As my light becomes dark

I intertwine my words and vision into woven light

Sunday, August 29, 2010


When I was beginning this blog, I made it quite clear in my head that my lack of vision, RP, blindness, was not going to be the force that makes me write, but I guess it’s time to start addressing the reasons that have brought me here. There are a few. There are a lot of blogs out there and some really fantastic people writing them, inspiring me to write what I know!!! Secondly, I guess it’s the beginning of forging some sort of history of my writing and track its development, and possibly hope that someone reads it and it moves them, inspires or tugs at a chord. Thirdly I share this remarkable relationship especially through writing with a beautiful person, who teaches me so much and she has encouraged me to stop fearing my words. And I guess the ultimate reason that makes me write and brings me here is the failing eyesight, the pending darkness and me FINALLY through my words and others words deal with it and ACCEPT it. I guess you would expect that after almost 15 years there would be a level of acceptance, but if I be totally honest there hasn’t been. I have been fumbling my way through, having two conversations with myself:

“Good morning, remember be safe, say sorry, take your time, look twice, remember to say sorry, look at as much as you can, shit its dark, pre plan every move, make eye contact, look down, don’t hurry, be grateful, don’t panic, can’t go there, can’t drive, say sorry, smile.”

Or this one:

“if you don’t think about it, it will go away”

Those two conversations have varied and intertwined for the last fifteen years. In that time my hearing has become more acute, my steps slower, my patience with myself has at times worn really thin, I have fallen, hurt myself, become extremely angry and frustrated but mostly I go to sleep every night hoping that it will all just disappear.

Until recently.

It ‘s funny people always ask me when they find out about me having RP are always interested in where the vision stops and the blackness starts because of the loss of peripheral vision. You know there is no point where blackness begins and no place where vision ends, I see what I see, I don’t see the blackness. I just don’t see that step, the small child, the pole to my left, the chair, the man crossing the Elizabeth St at dusk. I just don’t see what I don’t see.

BUT I am beginning to realise that things are changing, that things I used to see I am not anymore. Different forms of light are harder to see in now, wet ground, the city, the time between dusk and dark, very early mornings, crowds, people all in black, noisy environments, all things that this time last year weren’t a problem, now are. I also sense that those closest to me are seeing more of what I don’t see. Comments I haven’t heard in the past, I am now hearing “like you walk like a blind person”. How does a blind person walk?? Its frustrating and angers me to no end. I am at a point where I am in between sight and no sight, and to most I am a normal sighted person who is “clumsy” and “stupid”....hahahah when in fact I am far from either of those things....I am blind......

How do blind people write??

There is a part of me that believes writing is part of what gets me through life. It speaks on behalf of me; it is my companion, and desire and belief. BUT I do fear that without my eye sight how can that be??? How can I put pen to paper, when I can’t see the tools. Do the visions that forge the words fade and there is no inspiration? Do you forget when you can’t see?

I hate not being able to have the freedom to just get in a car and take off,

I hate pre planning,

I hate that every place I go causes anxiety because “will I be able to see”

I hate how my independence is slowly turning to dependence.

I hate running into people because they get pissed off because I have an invisible condition,

I hate how I think about it all the time,

I hate that it upsets me,

I hate that is immobilising and controlling

BUT I love that it has made me more aware,

I love how I try to take everything in visually

I love that it has made my heart warmer

I guess its time to start giving in a little bit, because the “its going to go away” conversation is only holding me back I think. I haven’t got a lifetime of vision ahead of me to just muck around, and it would be nice to get to a place of acceptance when the life of blackness is.

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