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Why I’ve started Through My Eyes

As an intelligent 39 year-old, I have had lots of experience with human interactions. Some awesome, some not so awesome…some downright cringe-worthy!

What’s different about me you might ask? To many I’m just a woman with the same feelings and emotions as you. These people see me as a person. Others immediately see my severe physical disability; how my arms tense up, how I rarely dribble due to lack of muscle tone and the big one – how I’m non-verbal! I communicate through eyegaze systems; I have one for my trusty Windows 7 computer ie Senior Eric and a portable system Baby Eric which is a Surface Pro tablet for when I’m out ‘n about. (Hopefully this year I’m upgrading to a Surface Pro 4, getting rid of Microsoft’s not so finest platform Windows 8). Anyway, you get the gist; I love to talk even though my own voice doesn’t work, thanks to my brain sending out muddled messages to my muscles.

I live at home with my beautiful Mum and our gorgeous furbabies Shadey and Roxy. My Mum is my main carer, advocate and my world. We’ve been through it all; mainstream schools, fighting Board Of Studies so they allowed me to complete an exam over days (at that stage I used a headswitch to type which was awfully slow and tiring), fought to get into uni doing a dual degree (I lasted six months due to not nice lecturers), finally I ended full-time at Tafe with Mum’s support and encouragement. Mum’s my rock, she’s always understanding. I have chronic pain issues which seem to get worse as years pass by, but Mum always understands and even with her mising out on things I never forget what she’s sacrificed (she always assures me she loves being my Mum and wouldn’t ever desert any of her four children). But then, in other areas we certainly make up for this. We love going to concerts, especially Day On The Green gigs! We have some stories about our concert adventures and holidays! I love my Mum, I have no doubt that this is the reason why “Mum” was my first word I verbalised when I was around three years-old, and still is the word I can easily say.

For showers and to get out ‘n about, I have two carers. Currently my main workers are on well-deserved holidays, so for my shower shifts we’re getting fill-in workers. This was the main reason why I’ve started this blog.

Mum always explains to a new worker (because I’m in bed still) that my disability is only physical, “mentally Jacqui’s as bright or even brighter than you and I!”. Some people “get” it, but unfortunately some don’t. Several times now I’ve had a worker who doesn’t “get” it, she talks to me in that high pitch sing-song voice, but speaks to Mum normally. There’s a way to wash my hair without “drowning” me, but this lady’s common sense doesn’t kick in. Whereas this morning I had a lovely worker (who I’ve had long ago) and she did everything with common sense and listening to me by watching my eyes. Most importantly she showed me dignity and made sure she covered my body with a towel when she was drying me. This was bliss! And because I got a little bit sunburnt last week, I pointed to my moisturiser. She put it on my body. Unfortunately other workers haven’t picked up (or just ignored) my eye cues. This morning’s carer joked about not drowning me and said how she’s told off other workers who’s done so to other clients.

I understand most people haven’t come across someone who’s severely physically disabled and non-verbal who’s not intellectual disabled, but in the year of 2017 agencies should educate their staff to at least uphold everyone’s right to dignity.

So if you have a physical disability, I encourage you to write your stories about workers (the great, awful and ugly). Maybe share this blog on your agencies’ page or e-mail them. Your voice is important!

Thanks for reading!
Jacqui

Being A Fur Mum

Ten days ago we adopted little Frankie from Melbourne’s Lost Dogs Home. One of my sisters Monique (aka Neaky) were going down to adopt ONE cat (but ended up getting two after seeing how this particular kitty had bonded with another kitten), and I had kinda chose another kitten for Mum, looking online.

When I spotted our little Frankie (his name was Franklin, but he’s definitely a Frankie) down the bottom row, in a box all alone, I pointed him out to Mum and the lady placed him on my chest. He soon snuggled in around my shoulders, under my chin and started purring non-stop! He’s got the loudest purr. Then gave me chin kisses with his nose. He did the same thing to one of my nephews Quinn, but to Quinnie’s ear. That was it, we adopted little Frankie! Later Mum said, “You knew!” I answered with a smile.

