Part two in a series of blog post written by Lynne Morris…
I could have had one last blast in the car and driven home from my nan’s where I’d left it parked. However, after a very long and serious discussion with my parents, it was decided it wasn’t worth the risk. What if I had an accident or killed someone, a child even. Now I knew I had a problem. I knew in my heart, I’d never forgive myself if that had happened.
As soon as I could, I turned to old faithful – that is Google – if anyone or anything was going to explain this nightmare to me, Google would.
Ha ha, how wrong was I? There really wasn’t much to be found at all. I felt complete panic and utter confusion as the answers I had been looking for weren’t there, in black and white. All I found was a fighting blindness forum based in America. I’ll never forget how disappointed I was to find nothing at that time in the UK. All I wanted was someone with experience of what I was going through, how it felt, to tell me, all would be fine, not the end of the world, like I felt it was.
It was to remain a mystery apart from all the medical jargon which had flown straight over my head. All I knew, I was going to be blind one day. To me blindness was no light, shapes, colours. It was simply nothing just black.
Deep down, I knew it was true, what the consultant had said, I didn’t really need confirmation from Google. Funny how life throws things at you and it makes you run around like a headless chicken. Even though I didn’t have clarity of what was going to happen, I knew the end result.
Your brain has upped and grabbed its underskirts, leaving a huge exit hole in the back of your head in its haste, but life takes over. Of course, this doesn’t mean you don’t have to get up for work to earn a living, feed your dog or even pay the bills. Life goes on regardless. You don’t really have a choice. Suck it up and get on with it or just end it there.
I’m pretty certain all this must sound incredibly dramatic, considering I hadn’t been told I was dying. However, to me it felt that way, that day I was robbed of my freedom and independence. In my mind, I was damaged goods. Who the hell was going to want me? How could anyone love someone like that? I felt so useless, pathetic and unworthy. I even told my boyfriend, when I got home, what the future held for me and that I didn’t blame him in the least, if he wanted to end it there and then. I truly believed he would go and find someone else. I just wanted to curl up in a ball and die.
I had better tell you all what Usher Syndrome is before I get too carried away.
When I first heard the words. It made my head spin with daft thoughts. Is it something from listening to too much of that singer Usher, or have you been standing around too long ushering people you’ve developed a syndrome? I’m sure, I even started thinking about crusha milkshakes! Totally random.
Huh! If only it were that simple, basically my hearing will remain as crap as it ever was and all I can explain with the eyes is that it starts with night vision, you cannot see jack at night. It’s super hard work in low lighting and then gradually it causes tunnel vision. In other words ,my eyes are knackered and there’s currently no cure.
Even though I knew, I was extremely short sighted and considered myself blind as a bat at night. I honestly, never expected to be told it would get worse. I just thought I was clumsy and jumpy. Even when I ended up face first, sprawled across a van bonnet one night in front of my mates, I didn’t question why I hadn’t seen it. I just got up giggled and walked away but my god it hurt! That was me, I was the accident prone clown.
I was eventually called to attend an appointment at a hospital in Liverpool. I felt incredibly nervous and sick to my stomach, I really didn’t want to go through more tests to be told the same news. I also had a tiny glimmer of hope that it was all wrong, niggling away in the back of my mind, I fought that feeling back, how stupid could I be.
When we arrived and walked into the reception it struck me as very modern, spacious, shiny and it didn’t feel like we had walked into a hospital at all.
They wanted to take blood first, I hate blood tests. We were taken to a nurse in a cubicle, the clinical smells of hospital all around and I couldn’t get rid of the feeling of nausea and fear. The nurse prepared my arm and I averted my gaze as she took blood. I felt the whole thing because she wasn’t very gentle.
They then put more of the murderous drops in my eyes and performed an electromagnetic type test. I can’t remember exactly what it was called.
