As my light becomes dark

I intertwine my words and vision into woven light

Thursday, October 11, 2012

A touch of reality....

The writing of this piece has come through my constant inspiration in music.

The lines "have a monkey", "sit with the devil" "walk the wire" float in my mind and all come from the album Rattlin Bones, a co-written album by Kasey Chambers and Shane Nicholson. I know here I go again with Kasey Chambers, I love her music!! This album is a constant companion and will always be!!

So we all, at some point are faced with a life changing/altering experience/challenge that will test our measure/person, that's what those above lines represent for me.

It could be cancer/losing a limb/self worth, having your heart broken/shattered your innocence taken/eroded.

For me it's living with a visual impairment and the always changing/unpredictable darkness/light. Not only do I live with an impairment I live with pending blindness/darkness. Every so often I am reminded/notice I loose a little/a lot of my sight, the dark/darkness becomes greater/darker.

I am controlled by what I see/miss, I am two people with light/dark I am not predictable/reliable. On one day I may walk on a set path that I walk each day with ease/confidence the next day I will walk with hesitation/caution because of the level of darkness/light. On day one/two I may spot you in a crowd but on either day one/two I won't see you two feet in front of me all because of the darkness/light.

Some days the world seems flat/hollow/grey/shadowed or it can be glarey/bright. Neither is a comfortable state/place. Very rarely is the world with definition/depth each moment is faced/attempted with a level of uncertainty/unpredictability.

This is tunnel vision, the flatness/world closed in state. Life/visions have to squeeze into a tube/tunnel like state/space, its like someone turns down/up the lights and you wait for your eyes to adjust, except they don't/cant. You cant run your way through the world you can only walk/stumble/feel/sense your way through it.

I'm visually impaired.

Not blind.

There is a difference/expectation. The difference/expectation is that I can see because I look/appear like I can see. But sometimes I can't. I run into things/people I trip/stumble/fall always mistakingly/misinterpreted for clumsiness. I can guarantee any visually impaired person is not clumsy the world is tackled with caution/care.

I wish I didn't wish/agonize/worry and at times be consumed by fear. I wish that I could be more positive/grateful for at least having had vision. Honestly, I think/know I am mostly focused/consumed with seeing/navigating/watching that I at times forget/miss/don't notice/appreciate the positives. I know I am ungrateful because I feel it's robbed/taken away my independence/youth. Its taken away trust/reliability visually and internally/personally.

And as I stop I just realized it has given me passion/love/devotion to the written word. I write. I HAVE to write/feel this, because this is the moment/thoughts that make up who I am/was/can be/will be.

Lastly I know/feel this ultimately makes me a better/open/accepting/fortunate human being. I may consistently write about my vision/sight/darkness/light/shadow but this is the process that saves me from losing my mind, because it's this stuff that makes sense of the world. I've been waiting for the time when my words will dry up/fade/ but while I continue to try and understand the world/people/the heart/my heart I will continue to write/create.

So my monkey can walk the wire with me a little longer....


  1. Hello Sarah I hope you are very good, nice even read your blog and know whereof we have people with the same concern, and so many places in the world. In my case I was diagnosed in 1996 at age 18, being a great reader of every book that was put in my hands, and run bike everywhere. began the decline of my vision, but I can still read large posters, and not paper books, just reading on the computer, but costs much assume this condition, assuming I have helped this disease, even more when even these finishing my studies laws.

    My best wishes to you, the music is a great company.

    A hug from the end of the world


  2. Hernan,

    Thanks so much for your words, this is truly a blessing to have you read my blog....I wish you all the greatness you deserve, law, what an amazing thing.......

  3. Sarah, I feel your words. I can't relate specifically but I can imagine how daunting and scary living like that could be. I feel I want to tell you so much like, be here now, enjoy what you have when you can and find ways to channel your fears and uneasiness. But it seems you have found a way to do that quite well. I probably could learn so much from you, your story, that I could bring into my own struggle through this life. I have spent the last few years working through the junk that life throws at all of us, I also chose to write about it. I discovered it to be healing not just for me but for others. Please continue, you have this gift to use. And thank you for finding me this morning on instagram. Pinky

  4. Sarah- I was diagnosed with Retinitis Pigmentosa just four years ago, at which time I was already legally blind. My vision continues to deteriorate, and I cycle through the same emotions, fears, and concerns that you write about. We aren't alone. Keep writing. And I'll keep reading.

  5. Sarah, I just found your blog, please keep writing. Once when i was in college, as brief as it was, I once had to write a paper for one of my classes. I was in my thirties, when this took place. I found after completing the writing, I actually owned up to admittance to the disease, my trials and stumbles along my journey in life up to that date I really hadn't. I got a supprising A on the write-up, so I decided to show my parents. My parents were overwhelmed with some of my childhood trial's and trivia's. As you might guess, I never told no one of my issues. It brought tears to both parents eyes, as they never knew the challenges set before me. An example: my father never really wanted me going to any ballgames or such. He would say to me, if you go, you will have to walk. The challenge was on. Not without fear, I would force myself to except the challenge before me, of getting home in the dark. I lived one mile down the highway, which only about half the way had a sidewalk, then after reaching my next road, I had another mile of oilchipped pavement to wonder down. Sounds easy, but with no yard lights, and a very deep creek just off the edge of the pavement, it was a very difficult task to even coninplate. I often volunteered to take my younger brothers with me as they beame my eyes, no knowing. I survived the walks, but the challenges were often scary. As when someone would stop and offer us a ride. I always made my brothers stand behind me, always refusing all rides, for I could not see who they were, so I always refused any ride, for our safety. There were nights I faced this challenge alone for a two mile distance. Sometimes, this second mile was more than this child could endure, not the fear of the dark, rather the fear of stumbling off into the deep creek along the roadsides edge, I would cry, stumble back towards the highway with the overwhelming feeling of defeat, and wonder back up the highway where a cousin lived and bef to spend the night with her or ask my mother if dad was sending her to town to get some sweets, and if she could here the fear in my voice, she somehow would find a reason to go to town, so she could pick me up. My father cried as he read my paper, ashe looked back, never knowing that I couldn't see. I always was referred to as the bull in a china shop, or clumsy as hell. Never paying attention, the list goes on. You learn to live with such issues, cause most will never truely understand the challenges we deal with in everyday life. I hope you continue to write, I found some peace in it as well as O slowly began to except my issues. Apparently I was born with this, never had any nightvision, I have extreme tunnel vision, but thankful for what sight I still have. Very little, but I will say, with as bad as my sight really is, most still don't have a clue, guess maybe that childhood detemination to trudge forward, has helped me to accomplish way more than many with the same amount of vision. Keep writing my friend, and God Bless You..................Hugs