Part three in a series of blog post written by Lynne Morris…
I couldn’t really talk to my brother who was diagnosed alongside me. We both reacted differently. We were both at different stages in our lives. He was still living at home, therefore, didn’t have the same responsibilities that I had to take care of and he never took his driving test, therefore, didn’t understand the loss I felt.
I talked to my parents, however, they were dealing with their own issues from the diagnosis. They felt guilty, that they were to blame because our sensory loss was genetic. It was not recorded anywhere in our family tree history. It was not their fault at all. I didn’t blame them in any way but because there was a one in ten thousand chance of two people with the same defective gene getting together. With a one in four chance per child. With my brother and I being twins, the jackpot was hit twice! Their feelings of guilt were double.
I did eventually find a friend on the American forum. He helped me so much in those early days, telling me his story as he was about five years ahead of me in diagnosis and he was from the UK. He had suffered similarly to myself with having to give up driving etc. We are still in contact today. He cracks me up when I have a bad day.
A year passed by and I did my best to get through each day, to everyone on the outside I was coping, I was happy, and I had accepted my future, I was getting on with life. Inside, I was struggling and slowly my inner self was dying.
I decided to change jobs and get one closer to home. The bus journey was really grating on me. I found alternative employment at a small company and looked forward to a new change and challenge.
Eh oh (buzzer sound) It would appear for the next few months, I was to join my colleagues on the company’s rollercoaster and live in fear of losing my job as the company was in difficulty. I was made redundant eleven months into the job and once again had to face the uncertainty of whether I’d lose the house.
I applied for endless jobs, attended countless interviews explaining my dual sensory loss condition. Each time I did this I always sounded confident and unaffected. It wouldn’t affect my work, but I would require additional support further down the line. I even faced discrimination at one interview. It was awful even though they had said to me they weren’t discriminating, hmph if they weren’t, why did I leave in tears.
All of this was taking its toll. I completed everything on auto pilot. It took me eight months to get a job and even then it was one I never dreamt I’d do. But beggars can’t be choosers. I also had to reapply for the dreaded Access to Work scheme. I really did not want to pick up the phone to that awful office. However, I had to face my demons and did it. I managed to get support via a taxi door to door during the winter months, due to the night blindness, I was deemed unsafe to travel alone.
I travelled with the same fabulous taxi company for the next nine years. They made me feel safe and knew my limitations. They’re fantastic friends too.
On difficult days, I used and continue to use music to help motivate me. It does help me feel stronger almost invincible. Especially, when the right song hits you so hard, to the depths of your soul. You feel like you’re standing on a mountain summit, looking out as far as you can see, your arms outstretched and you want to scream your power or grief at the world.
It’s similar to when you’re driving and a song comes on, you crank up the volume and you escape in your own little world. No one can hear you singing at the top of your lungs, out of tune. So, you give it all you’ve got. How I miss that.
I’m now classed as ‘legally blind’, severely sight impaired, and yes I can still see!
It is something that has struck me time and time again over the years. The misconception that you have to be totally blind to be blind. It simply is not the case at all. I use a long cane with red tape bands which tells you I have a hearing impairment. It also has a very noisy ball on the end to help me get around.
You would be surprised at how many people don’t know what a long cane is. I’ve been asked if I was picking litter! I loathe it and cringe every time I pick it up but can’t live without it, especially if I want to save what little pride I might have and not end up face down, arse up. Believe it or not, I’ve ended up rugby tackling a bin to the ground outside a supermarket. Oh my days!
It’s a love hate relationship, while I’m waiting to be matched with a guide dog. That is another misconception you can have a guide dog and still see!
I simply cannot wait until I am matched. I have been on the waiting list twelve months now. To me, it would mean me and my buddy would be able to go out and about alone!
I really don’t like going out alone with the cane, in fact if I can avoid it I will. It is such a cold unfeeling thing. It doesn’t offer you any comfort, when you’re absolutely scared stiff and quaking in your boots. When you are trying to make your way around just like anyone else and everyone around you is going about their day as normal. Yet, I’d like to be invisible so that no one notices me. When they cut across in front of you, and you jump out of your skin, it is a little difficult to say the least. I’ve had many a collision with pushchairs, trolleys and even a wheelchair once! I cannot manage without the cane at all but it makes me feel very vulnerable and almost like a target. I just want to be a person not a disability. It makes me feel like a problem a hindrance. I much prefer the comfort of the rock I hide under.
People have even fallen over my cane and given me the death glare, yes I’ve seen you. It makes me want to run and hide or either that scream and shout like a two year old who isn’t getting their way. It is incredibly frustrating.
To me, a dog, is your best friend, you can hug a dog if you’re feeling frightened. The dog can make you laugh and cry on free run days, when they come back covered in mud or foul smelling fox poo. You can talk to the dog, I imagine it’s slightly more acceptable than you talking to a stick! Though I do know other cane users who have named their canes. Wonders never cease!
It was a very hard decision to accept I needed help and go for the long cane training. To go from being the clumsy, shrieking person who jumps out of their skin 24/7, to blind overnight, to all those around me. Hang on, what’s that stick? Why have you got that? The all-time favourite… You don’t look blind. It really is a huge step to take. It’s like going in the doors of stars in their eyes (am I showing my age?) who are you going to be? Well from this day forward, I am going to be blind me!
However, it was knocking over someone else’s child in a supermarket, who had been innocently standing by her mum. (Oh ground open up and swallow me).
“Oh my gosh, I’m so sorry, are you alright?” I said to the little girl who was screaming at the top of her lungs. I was too scared to try and help her up again.
In my head, I was shouting, ‘fuck, fuck, fuck, you stupid cow!’
I dreaded making eye contact with mum. I was desperate to run away and hide, I turned to mum and apologised profusely for knocking her child over.
I cringed and expected a torrent of abuse. I was lucky, the mum was fine and said, “Don’t worry, it’s ok.”
I apologised again, turned around, cursed and berated myself in my head. I fought back tears as I walked away. I felt completely and utterly ashamed, embarrassed. I went to the nearest checkout still fighting tears, bought a Kinder egg, and went back through my personal hell to find the little girl again. I gave it to her with her mum’s permission.
It was that incident, that feeling of mortification and guilt, something I never wanted to feel again, it took my last shred of dignity that I had and made me take the bull by the horns and make a change. Imagine if I’d still been driving!
Read the final part of ‘Changes’ here… https://www.cureusher.org/changes-part-4/
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