This is why I don’t write fiction

Almost 2 years ago I did a creative writing course. It was the first course I had done since losing my eyesight and I wasn’t sure I would be able to manage it. Luckily the college was able to arrange an absolutely terrific teacher who not only photocopied all the course materials to larger print for me, but who also allowed me to smuggle Dad in for extra assistance. To date I think this is still one of the most enjoyable things that we have done together.

 

We all had to provide an excerpt of what we were working on to the class for critique. Everyone else had a novel in the works (some of which I am still eagerly anticipating) but I, preferring the more instant gratification that comes from blogging did not. I could have submitted a blog of course, yet for some reason I decided to give fiction a go.

The result is below.

 

THE PROBLEMS OF DR ANDERSON

Sweat poured from his brow, the beads so large he would soon be sitting in his own private lake. He moved to the window in search of relief, but not even a howling gale could’ve stemmed the flow. Yes, it was hot and the air-conditioning unit was out of order, but this wasn’t why he was sweating.

He began to pace, glancing every few seconds at the entrance to the ward . The moments dragged by; tick, tick, tick. Any minute now he’d know. His fate would be sealed.

“What if she dies?” he thought to himself. “Oh God, what if she lives?”

Dr Napoleon James Anderson was a smart man, a rocket scientist with a doctorate in physics. But there was no point in asking him to change a light bulb or hang a painting, it would just never happen. Alas, if only Janet had realized this before the wedding.

 Not that it would have made any difference, with his blue eyes and chiselled jaw; she still would have married him.

 Lost in thought, Napoleon did not notice the ward door finally open. As he looked up, a smartly dressed young woman wearing a stethoscope around her neck and carrying what looked like a medical chart  came striding purposefully  toward him. It was then an unexpected thought arose: “She’s cute; I wonder what she’s doing later.” He shook his head vigorously, now was not the time.

“Mister Anderson I presume?” She said, a hint of a smirk crossing her lips.

Pffft, he thought. “The Matrix, How original.” Doctor actually,” he said, getting to his feet, a note of irritation in his voice. “How’s Janet, is she dead yet?”

Caught off guard at Napoleon’s apparent lack of sensitivity, the woman continued.

“My apologies, Doctor Anderson” she said, before regaining her composure. “Regarding your wife, I have some good news and some bad news. The good news is, Janet will live.”

Napoleon tried to appear relieved . “And the bad news?”

“Well Sir, ahem, Doctor…”

Perhaps she wasn’t so cute after all .

“Your wife…”

 Bang! The ward door flung open. There stood Janet , closely followed by two confused and harassed-looking nurses. Her dressing gown hung  open, revealing her once luminous white skin that was now a light shade of green. Her eyes were flaming and her nostrils were flaring. She looked like a woman possessed. . 

 Napoleon gulped, was it too late to run?

 “Hi Janet,” he said, inching toward the door. “You’re looking well”. “You’ll have to excuse me, I was just on my way out”.

 

I think I should stick to what I know, don’t you?

 

 

xoxo

 

 

Born to be blogging

 

 

Last night I realised that I may have (if you’ll be excuse my arrogance) been born to blog.  In fact, I may have been blogging since before blogging was actually a thing.  Nothing would amuse me more than starting a brand-new diary (usually the day after my birthday or Christmas), writing pages and pages of my inner most thoughts and then forcing people (usually my older cousins) to read my ramblings, whilst I sat cross-legged on the floor in front of them, waiting to get a laugh. The writing was never really that meaningful, usually just my tween aged fantasies of marrying the boy I loved that week and general titbits about how awesome I thought I was (obviously, I used to write fiction). I would always write in the style of someone who expected their work to be read by others. 

 

I was all about quality not quantity at that time though because although I would write lengthy entries, there would only be two or three in the book before I would get bored and leave the rest blank.

 

 

There was one person I couldn’t bear to read my diary though. My brother. To be honest I don’t think he really cared what was inside the diary but the fact that I was so desperate for him not to get his hands on it meant that he did everything he could to try and get at it just to tease me. Ironically, I don’t think that he reads my blog. I think that forbidden fruit must taste better.

 

 

To the best of my knowledge all of these diaries have long since been thrown out.  Thank goodness. I suspect they would be nothing short of cringe worthy 

 

 

My blog has a slightly larger audience than the one my diaries had, and surprisingly people come to them willingly, and from all around the world.   People give me feedback, share their experiences and teach me things I didn’t know.  I have had people laugh with me, cry with me and give me advice. People share my blog and recommend it to others and for that I am immensely grateful. It’s been almost 3 years and almost ninety posts (I now work on quantity rather than quality). But I’m not done yet. 2016 was a busy year that saw a number of major changes in my life.

