After filming with guide dogs about my eye condition project in 2021; which sadly didn’t go anywhere as such.
I was invited to help them further with this and become a cartoon.
The above video is the final edit and published on Guide Dogs Uk.
And here is the accessible audio described version for my readers who are visually impaired.
This 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???
On 20th March 2017 I found myself sat in the audiologists office having my hearing aids fitted; which I wrote about in What does sound sound like?.
I had previously been told I would only need a hearing aid for my right ear, yet when I arrived at my appointment I was actually fitted with a hearing aid for both my left and right ear; a pleasant suprise, yet a very welcome on. Because in giving me hearing aids for both ears the audiologist was able to programme the strength in each side differently so that I heard the same.
I wont’t lie, I hated wearing them.
It took me a long time to get used to ‘hearing’things again. The little things, like the kitchen clock; the dogs gnawing on their bones; the sound of my feet on the pavement. But (following the audiologists advice) I soon learnt to ‘not hear’ or rather ‘tune out’ these sounds; sounds that my brain had learnt to ignore (just as it does for most people who can hear perfectly well)
I also quickly learnt how little and inconspicuous my hearing aids were. With very few people realising that I actually wore them.
When they were originally fitted, I had them set by the audiologist to automatically adjust with no input from me. However this was not while I got used to them.
In July ((1 beep, 2 beep, 3 beep, 4) I had my hearing aids adjusted and since then I have gone from strength to strength in using them and wearing them each and every day, just as I would with my glasses (even though I now get so little from wearing them-wearing them is a daily habit)
I have also added to my ‘tech’ to go with my hearing aids, with my amplicomms personal t-loop system I am able to listen friends in busier environments, have calls streamed directly into my ears with the microphone around my neck; I am also able to listen to audible and music too.
My CPiC and I are working on using it as an aid to my climbing….. But that is a whole other blog post!!
So, what have I gained in the last year?
I have learnt that just like glasses for me, hearing aids to not ‘fix’ my hearing; however they do enable me to hear more and clearer than if I don’t wear them.
I have been able to feel safer out and about, especially with hearing traffic and its direction. So much so, that in recent months I have gone back to enjoying walking into town (about 2.5 miles) with Fizz guiding me.
I have also learnt that I can ‘shut out’ noise if I want to sit quietly with a cuppa or a cold pint, then I can turn my hearing aids down, put them into the induction loop setting and I can sit peacefully. So I can have ‘selective’ hearing too!!
Its been an interesting year of wearing hearing aids, I would be lying if I said I am getting used to them….. But I am finding the postitives with them, both with my own hearing and with the connections I have made with other people who have hearing and sight issues.
I am still wanting to work on fundraising for my own pair or ReSound Hearing Aids, which are so much more ‘tech’ friendly with my iPhone and Apple Watch, but that is a work in progress.
A friend asked me yesterday what I saw when I looked at her face in person not by looking at a photo.
We were sat only a coffee table width away from each other, so not far from each other.
As someone who has always had poor sight (although not as bad as it is now) I have no ‘normal’ memories of sight to refer to.
I usually explain it as. I can see the shadow of your eye, but not the colour or even the white in them. I can see the darker colour of your mouth, but no detail or if you have food in your teeth.
But this doesn’t really help.
So, a quick look for an app at that App store and this is what I came up with.
Can you see me?
Watching the Para-athletics, makes me wonder:
Would I be a Climber if I could see?
It’s a simple question; but honestly not one I can answer.
Simply put, it doesn’t matter about ‘can I?’ ‘Would I?’ or even ‘Should I?’ Because I can’t see and I can climb.
My sight & hearing loss has made me who is here today, it’s not about what I can’t do.
it should ALWAYS about what I CAN DO.
Yes I like most have wishes and hopes of things I want to do; but as yet haven’t. I am also human and long for the day that I can see and I can watch my children playing on the other side of the park. But, I am a realist and know that there are some hopes and dreams I will never have come true.
But life is for living, something that I can’t do if I sit too long and dwell.
As a parent myself, I thought hard about the names I gave my children, their father had his opinions. We went through baby books, baby names and even google to help us choose.
My parents, named me Theresa-Claire, as the second born I was afforded a middle name where my sister Samantha wasn’t. I was also afforded the same initials as my father; Trevor Clive. Was it hoped that I would be TC Jr?
I am not in a position to ask these questions. I am however able to tell you how, for as long as I can remember I was called many alternatives to my actual name.
