My journey

I was 8 years old. I remember I’d trip over things in the dark, as I couldn’t see very well. No one would believe me.

“Oh, she’s just a kid, its normal”, they’d say. 

Night blindness isn’t normal, it’s quite rare actually!

Soon after, I went to the optician’s, and they noticed something wasn’t quite right.

After my appointment I was referred over to Moorfields Eye hospital in Old street, London.

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There, I was diagnosed with a rare eye condition called ‘ROD CONE DYSTROPHY’.

This condition affects my peripheral vision, central vision, night vision and colour vision. My eyes are also very sensitive to light. I also have very poor depth perception, so when I’m walking down stairs sometimes it looks like a slope to me!

I got registered as severely sight impaired in September 2015, and since December 2015, my vision has been gradually getting worse. Especially in the centre of my vision as there is a dark patch where I can’t see. Take the second image as an example, and imagine dark corners, a grainy filter and flashing lights.cropped-mona_lisa_with_amd1.jpg I had to go to the hospital every 6 months for check ups. Metal clips would be attached around my eye socket with wires connected to a machine. Bright lights would be close to my eyes, and my pupils had to be dilated so the doctors and professors could see the back of my eyes better. I remember having a field test to test my peripheral vision.

Here is an example of what the pictures would look like:

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I honestly hated going to hospital, I didn’t know what was going on. I was so scared of eye drops, bright lights, scans and people or objects being so close to my eyes. I also can’t make eye contact with people as I find my eyes find it hard to focus, and are distracted easily. Me and my dad would use the underground to get to the hospitol, and when you go into Old Street, there’s a green line on the pavement which leads to the hospital. When i saw this green line, I’d freak out every time, I’d shake and i wouldn’t want to go. I referred the green line as ‘The green line to my hell’ in my song Old street, because the hospital terrified me that much.

green line

Funny how this green line now seems like the line to heaven for me, because I’m so grateful for the doctors and professors who have looked after me during this process! I’ve been to the hospital countless times, but when I went here about a month ago, I was so excited! It was the first time in my life where I wasn’t dreading it! My eyesight had gotten worse again, but I wont let it bring me down anymore, because I’m grateful for what I have left, and I’m grateful that I have found ways to let my condition inspire me.

When I was around 11 years old, I got told:

“You will go blind at 25-30 years old”

A professor working at the hospital said this. I received a letter 4 months later apologising for the false statement. I don’t remember my reaction to this statement, and I don’t think I quite understood how powerful it was until now.

I felt very isolated at school, college, and my first year of degree, because every one would go out having fun, and I wasn’t physically able to unless someone I really trusted was with me, as I couldn’t see in the dark.  I couldn’t accept I had a rare condition that was unheard of by so many people. I couldn’t accept that my vision was gradually getting worse. I couldn’t accept that there was never going to be treatment for my condition.

I felt angry with myself, and hated the person I was because of my permanent condition. No one understood me fully even if they tried, and I don’t blame them because no one is going to understand something like that, unless they go through it. All I wanted was someone who had the same condition as me to speak to me, but there wasn’t anyone.

When it gets dark all I can see is shadows, flashing lights and outlines. I can’t see in detail in dim lighting or recognise faces, and all I see is silhouettes. What do you see?

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Being away from home for my first year of degree made me realise how important family support was. It hit me hard during the long winter. Nights in.. missing nights out, because of my night blindness. A very empty and lost winter is how I can describe it. Far away from my high expectations of how I pictured my first year of my degree.

I wouldn’t want help, because I was too stubborn, and I couldn’t accept my condition. I didn’t feel that any one was 110% willing to help me, and even if they said they were, then I wouldn’t believe them. Spending a lot of time feeling isolated in my room most nights, I had time to process what the professor had said to me years ago.

Sometimes I also feel very claustrophobic. Here is a little poem that i found in my diary to make the feeling of claustrophobia more easy to understand.

‘Face your fears they say…

But every time I’m in the dark, there’s no power, there’s no gain.

My fears wont fade away.