 

Thank you to all who have supported me and my blog since its inception. My aim was to highlight disability issues but I have also gained a confidence through blogging that I never expected.

 

In 2017 I intend to check a few more things off my bucket list and as usual jump on my soap box and rant.  I hope you will come along with me!

 

 

XOXO 

 Apologies for the formatting. It’s WordPress not me. Although I did say I now go for quantity rather than  quality!

Are You Advocating to Me?

I once wrote an article for a nationally syndicated publication. It addressed how intrusive and presumptuous the general public can be when inquiring about the intimate details of elements of the life of someone with a disability. It was the first article that I had ever had published and I was chuffed to receive a number of messages from people  relating to the examples I had posed.  It was thrilling to note that so many people got me.

 Then I received a message from a reader to tell me that the first line of my bio, which read: “Nina Butler is a disabled writer from Perth, Western Australia” was incorrect. Now, I didn’t know this person and as far as I knew, they didn’t know me either, so I was baffled as to how they would know where I was from. As it turned out though that wasn’t where I had gone wrong.

 

My mistake it seemed, lay within the statement that I was a disabled person. Am I not disabled? I wish someone had brought this to my attention earlier. It would’ve saved me a lot of money on mobility aides. Apparently, I should have described myself as “a person with a disability” and not a disabled person.  This is “person first” language and by not using it, my bio (which I wrote) was very offensive. To who? Me? Quite apart from the irony of presuming to tell me how I should describe myself given the topic of the article they were responding to, the message really infuriated me because it came from someone who did not have a disability themselves (which they went to great lengths to point out).  That’s not to say that they are not entitled to an opinion but if the statement does not relate to you why should you be offended? It really irks  me when people advocate for a group they do not represent. 

 

I don’t really buy into the whole political correctness thing. You’ll never hear me wish someone a “happy holiday” unless of course they are actually going on holiday. In which case, (because I’m so cultured) I would actually wish them a “Von voyage”.  It is my belief that everyone has the right to identify in what ever way makes them the most comfortable. I have heard of disabled people referring to themselves; as specials, Crips, Mutants, or most ingeniously of all, by actual given name. And good on them. Whatever makes them happy.

 

My point is, in telling me that I am a person first or by being offended at the way I, as someone with a disability, identify myself , it actually tells me that you do not see me as a person at all.  But rather, something in need of a label so that it can be pigeon-holed and you can feel more at peace with yourself. Sorry, that’s not my job!

 

I’d rather you take heed of how you speak to me, not of me. A person with a disability is not hard of hearing unless they are actually hard of hearing. So there’s no need to shout or slow your rate of speech unless you are asked to.

 

Also, a disabled person is not necessarily intellectually impaired  so there is no need to speak to me in the shrill voice you would use when speaking to your dog, cat or pet iguana. Even if I was intellectually impaired, still talk to me just as you would speak to anyone else. It’s called respect people!

 

Speaking of speaking to me.  If I approach the counter, sit in front of you when you call for the next in line or into your establishment with a clear purpose, don’t look through me in an effort to find someone else to address. Even when I am with someone else.  I am always looking for an excuse to re-enact that famous scene from “Pretty Woman”. Don’t give me the chance.

 

Most of all,  if you see me out please don’t come and congratulate me. Or feel the need to give me encouragement. If I was as uncomfortable with my disability as you seem to be I wouldn’t be out in the first place.  .

 

This year, I have learnt that is better to be happy than it is to be liked by everyone.  I have learnt the difference between those who genuinely want to spend time with me and those who do it as a public service. I have learnt that I don’t need to allow myself to be the butt of jokes just so that I can fit in.  And I have learnt that I am allowed to pull someone up if I am not being treated justly.   I realise that in standing up for myself I may come across as  rude.  But I also realise that my feelings matter too. 

 

 

XOXO 

I’m Dreaming of a Sight Christmas

I’m dreaming of a sight Christmas, just like the ones I used to know.

When I could tell if my bench tops don’t glisten and my ears could listen to hear all the questions on my favourite show (The Chase). 

 

I’m dreaming of a sight Christmas, each time I bump into a wall

When my loved ones leave their shoes out or put something in the wrong spot, and then I have a fall.

 

I’m dreaming of a sight Christmas, as I decorate my Christmas tree. I have all these baubles in different sizes that I keep dropping and so, they roll where I can’t see.

 

I’m dreaming of a sight Christmas  with every card I need to type (can’t work out where I left my pen). May your days be merry and bright and may all your Christmases have sight.

 

XOXO

A Guilt Trip is not a Holiday

Damion and I have been dating for almost 6 months now and I’m proud to say that we have never had a cross word pass between us.  Having my own place now, he has been staying with me a few nights a week and the new arrangement has seen the dynamics of our relationship change slightly. 

