Me, Myself and Eyes.

My Disability is not yours.

Do not tell me how it should make me feel,

Do not make me your puppet and put words in my mouth because it’s easier that way,

Easier not to hear that-

Yes, I do struggle,

Yes, I do look for my phone for 15 minutes only to find it had been in front of me the whole time,

I do spill things and knock things over and believe me, no-one is more angry about that than me.

 

Every object a potential weapon against me,

Every glass door,

Every metal pole,

Every road I cross alone brings panic bubbling to my chest.

 

No, I did not see you there,

No, it’s not something that can be fixed with surgery,

No, I do not “look disabled.”

 

What should I look like to you?

What would make it easier for you to understand?

A cane? A guide dog? A tattoo across my forehead?

What?

Do you doubt me because I do not fit your box?

Do I not act as a disabled person should act?

Do you confuse my confidence for coping?

 

I envy you.

How things come so easily to you.

Not to have to plan a day based on when the light will fade…

To walk into a new place without worrying about the obstacles around you…

To drive anywhere that you want at any time you please…

Free.

 

What do you fear?

I’m scared to confess the things that frighten me in case you laugh at me,

I fear the things that you take for granted.

I fear going to supermarkets because every aisle looks the same and every person looks like you,

I fear letting go of your hand in a club in case I cannot find you again,

I fear the day I have a child, I will not be able to see its face looking back at me…

I fear that if I do lose my vision, I’ll forget what those I love look like,

I fear the sand timer above my head, I feel the sand trickle through my fingers, too fine to grasp.

I fear so much that I have no choice but to turn that fear into another kind of energy so the fear does not consume me.

I will not lie down whilst my disability tries to strip away the colour,

I will paint my own picture and it will be brighter than it ever was before,

If I cannot climb the mountain, I will forge my own path around it,

I will embrace the fear and dive head first into everything life has to offer.

So, bring it on.

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“What’s love got to do with it?”

Shwmae folks! 
I apologise for the gap between my first and second blog post. It’s been a busy few weeks of volunteering, interviews, , friend and family catch ups, counselling, job applications and not a whole lot of writing. But that’s life- it gets in the way! 

I can hear you rolling your eyes and saying, “yeah yeah Anya…but what’s with the Tina Turner title?!” Well, apart from being an iconic song by an amazingly talented lady. Love has a hell of a lot to do with everything. 

Now, I’ve told people very close to me, since finding out about my eye condition, the one fear that stays with me constantly is ending up blind and alone. It’s very difficult not to feel like a burden to people, having  to ask someone to “take you to the toilet” because you can’t see will never stop embarrassing me. It makes me feel like a toddler, tugging at her mum’s leg…

Now, this next sentence will sound like a cheesy song title but it’s true nonetheless. Love has saved me more than once. At the darkest moment in my life, when I truly considered ending my life- it was my family and friend’s faces I saw. The love I felt for them was like a magnet keeping me stuck to earth. I couldn’t do it to them, and more than that- I couldn’t be without them. Even when I didn’t see anything else to live for, love was just enough to keep me fighting. 

At 24, I met my rock.

Believe me, I’ve had various reactions to my disability, including some negative reactions, (usually from guys I’d liked previously.  But Grant was different, he wanted to know the ins and outs of it, and almost automatically did things some people would never even think I’d need help with. When I was diagnosed with depression a few months into our relationship, yet again he took it in his stride. When I was on my lowest days and would be sobbing and frustrated, he would (and still does) hold me and rock me, telling me this wouldn’t be me forever. That I couldn’t control it and that he was there. He makes me laugh when I want to cry, he pushes me to live when all I want to do is hide. I hadn’t felt safe with a man for years and suddenly, I’ve never felt safer.

 That’s what love in all its forms does, it heals things that were broken

At times those we love won’t understand what we’re going through. Other times they won’t like you changing- even if it means things are getting better. But that’s when we have to be patient, and try and explain as best as we can.  And that’s why I’m ending with a type of love I’m still striving to achieve:

Self love. 

My disabilities make it hard to like myself sometimes let alone love myself.  Slowly but surely with the amazing encouragement of those around me,  and from being around some inspirational people, I’m starting to gain confidence in myself again and more importantly being more open and honest about who I am is freeing me each time I write or do a talk. 

So Tina, babe? Love’s got  a whole lot to do with everything. 
Nôs da for now,

Anya

“Hey World, here I am!”