Being trapped in darkness is my pain’

Every time I’d try to go to a pub or a gig, I’d panick, as I was scared that I’d loose who ever was looking after me. I’d loose appetite and sleep over the thought of going out at night for days.

At a gig, I could hear a lot more than I could see. People’s voices eating at my ears, mixed with my thoughts and fears, mixed with me… so weak.

I had to tell some one how I was feeling, it was really overwhelming for me, so I wrote it down on paper from poems to great songs. My condition inspired me to develop as a singer/ songwriter and my first song that I was really proud of was a very personal song called I don’t want to go blind. When I got through the BIMM auditions I was so shocked, I couldn’t believe it. This is by far my favourite song that I’ve written, I hate this song, but I love this song.

CLICK HERE to see my performance.

But then came the thoughts of ‘How am I meant to walk to the venue by myself in the dark? How am I going to weave my way through the audience? When will my family come to look after me and get me through backstage?

My depression and anxiety started around this time. Anxiety was something I hadn’t been through before, and I really didn’t know how to deal with it. At this point I noticed that I needed help so I started doing meditation, having counselling, and talking to my student support officer about my problems. What I’ve learnt from these experiences is that bottling up our problems is never okay. It’s always okay to talk to some one who would support you and listen, as this is the first step to healing yourself. The support I got from people when I finally opened up was amazing. Time can really change things. 6 months ago I wouldn’t tell any one about my problems, but now I’m posting it online!

My student support officer told me:

“You may not be able to change your condition physically, but you can work your feelings around it mentally.”

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The more I tried and tried to get better , the more I failed… BUT no giving up! It made me strong and determined to get better and now I’m able to think in a healthier way.

My lovely counsellor suggested that I should write a letter to the professor who told me the false statement. This really helped, even if I couldn’t send it to him. 

Dear professor

That made me anxious, I don’t even know your name. How can I forget your name after you caused me so much pain?

Drilled into my head those words I can’t forget.

Drilled into my head those words I WONT forget.

‘You will lose your vision at 25’

he said

‘You will lose your vision at 25’

HE SAID.

I need you to know the pain you caused, because what you caused has no gain.

I don’t need you to know the pain you caused, because guess what?

You caused me to gain.

It took years to process and it will     take years to fade.

And I still question myself every day, “Will I go blind, will I be okay?”

I want to travel, I want to change, I want to be of use to others that need it because I can. I want to be successful with my hopes and dreams.

By 25 I will achieve

I wont be hopeless, I will believe,

Thank you for the inspiration, for my motivation to dream

By 25 I will achieve’

 writing

Over time, I thought to myself:

Hang on a sec, why am I being sad over something I can’t change? I have a rare condition, and no one can see cool things exactly how I do? (Well I mean sober)…

I also realised that my condition has inspired me to write songs, its made me strong and different, and there’s nothing wrong about being different at all, because who cares what any one else thinks?b urself

I’m very determined to raise awareness for invisible illness’s like mine. I want people with an invisible illness to speak out and share their journey’s with everyone. I want people to help these people through their journeys and be as supporting as they can. Having a disability is having an ability to do some thing a little more. I do this through song writing, and music. I want to help people get better, because I know how it feels and I know how to help.

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3 days ago I took part in a research program called the 100,000 genomics project.

The project will sequence 100,000 genomes from around 70,000 people. Participants are NHS patients with a rare disease, plus their families, and patients with cancer.

The aim is to create a new genomic medicine service for the NHS – transforming the way people are cared for. Patients may be offered a diagnosis where there wasn’t one before. In time, there is the potential of new and more effective treatments. 

 

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3 days ago I also took another step forward, and agreed that I needed to use a white symbol cane from now on. Symbol canes are used to highlight a visual and/or hearing impairment, and aren’t intended to be used as a support aid or to detect obstacles. There are 3 types of canes which vary in sizes and i currently have the smallest one. Here is another scan of the back of my eyes, which was taken in 2015.