 With this, comes the unearthing of habits that I never knew he possessed.   My boyfriend is completely incapable of sharing.  He refuses to share; the cooking, the dishes or making the bed. He won’t take turns putting the rubbish out and sometimes he won’t even share in the laundry.  No, he insists on doing it all. He is also extremely bossy. He is constantly ordering me to; sleep in, put my feet up and relax, and, he is constantly telling me that I’m beautiful and that he loves me. I mean honestly, the nerve!

 My family and friends are very unsympathetic. When I tell them about the gross injustices in my relationship they just look at me and say “oh Poor you” and something tells me they are not being genuine.

 My work colleagues are the same.  I have only been at that job for four months and three of those months have been spent on sick leave. I wanted my boss to rant and rave at me, to show her annoyance at my having let the team down, especially when they saved me from certain unemployment. But she didn’t. and neither did anyone else. Instead, when I tried to go into the office too soon, I was simply told to go home and relax and “come back when you are better, not when you think you should”.

  Months ago, when I was preparing to move, trying to impress in my new job ( whilst dealing with the emotion of having left the last job even though I was pretending I was not bothered by it at all), exercising madly so I would be strong enough to live alone and spending every spare moment either talking to or hanging out with my awesome new boyfriend, I dreamed of taking my long service leave.

 

I was trying to be everything to everyone and then I got sick so I ended up becoming nothing to anybody. I did get my long service leave though. Problem is, I now feel so useless, bored and guilty that relaxation is almost impossible.  Not that I haven’t tried mind you. I promised myself that I would begin practising meditation every day (I have been listening to “Eat, Pray, Love” again)  and I did… for two days in a row. But then I lost interest

 

This is not helping my recovery. If anything it is the cause of all the extra things (Cold, Gastro, ear infection etc) that keep cropping up during this down time.  I keep complaining to everyone that I am bored and, (usually in a wheelchair) they take pity on me and we go on outings. But I am too scared to enjoy myself, I am supposed to be in recovery after all.   Worst of all is the guilt that comes from writing, which I can only do at the moment with the help of a dictator ( the electronic variety not Fidel Castro) and my dad.

 

I have decided (yet again) to make a promise to myself.  I am now going to give myself a break and not worry about every little thing every second of the day.  I have adopted the mantra  “I have the rest of my life to  (insert description of task here )” and “my life is already awesome, I do not have to constantly be keeping up with the Jones’s”.  I call this “The Damien Theory” and when you have a mortgage, it beats the hell out of paying $160 an hour for counselling.

  

XOXO 

The Princess and the Pee

loo

After almost two years of patiently waiting, I am finally officially a home owner.  The apartment isn’t exactly the one I saw as a demo though. I had been told that the one I was signing up and paying a king’s ransom for would be “exactly” like the one I was shown. But when I went for my inspection prior to settlement there were some significant differences. To say I was disappointed would be a gross understatement.  Sadly, as I signed the contract in good faith I just have to live with it. 

 

Oh well, if you can’t live in the one you love, love the one you’re in. Might have been a bit easier if, whichever tradie had used my loo prior to lock up had bothered to flush it though. Or am I just being a princess? Luckily, despite my limitations, I didn’t have to have any alterations (except for the lowering of a few shelves) done before I moved in.  I did however get a very pretty decorated toilet seat to replace the standard white one. Officially this is because a completely white dunny surrounded by completely white walls means I couldn’t find the toilet. But really I just wanted a fancy throne.

 

My eyesight is particularly bad at the moment due to a recent illness so maybe I should have left the decorating for a while. But of course I didn’t, and I’m wondering if I’ll come to regret it. Every piece of furniture and all of the soft furnishings are super bright and colourful, (I used my Wonder Woman doll as the inspiration). Contrast was the order of the day to make everything easier to see  and it certainly seems to be working thus far. But I suspect my choice of electric blue curtains  with my multi-coloured lounge suite  might fall under the category of “seemed like a good idea at the time” as my eyesight improves.

 

I’m surprised at how easily I’ve taken to living on my own.  Granted, it has only been two weeks, But other than the plug getting stuck in the bathroom sink the first time I used it (requiring a plumber to fix it) and my brand new washer/dryer refusing to dry my clothes but instead washing the same load four times, there have been no major disasters yet.  That is unless you count the fact that all my lovely white smalls are now light blue due to one of my royal blue towels bleeding. On the bright side, at least they match with the decor now.