Well hello there, thanks for stumbling towards my page and taking the time to  read my ramblings. You can blame the people in my life who told me I should be writing more for this blog. So what better way than to put my story into words, the same story I tell in my Time to Change Wales talks… and it starts with a bubble..

Depression to me is like being in a dark, turbulent sea and deciding whether to struggle just to stay afloat or let yourself drown.

We all grow up in a bubble, at least I did. I geew up with a whole load of brothers (5 to be exact) and 1 sister. So it’s safe to say I felt protected and safe. I grew up in a loving home with two amazing parents who quickly became my heroes. Every night I would perform a montage of musical numbers from start to finish, and they would clap and cheer as if they weren’t hearing “on my own” from Les Miserables for the 100th time. Most nights I’d wake up in my dad’s arms being carried to bed. 

That bubble made me feel sale, but bubbles are fragile…

When I was 14, a small pinprick appeared in that bubble. I realised there was something wrong with my vision and was referred to the hospital for tests. After 2 years of extensive testing, I was told at the age of 16 by a consultant with the empathy of a rock that I might go blind one day. I listened, numb, as he said that I had an eye condition called Retinitis Pigmentosa an eye condition that affects 1 in 4000 people. I got to be one of the unlucky few!  I remember being hit with a whole load of emotions, the strongest being fear, anger and confusion. I looked to the people who always had the answers, my parents, and their faces reflected my own emotions back at me. So, I pushed down my emotions and decided to just “deal with it.” But in my mind, a slow trickle of thoughts started seeping into my consciousness.

You’re going to end up blind… No-one will love you… You’re a burden… They’ll end up resenting you…”

I pushed those thoughts deeper, unknowing that I was leaving them to fester and grow…

My little bubble survived the loss of family members, and the breakdown of a 3 year long-distance relationship but at 21 my bubble was burst when something happened to me that changed me forever.It tore the safety net I’d built over the years to shreds and caused all those dark thoughts and feelings to spill to the surface. It left me scarred, lost and overwhelmed. My thoughts were now an ugly sea that I was drowning in. 

You’re disgusting… It was your fault… You deserved it…No-one will care if you go… Give up… Give in…

That mantra played over and over in my head until I listened. And told myself I had a headache, after taking one pill, I took another and another… until the packet was empty. And then it hit me.

You’re trying to kill yourself- stop.

I was horrified. I made myself sick in the toilet and vowed it would never happen again and I would forget about this. I’d gotten through things before, I could do it again. 

At 25, I became registered blind. My vision had changed to the point where I started finding things harder and harder. But still I tried to pretend that I was coping, that I was “fine.” Every day became a struggle, every task became much harder than it should be. Before I knew it, I was breaking down in a job I’d loved for years. Thoughts or ending my life were plaguing me. I was persuaded by my amazing work family to see a doctor, and as I told her everything I felt myself getting lighter and lighter with each confession. 

When I heard her say I had Severe Depression, it all made sense. Suddenly I had a name for the ghost that had been haunting me from the age of 16. 

“Yeah, yeah but what are you doing now?”

Unfortunately, despite the amazing lengths my job went to so that they could adapt the job as much as possible, I wasn’t able to do it to the level I wanted and as I worked with children’s, I didn’t want to cause an accident due to my vision or I’d have never forgiven myself. So I had to make the upsetting deacon to leave. I’d love to hopefully work in the 3rd sector in the future as I’ve always loved helping people and want to continue to do so.

I’ve become a champion (volunteer) for Time to Change Wales which is a Mental Health campaign run by three Mental Health charities- Gofal, Hafal and Mind Cymru. Their aim is to reduce stigma and discrimination surrounding Mental Health and to encourage people to talk about their Mental  Health  and normalise it. 

My disabilities aren’t visible but does that make them any less dibilitating? I also get much more sympathy about my blindness than I’ll or anyone will ever get for a Mental Health Condition.  That’s not right, and it needs to change. And I’m loving being a part of that change. Through becoming an advocate I’ve truly found my voice, I’ve gained huge confidence and most importantly, I’ve met incredibly strong and resilient people that have me laughing on one breath and crying on another! 

My family, friends and partner have been beyond incredible. They’ve accepted me for me and have given incredible support at some of the darkest times. I have been told recently  that I’ve changed and it’s true. I have. I’m growing and changing all the time.

When you have a support circle like mine, who can pull you out of that turbulent sea…There’s  no need for a bubble anymore.