The previous night I chatted about adopting another cat because we have Shadie (our big black beautiful boy) who’s a Mummy’s boy! Mum spoils him with food as he doesn’t shut up when he’s hungry and Shadie was the man of the house. Poor Roxy (our beautifully-natured dog) came to us almost three years ago ago she hadn’t learned to play. She’s around 13 years-old and she loves company but also gets easily scared. Sometimes when she comes in Shadie chases her to Mum’s room whilst Roxy’s whimpering. Mum’s not a dog person but it turned out Roxy and I bonded. I call her “my girl” and Roxy has turned out to love Frankie, even tolerating Frankie to play with her tail and they give each other kisses. Meanwhile, Shadie is still hisses most times when he walks pass my door as Frankie’s in there. You see, Mum was clever and has put up some mesh in my doorway in the hope Shadie gets over his angst. Not yet! (We have the cap spray that’s supposed to chill your cat…maybe a little! So if you have any tricks to make a seven year-old panther to accept a kitten, e-mail me! (Side note: Shadie’s usually a smoochy, playful and maybe gay gorgeous boy, so he’s not usually a vicious type).

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So ever since getting Frankie, he’s been sleeping with me. On the second night he actually climbed between my doona and sheets and slept there. I was so concerned that he would suffocate, I kept waking up to feel him move! I messaged Neaky the next day laughing at myself . Frankie does the sweetest thing sometimes, he curls up right beside my head and sleeps there for halfer,or goes on the other side of me under my arm just to feel my love.30073139_10211965657080390_5703708758926119257_o

I’m a proud part-time Mum of Roxy and Frankie, but still love and deeply care about Shadie. Hell, I was worried he would totally be stressed out by another cat still and am keeping n close eye on him. He’s just being a turd! Haha. I love being responsible of something so tiny though.

Judging and Misconceptions

For a while I’ve been holding my tongue about we, as a collective society, are so quick to judge someone or groups of people for things they choose or have no choice over. We all look different, have different faiths or belong to a religion, living with illnesses which are either present or naked to the eye.

From what I’ve experienced with living with Cerebral Palsy and since my pain has become a daily thing is some people love to judge with what I’m doing with my life.  I’ve had to make decisions to stop doing things, and they weren’t easy decisions.  Some people may believe I’ve become slack because most days I sit in front of my computer, do a little bit of Facebook, chat to friends and family, listen to an audiobook and after lunch watch Netflix.  I wish my life was completely different at the moment.  I wish I could visit friends and family, but the truth is I don’t have the energy and most importantly I don’t wanna risk a nerve episode (aka pain). So I’m HAPPY with what I do, even though it’s nothing really.

People are so quick to judge these days.  Ultimately peoples’ lives are theirs and if they aren’t hurting you or causing you harm, leave them alone.  Life is a gift and people with disabilities or illnesses know this fully.

Looking For Positives

Since my gorgeous niece Olivia was born on November 31th, my outlook on life has been altered. She has given me something to look forward to. Each cuddle, each smile and each chat (Aunty Jac is always a favourite for having baby chats with) have enlightened my heart with pure joy. I was able to hold her by myself when she was first born and that was pure bliss.24946074_10156208875292240_1618981512_o

 

About two weeks ago the men of the family demolished Nan’s shower. My sister Monique (Olivia’s Mum) was in the top room transferring “stuff” (for legal reasons I’m calling it “stuff”) onto Nan’s hard drive. Olivia was asleep in her pram beside me and I took great pleasure of keeping a watch over her. At one point, Olivia stirred so I gently put my hand on the edge of her pram and she grabbed my finger with her little fist. I thought “this is heaven”.

 

Many people look at people with severe physical disabilities and may automatically assume “you won’t enjoy watching us doing….because obviously you can’t physically do it.” What they don’t realise, just being included is enough! This year my goal is to take my older nieces and nephews to the park just a few doors down. That’s a huge thing because since my chair accident I don’t drive outside the house because of anxiety and pain.  BUT, I will do it! Watching them play and just being with them will be a huge honour and privilege.
 