It wasn’t very pleasant as it involved having something like gold leaf or copper leaf electrodes inserted into the lower eyelids, it was horrible having a foreign object inserted into my eyes. It wasn’t natural, it didn’t belong there. You automatically fight and want the irritating object out of your eyes. These were connected to wires, my head sitting and resting in a washing machine door sized hole.
It was very dark, they had turned off the main lights in the room and lots of lights started to flash like lightning. All I could hear was the steady hum and whirring of the machine. I still felt very frightened and nervous, I couldn’t seem to focus on all that was said to me about the different things they wanted. Once, the test was completed, I wasn’t able to move as my eyes hadn’t adjusted, I could not see a thing it was like a million camera flashes had gone off, I was told to remain in the chair until I had recovered.
We (the three of us again) went in to get the results from the consultant. After he had completed his own thorough examination with a light, he confirmed it was Usher Syndrome, most likely type 2, but we’d be required to go for genetic testing for that to be confirmed. More flippin’ tests! The glimmer of hope I had fought died completely.
In between the hospital appointments, I had to return to reality, which was going to work to keep my job and getting on with life.
Yet to do this I now had to travel by bus. This was a journey I could complete in forty minutes in the car. It would now take me an hour to an hour and half to get to work.
However, it wasn’t that straightforward. I had bought my house in a rural area never dreaming I would need a bus route one day! There were only 2 buses a day!
I had to take time off work in order to organise and explore options. I had thoughts of panic running through my head, especially that I would lose my job, which would result in losing the house. It was all I could visualise the snowballing effect. I couldn’t think straight at all. I just felt like I was slowly getting buried in a hole I couldn’t dig my way out of.
I was lucky my mum still had her head on her shoulders and not lost it like I had. She had been on the phone to the RNIB and they had suggested a scheme run by the DWP called Access to Work. It was designed to assist keeping people with disabilities in employment.
Yipee! All my problems had been solved! I just needed to phone them and my life could resume to partial normality. I picked up the phone dialled the number and a lady answered. I explained I needed access to work to help get to work and why.
She responded in a bitchy scathing voice, “We are not here to provide ‘you’ with transport to work we aren’t a taxi service.”
I promptly burst into tears, I couldn’t utter another word and I hung up on her. My life had been thrown into limbo once again.
I couldn’t face another phone call to explain my situation. My mum came to my rescue, she stepped in and made the calls for me because I was far too emotional to deal with them. After the way that woman had spoken to me, when I had felt optimistic for the first time since diagnosis, I was completely crushed. I couldn’t ‘see’ a single thing worth carrying on for. I really wanted to give up there and then. There simply was no point to all this hard work and the grief, if there was no help or support to be had. The only option that was available was to move back home with my parents. That really wasn’t what I wanted to do. Nobody wants to go backwards, once they’ve found freedom.
I finally got sorted and started my awkward tiring journeys to and from work on the bus. These journeys became quite eventful and frightening at times, as I had to deal with weird men making me feel uncomfortable and behaving strangely. I’ll never forget one of the regulars on the bus, always got on after me and he would try and sit as near to me as possible. He used to spend his journey staring at my legs. Oh, how I missed the security and freedom of my car. I really felt scared and stressed a lot of the time.
My colleagues were very supportive and understanding up to a point. However, they couldn’t understand why I was so down about it. Nothing had changed really. I still had my job, my house and my vision hadn’t changed from before all the tests so what was the problem? All I had was a label. I couldn’t explain it to them. I just felt like a kicked puppy crossed with a ticking time bomb. I felt so lost and useless. Not having that personal independence any more, had changed me a lot more than I had even realised at that time. I was slowly losing my identity. Also, every time I bumped into someone or an object it was a constant reminder of the burden I felt. It beat me down, incident by incident, day by day.
Read part three of ‘Changes’ here… https://www.cureusher.org/changes-part-three/
We would welcome, and love, any new blog posts on any topic if it’s Usher related in some way! Send us one today to firstname.lastname@example.org with ‘Blog’ in the subject line.