These included ‘Top Cat’ – ‘TC’ – ‘Tessa’ – ‘Tuppence’ and for the majority of my adult life ‘Tee’
When I married I took my husbands surname, when we separated and then divorced to revert to my maiden name would have cost me the fee of a deed poll. So, with my new partner I chose to double barrel his surname on the end of mine.
Becoming Osborne-Bell.
I had never liked my married name, I never made any secret of this. Despite my daughter having my ex-husbands name, I couldn’t and didn’t want to keep it and as we were married when she was born, Osborne never formed part of her name as it has my sons.
Families have their differences, arguments and even irreversible consequences. But I am not prepared to denounce any of my ‘chosen’ name.
But I have found a new ‘nickname’ off the back of it.
Dropping Osborne-Bell to O-Bell. And altering Tee to Tink. And now I am my very own magical, mythical pixie Tink-O-Bell.
Known often just as Tink !
In this past year I have been improving myself, admittedly half-heartedly with the support of my coach and cousin Charlie. I have been working on creating the best version of me. Loosing weight, improving my nutrition and sports performance through the use of Herbalife Shakes, supplements and products.
And this is where my name is key; for my favourite example of Tinkerbell isn’t in PeterPan, it is in Moulin Rouge (played by the singer Kylie) where she is the little green absinthe fairy. Full of fun.
I am now looking to take my involvement with Herbalife further, I am now looking to use my own product result and increased energy with Herbalife to the next step.
….. That’s a whole other chapter that is only just beginning !!
But either way, it is with this involvement of the colour green that I am going to truly become my own version of Tink-O-Bell !!
Yesterday a chance meeting with someone suddenly enabled me to put together the mess of a jigsaw I have been living for many months.
A polite, kind and welcoming woman who was absolutley besotted by Fizz, asked me a question I have never been asked before, there was no malice in her words or ulterior motive for asking what she did, in the way she did; she asked me one very simple question.
How do you feel about having a disability?
I can imagine as I type these words that several of you will be taking an inhale of breathe through your gritted teeth!! Maybe even muttering “you can’t ask that!”
Honestly though ….. YOU CAN.
Why can’t you?
I grew up with the saying “there is no such thing as a silly question.” A phrase that I stand by even now as a parent, a friend and most of all as ME.
The answer to this question was out of my mouth and I could hear my own words as if I were listening to someone else say them.
My answer was simple;
I feel guilty.
I feel as a parent I am holding my children back,
I feel like I am a burden to my friends.
Rationally I know the answer to my own guilt is me, I have just never put it into words. And WOW didn’t those words hit me like a 500 tonne truck!
Not because my own words shocked me, not because they upset me, not I was cross with myself for saying it; rather because hearing the words made me realise my irrational and unfounded fears and how they held me hostage in my own thoughts.
I have no need to feel guilt; I did not cause my eye condition and hearing loss. My disability isn’t the result of anyone’s actions. It just is.
So, if I know rationally I have no need to feel guilt, doesn’t just stop me feeling it. Nor does it stop me thinking these thoughts. It just gives me the realisation that to move forward I need to understand it. Work through it, and most of all admit it.
After all, isn’t there a plagiarised quote on Facebook, Pinterest and Intagram that says:
LIFE IS 10% OF WHAT HAPPENS TO YOU AND 90% OF HOW YOU REACT TO IT
Depression is a ‘hidden’ disability. And yes it is a disability, anyone who has ever suffered with it, medicated or not will explain how on a ‘low’ day, even getting up to go to the loo is unbearable. Therefore, disabling….
So, if depression is a hidden disability; what does it look like?
it looks like this ……
Yup, it looks like me!
I don’t often put up the bits about me, but my depression is part of my sight loss, it is part of me and it isn’t something that can be fixed quickly with medication and ‘telling someone how you feel’.
As a trainee counsellor I more than most understand where my depression stems from and it isn’t just one thing, it is a lot of little things, some from my past, many of my present and also fears of my future.
Just because I know the WHY, doesn’t me I can fix it. Depression is partly an imbalance of chemicals and to support me I take medication, but this isn’t the cure.
Just like knowing how your car works; it doesn’t mean you would know how to fix it if it broke….. I am not finished with my training yet, a good counsellor NEVER is.
We don’t always know what is going on on the inside, a reminder to be kind and understanding. What may seem protective, controlling or even shying away may have a hidden meaning.
I wanted to share this, I do all I can to smile and ‘put a brave face on it’ but it doesn’t always work, also I have a really annoying best friend who knows me TOOOOOOOO well and he won’t always let me hide away.
