornellThank you so much, Katherine! I completely understand where you’re coming from, my family have said the same in the past and you’re right that it’s easy to forget sometimes so you’re definitely not alone there. Thank you for reading!
Lynne Nicholson
I lost most of my sight four years ago. My left eye is a “black hole” with a very thin frame of light and colour towards the bottom but no real useful sight. My right eye is so short sighted that I see clearest four inches from my nose, however the text on my screen is “smudged”. If I hold my phone at “normal” reading distance my screen looks blank where there is text and is a block of colour (not necessarily seeing more than one colour as the dominant coloured blur tends to overwrite the rest unless there’s strong contrast) where there is a photo, on the larger screen of my iPad the text is grey blurry stripes and the photos are an abstract with several colours though again if one colour is dominant (either because of having a large overall area, or having a stronger intensity) it can mask other colours. When out walking people are invisible six to eight feet away unless they contrast strongly from the background. The light has to be like Goldilocks porridge, just right. If it’s too bright or too dark I see way less (so walking in the woods in summer when the thick leaf canopy blocks more light I see less than on a winter’s day when the canopy allows more light through though the light may not be quite as bright).
Today my six year old grandson found it hard to understand why I needed to make the words so big so I could read them on my iPad screen because he could read them when they are tiny.
Elin
Lynne NicholsonThank you so much for giving such a vivid description of your eyesight, Lynne. I think it’s so interesting to learn about the different ways in which people see, it just goes to show how varied sight loss can be, so fascinating!
Khushi
Another lovely post as always!
I loved the ALT text of these photos.. the way you tried to describe these photos for VI people.. I got an idea of your vision..
Molly Burke also has RP and in her book, I read the fireworks thing.. with the kind of vision I have, I can’t imagine how it might feel like.
I’m blind since birth due to ROP. I have light perception. I can see light and dark, I can see reflections.. when light is reflecting on a reflective surface like glass.. when a white thing is kept I can see the light reflecting on it.. if someone is standing in front of me.. or there is a wall, I know that there is something, but don’t know what it is. I don’t know how to describe it.. in short I get to know when something is blocking the path of light and all this I can see from my left eye as my right eye has a detached retina.
Sorry for such a long comment.. 🙂
Elin
KhushiThank you so much as always, Khushi. I’m glad you found the alt text helpful since they were a little tricky to word! It’s so interesting to hear about what you can see too. Please never apologise for commenting, they always bring a smile to my face! Hope you’re doing okay 🙂 x
Khushi
Elin🙂
yes 🙂 I hope you’re doing okay to 🙂 xxx
Natoya
Wow Elin, I can’t imagine going through this. My heart is with you, I can only imagine as your trying to adjust to this as your eyesight it self is adjusting day by day. You are so right in saying live in the here and now. Preempting reactions is a disease in itself. Stay strong and happy, I hope you enjoy the rest of your week and thank you for your lovely comment on my post : ) xo
http://www.juanitalikes.com
Elin
NatoyaThank you so much Natoya, this is so lovely of you! Hope you have a lovely weekend 🙂 xx
Holly
Such a brilliant and insightful post lovely, I’m sure it will give people a better understanding of the spectrum of vision impairment which is so important. Thank you for sharing your own personal experiences, loved this post as always! xxx
Elin
HollyThank you for reading as always lovely xxx
Emma Purcell
Hi Elin, Great post and a great insight into your blurred world. I also published a blog post about my sight loss journey as part of my 15th anniversary of becoming registered blind; which you can read here – https://rockfordisability.com/2020/10/16/living-with-acute-retinal-necrosis/
Elin
Emma PurcellThank you, Emma! That sounds like a really interesting post, I’ll definitely have a read 🙂
SJG
Hi Elin.
Great post. As a fellow RP girl I completely get this. I struggle with the constant adjustment that comes with a degenerative condition.
I love this quote –
‘Don’t spend a lot of time imagining the worst-case scenario. It rarely goes down as you imagine it will, and if by some fluke it does, you will have lived it twice’ – Michael J Fox
It’s harder in practice but I do try to remember the principle.
I too get the firework display pretty much all day. It can be very distracting and sometimes an unwelcome hello from my illness to remind me, it’s still there.
Sending you love
SJG xx
Elin
SJGThat’s such a brilliant quote and something I think a lot of us need to remember more often. It’s always good to hear from others who have RP too, it’s a reminder that we’re not alone in what we’re experiencing x
Kari
Hi Elin,
I live in that blurred world with you! I was diagnosed with RP at the age of nine and have lived with it for the past 44 years. You are so right that everyone’s situation is different. But I can relate to your situation. Thank you for writing openly about your abilities, even when others may call it our disability.
Kari
Elin
KariThank you for reading, Kari! It’s always nice to hear from others who can relate in some way 🙂
Megan
Thank you for this explanation. My husband is 3 years past the ‘being registered blind’ stage of RP and in supporting him there are things I just don’t ask. So it’s very helpful. He too has spoken of the ‘fireworks’ and for many years had lousy night vision – a bit of a family joke as I see exceptionally well in the dark. It’s difficult to tell just how much he cannot see, he’s fiercely independent and hates asking for help so anticipation is vital, telling him what I’m doing, what I’ve cleared away or moved. So is scrabbling to provide audio commentary for the far too many TV shows that do not have it.
Eion MacDonald
Thank you for this. I struggled as a child to understand my Grandfather’s partial blindness (one eye blind from a kick, other with impaired vision, but shapes and close things see-able at close range if good contrast) and with partial deafness. I learned to speak on my hands by letter alphabet but never learned to read hand signs. Your page and blog has given me some 70 years later an idea of what he had for vision sense. Now with deafness myself and declining eyesight.However still OK with walking and close vision. I thank you for your kindness in writing this for others.