OCT right 01-09-2015

Despite not being able to see in the dark, I have achieved so much with my music this year, and I wont let my poor vision get in the way. Yes, I am prone to getting more illness’, because of my illness, BUT this fact won’t stop me from achieving my dreams. I also recently got tested for dyslexia, and will be going for my assessment soon. This doesn’t bother me either, because having a disability is having an ability to do something a little more. Having a disability is seeing the world in a completely different way to people who don’t. Having a disability is about learning and accepting that you are stronger than anyone else, because you have the ability to perceive things in an extraordinary way. 

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Here is a link of a video on YouTube of a man called Miles Hilton. He’s a blind man who has achieved big dreams! When I watched this video it brought a tear to my eye, and it really inspired me.  CLICK HERE.

Any questions about my condition or my project, please don’t hesitate to contact me, or leave a comment down below. I’m only just starting out with this project so I’m open to any advice or ideas.

My next steps, as a musician is to write songs about social topics as well as personal topics and social dysfunctions, because I want to carry on raising awareness.

I hope I will inspire people who have suffered from an invisible illness. Send me your journeys or comment in the comment section down below if you are ready for that, as i would like to share your journeys in my blog posts. I would love to help and give advice. In my next blog I was planning to talk about how I will use my music to tie in with this project, but after this blog post, people have been more interested in me talking about the daily struggles of my disability and mental health, so i will be talking about these things!

And remember… 

“Start with your dreams, not your circumstances”- Miles Hilton

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6 thoughts on “My journey

Add yours

  1. Absolutely beautiful post. What a harrowing journey you have been on through your life thus far. I found this piece to be very hooking, it kept me engaged and I could feel for you emotionally having been told that devastating news, even though it wasn’t true, it really shaped your life and what you did moving forward. I’m so glad you’re able to look through the positives from this journey of your life. Also that you made such a beautiful performance out of it too, and that music/art has been your saving grace through your own journey. (Art has been one for me, too)

    I also really liked the repetition you did with the “3 days ago” bit. I did a similar repetition in a post myself a week or so ago. It’s quite nice. =]

    (You’re also very beautiful by the way!)
    This post did make me think a bit about scoliosis as an invisible illness–in some respects. Technically it can have physical disfigurement as part of its symptoms and progression but I think it could fit under your theme. If you decide it could, I have personal experience with that and could write you my journey with it that you could put onto your blog? Let me know what you think girlie! =]

    ❤ I'm looking forward to your next posts!

    Liked by 1 person

    1. Hello! Thank you for this comment! I’m glad it’s made you think and I’m glad you enjoyed reading it!! Yes music and art has helped me through my journey and I recommend it to the creative people out there! I’m really glad to that I can now look at the positives, I hope I can encourage other people to do the same! Thanks for your live by comments , I would love to hear your story of course! If my post has inspired you, please write your journey down and post it then send it to me! I will mention it in my upcoming blogs for sure! good luck with the writing, it may be a bit hard a first but I highly encourage people to share their stories, share to aware 🙂 invisible illness plays a big part in this world, I hope people like us can inspire people with our disabilities :)- having a disability is having an ability to do something a little more!- let’s get everyone thinking like this :)!

      Liked by 1 person

      1. No problem!! 😀

        Art can be so healing, it’s quite fun to be a creative person too! ^^
        I honestly don’t doubt that you’ll be able to have that type of impact on others. When a person can keep to the positive side, even though we all have our struggling moments, it really does encourage and inspire those around us. Just remember that it’s okay and natural to not be okay, too. ❤

        Awesome, June is actually scoliosis awareness month, so it'll work out wonderfully. I'll take a week or two to get my brains sorted out and writing about it, but I'll add it to my list for sure and contact you once it's up! =] I can actually include pictures of what my spine looked like both pre-op and then post-op way back when! 😀

        That's also a wonderful way to look at it! Brava! ❤ ❤ ❤

        Liked by 1 person

      2. Art can be very healing yes! It is okay not to be okay and I hope after people read my blog they will feel less ‘alien’ ! Because I’m sure I have felt like that at many points in my life!

        Liked by 1 person

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