Tag Archive for SSI

Remembering the day everything changed; yet stayed the same

Thirteen years is a long time:  It’s also an incredible measure.  

On this day 13 years ago I left my Consultants office feeling that my life was over; all because in that 45 minute appointment where I entered expecting to discuss a double cataract operation to DRAMATICALLY IMPROVE my sight I actually found myself leaving with my CVI (Certificate of Visual Impairment) and being told that my sight was already bad enough for me to be registered Severely Sight Impaired. (previously classed as BLIND)

And in the grand scheme of things, the risks of cataract surgery because of my eye movement (Nystagmus) would not offer me any significant benefit.

This day 13 years ago, nothing significantly or physically had changed with my sight.  The deterioration had been there all of my life, but it had been so gradual and undetectable by my optician that even though Doctors predicted that I would go blind as a child; because this hadn’t come to fruition at the age of 10/11 I had been discharged from the hospital.

And only after a chance conversation with my optician about how long it took my eyes to adjust from outside to inside has found me back seeing the consultant at the local eye hospital for the first time since I was about 12!

This day 13 years ago was actually the beginning of so many good things.  

However that wasn’t before I went through some incredibly dark times (mentally) and still do to this day.

I am so very grateful to those who have walked beside me in the last 13 years.  

As well as those who have walked away.  

Because for someone who now no longer makes out even that GIANT single letter on the eye chart or anything that is not within the 3% of my remaining central vision; the way my life has changed in those 13 years has enabled me to see many situation incredibly clearly. (Pun intended)

So with a smile, a positive outlook and an AMAZING group of cheerleaders behind me.  I am the girl I am today because of the pain I faced ON THIS DAY 13 years ago.

My sight has deteriorated dramatically from that appointment 13 years ago, but my character, my inner strength and my stubbornness have got me this far. And I have no doubt they will get me through the next 13+ years.

Myth Bust: Blind Girls (and guys) Can Wear Contact Lenses

Just as someone who is severely sight impaired (blind) can and does often wear glasses; they are also able to (sometimes) wear contact lenses.

And why ?

For the same reason anyone else would wear contact lenses…. And for me, wearing contact lenses enables me to wear non-prescription sunglasses; among other reasons. (Vanity induced)

Until I wrote this post, it is part of me that very few know about.

Having had hard contact lenses when my sight was much more complicated as a teenager I did not get on with them.

Yet now with my simpler prescription I have been introduced to the world of soft monthly disposable lenses and for the past month or so I have been trialling them and find them so comfortable and easy to use and wear.

I thought I would write this post because earlier this week I was asked to ‘prove’ that I wore them. (By someone of authority-not just a random stranger)

This found me standing in the middle of a very busy London area, cleaning my hands, then moving and removing one of my lenses.

Which was followed by apologies and a long conversation about assumptions !! (And me getting a little bit told off for being ‘sarcastic’ )

My visual field is now at less than 3% and even with the best lenses I still can’t make out the top line of the eye chart, yet I still wish to make the most of my remaining vision and as I have found the days getting brighter (another part of my sight issue) I find contact lenses with wrap around (non-prescription) sunglasses help me with this.

I guess the point I am trying to make here is that it is the assumptions of others and people’s need for ‘proof’ of disability that needs to change; which is only going to happen by people asking questions (something most adults aren’t good at) and by people having conversations.

Those who know me, know I will happily have these conversations over and over again…. But I am just one person.

Reflections

Photograph of Tee, Weston a grey t-shirt saying “climb on” stood in front of a black and white canvas of a misty hence in Greenwich Park

Photograph of Tee, Weston a grey t-shirt saying “climb on” stood in front of a black and white canvas of a misty hence in Greenwich ParkThis November it will be 10 years since I was registered SSI (Severly Sight aimpaired aka BLIND) it was the appointment with my consultant that EVERY seemed to change, yet at the very same time NOTHING changed.

What I mean by that is that my eye sight didn’t actually change at THAT appointment.  I  simply became aware of just how bad it was.

Having had my Nystagmus (involuntary eye movements) and having worn pretty strong glasses for as long as I can remember my sight had never been great.  But in terms of the distance I could see (I have always been short sighted) had changed very little.

Rightly or wrongly so; when I was in my early teens I had been discharged from the consultant at the hospital, where I was given into the care of my opticians.  With the strength of my prescription And it was through this team that in July 2008 they used their new camera equipment to try getting a photo of my retina.

My optician wasn’t happy with what she saw, but she couldn’t explain it to me as she explained it could simply be that with my eye movement the photograph wasn’t actually true.  So she referred me to the hospital for a thorough check up.

Having been rushed in as an emergency after the hospital were concerned I had detached my retina (a common issue that if caught early enough can be reversed) I discovered that this was not the case, the registrar discovered I had cataract in both eyes, I will always remember what she said;

With laser treatment we can remove them and that would actually improve your vision.

But as she was simply confirming I hadn’t detracted my retina, she didn’t actually comment on the fact that my retina wasn’t ‘complete’.

So, you can probably understand my total shock when I returned a few weeks later to see the consultant to be given the news of just how bad my sight was.

I did have cataracts (my left eye had been diagnosed when I was 12) But the laser surgery suggested wouldn’t be easy and would have very little affect at this time.  And actually with my retina dying away my sight would actually only get worse.

Many people ask me

How did you not realise you were going blind?

Its simple, the changes in my peripheral were suggested to be something that had been happening steadily for many many years, and as I only likely lost a small amount at a time I didn’t actually realise.

I did notice ‘little’ things after my daughter was born in 2006, like how I was bumping into things, like low level tables or benches.  But I put this down to ‘baby brain’

I had also noticed that it was taking me longer for my eyes to adjust to light changes; like walking indoors after being out in the bright sunshine, but because I had reaction lenses this went in-noticed as an actual change in my sight (as I assumed it was just the glasses)

So…… Reflections.

I have decided I want to celebrate this anniversary.  I want to acknowledge that as me I have changed from the person I was before.  It hasn’t always been happiness and celebrations, but I have tried to embrace my blindness (and now deafness)

It may sound like a cliche

But in these last ten years I have had so many amazing opportunities, so many doors open to me.  I want to move forward with me and celebrating the good seems the best way to do this.  I am human, I can’t be postmitive ALL THE TIME.  But in this instance I want to look for the good, rather than dwell on the bad.

But the question is (and this I hand over to you my readers) ….

How should I celebrate???

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