 

There is some peril in being a wobbly and legally blind woman living alone however. Especially if your appliances are out to get you…

 

The other night whilst getting ready for bed I was enjoying my favourite podcast, (The Dollop) on loudspeaker rather than headphones (yay for single living). Suddenly I heard a random woman’s voice coming from my kitchen. “shit” I thought to myself. Had I neglected to lock the front door properly?  I crept into the kitchen and checked the door. It was locked.  I scanned the room and everything was just as I’d left it so I assumed it must have been my over-active imagination (in the interests of full disclosure I had in fact forgotten to take my meds) and went off to bed.  As I reached for the switch to turn off the light something heavy ran into the back of my legs and an alarm went off.  I jumped in fright and turned to find that Rosie, my robotic vacuum cleaner (named after the robot maid owned by the Jetsons), had decided that the middle of the night was a good time to do some spring cleaning.   I scrambled for the remote and began randomly pressing buttons in an effort to get her to go back to the docking station. But like a petulant toddler she refused to move and I couldn’t lift her. I tried everything I could think of (including bribes and threats)Not sure what did it in the end, but after what seemed like an eternity she sprang to life and decided she’d had enough. Phew!

 

I’m sure that eventually I’ll get the hang of this independence thing. 

 

XOXO 

 

Nina – Marie Butler

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PS Apologies for the formatting. WordPress is playing up again. 

Cochlear: The journey continues

 

 

I have now had my cochlear implant for a little over nine months and I thought it was about time to give everyone an update on my progress. 

 

You may remember that I had the device switched on in early April. I was able to recognise voices and some words almost immediately, which is apparently rare, especially for someone who has not had hearing in that ear for such a long time. But the journey was far from over.

 

I knew I would have to do some training of my new-found hearing in my left ear but I had no idea what that training would involve. Would I have to lift weights with my earlobe? Thankfully no. Turned out that the standard training is by listening to audiobooks. They gave me Anna Karenina (which I had never read) and instructed me to listen to the book on CD whilst following the story with the physical book in my hand. The idea is to match what it is that you are hearing with the book in front of you. It took me back to the 1990s where as a child I used to listen to the gingerbread man story on cassette tape while following along with the book. Only this one didn’t have an annoying chime that sounded every time you needed to turn the page.

 

I am legally blind and I couldn’t see the text in the book so this method did not work for me…

 

Then they gave me a book of exercises designed to help me learn to hear. For example, one exercise instructed me to repeat two words that sound very similar eg. duck and truck or Ben and sin. Problem was I had to find a willing participant to do the exercises with and because of a lack of volunteers/lack of time/I am just lazy this did not work for me either.   You can’t do these things without amassing a curious audience and between my embarrassment with that and the standard frustration of both parties when a parent tries to teach a child anything, (Dad was my volunteer) I gave up in a huff. 

 

Eventually I devised my own training regime. Because of my low vision I have the voice-over switched on to all my devices i.e. iPhone and iPad etc.  In doing any training exercise I had only my cochlear implant device on and not the hearing aid on the other side so when using these devices I could only work them using what I could hear from my implant. I also have an extensive library of audiobooks of my own, most of which I have now heard so many times I can recite off by heart. This mean that if I listen to them it is the same as if I was following them with a physical book. 

 

Once the device was switched on for the first time I had to attend weekly adjustment sessions for the first four weeks. Then every fortnight for the following few months and every three months after that. Each involved a type of hearing test which as well as measuring how much I could hear, also measured how well the nerves were reacting to the implant. Adjustments to things such as pitch and volume can then be made accordingly.

 

On the first day of having my implant switched on, I had a constant background noise that sounded as though I was receiving a transmission from space. I could hear the odd word or two but not hold a conversation and all words sounded as though they were being spoken to me from the bottom of a swimming pool. Now the transmission noise has disappeared (this is because my nerves are getting used to have anything else on the left side), I can identify more sounds and words and if I need to I can even hold a conversation. (all be it a slow and stilted one).  The words no longer sound as though they are coming from the pool. Now people just sound robotic. I also find it easier to be in noisy situations and I find it easier to participate in group conversations.

 

The actual device that sits on my left ear is a bit annoying though. I can’t fit it and the arm of my sunglasses on my ear at the same time, so often it’s just hanging from my head like a bizarre earing. The magnet under my skin ensures that it will not fall off. However if I flick my head forcefully enough it will go flying. I have done that the few times so far and it has resulted in my companion having to go and search for it in whatever shrubbery or clothes rack etc. that I happened to be standing next to. Miraculously I have not actually hit anyone with it yet.

 

There is still a lot of work to be done and the more I do the better the results that I will get. I am really happy with how it’s going so far and it has actually made my life easier already. I know there is debate over whether or not a cochlear implant is worth having. In my experience I think it is.

 

XOXO

 

Nina – Marie Butler

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