 

New Possibilities

I think when you become a certain age and if you’re finding what you love to do as a profession, you have to force to think “am I enjoying this still? ”

Last month I turned the big 4-0! I feel fortunate to be here. Forty years ago on the 10th of October I fought hard to stay here (or in other words, to be a pain in the arse for those who have made life even more challenging), so I am enjoying living as much as I can.

In year 9, my English teacher said how I would be great at journalism, so that’s what I dreamt and strived to be good at. Now after almost eight years of owning my creation, my baby Gigs ‘n Interviews and close to 250 interviews…I am at the crossroad because of different factors due to my health. I absolutely love meeting lovely people and artists and have made some friends along the way. However, each interview takes me two hours of research and writing up the questions, emails, sometimes catching up answers with agents and then six hours to write up features. That’s eight to ten hours for one interview.

Writing will always be my passion. Hell, yesterday I emailed Bryan Adams’ agent about an interview next year when he tours Australia next year. And I still dream of interviewing Ed K from LIVE and Rob Thomas. But lately I’ve trying to decide the most difficult decision that I know I have to make, but people who know me know how stubborn I am.

Yesterday I received the most beautiful feedback from the artist who I last interviewed, which made me second guess giving up Gigs ‘n Interviews. He said publicly…

            “Now I have done interviews, and then I’ve done truly meaningful interviews.

In initially corresponding with Jacqui James, I had no idea I was speaking with somebody using special eye-detection software to ask me questions. It was only that I learned Jacqui writes children’s books that my interest was sparked enough to learn more of who it was asking the questions.

 

Instead, I was blown out to learn of Jacqui’s strength in the face of adversity. I would say Jacqui faces challenges 99.5% of the population would never know, but that has never stopped her passion for writing, and importantly chasing her dreams. If that’s not inspirational I’m not sure what is.

 In starting this next chapter, I really want to get out of my comfort zone and get a brand-new perspective on things… the people I interact with is a large part of that and I’ve been really humbled by chatting with Jacqui.

 Thanks Again Jacqui!

So, people like Skotty makes the decision of giving up Gigs ‘n Interviews sooo extremely difficult! If I keep doing Gigs ‘n Interviews, I think I will have to cut back even more, which would be hard for me because I’m a doer. On the hand, if I continue I’m voluntarily allowing myself to be exhausted and in pain after doing everything I have to do for a successful publication of an interview. One of my closest friends said how I have every right to do absolutely nothing due to my current situation. But it’s not within me to do nothing. Don’t get me wrong, on my bad days, I do what I need to do in the mornings, then after lunch I kick back and watch Netflix!

However, I am excited to think of doing my backup plan and that is do websites for people. After finishing Year 12, I took a short course in website design. From there I found the passion for making my own site with Dreamweaver, which I admit was challenging at first but with my good friend Jono on the other end of the internet, who’s a genius and owner of Proton Creative, I designed my first personal site. The fact I’m anal (thanks to Mum), I wouldn’t rest until everything was perfect. Then came WordPress! Jono and I learned as we went to setup Gigs ‘n Interviews.

Who knows what the future holds. I guess sometimes you have to let things go!

The Alien Stare

I have been hesitant to write this post. This morning I ran it across my good friend and he was shocked to hear what I’m about to tell you.

Two weeks ago coming back from the doctors, Mum left me in the car, while she went into the chemist. My communication device needed to be physically tapped (the specialised software sometimes gets “stuck” behind a Windows program so someone has to press on the program on the task bar for myself to gain control with the eyegaze again, so I was trying to get my hand to touch the screen, which is difficult when you have luque rods in your back).

A mother and girl who looked around ten years-old (maybe even older) came to the car parked next to us. The girl looked at me as I was an alien and stared. I’m used to some kiddies doing this (I understand, they’re curious or it’s just what some kiddies do), but what the parent did was unexcusable! The parent looked at me with disgust.

So I stared back at the parent who continued to look at me. Once the girl was in the car, her gaze was fixed on me. Finally the parent instructed the girl to stop looking at me, but whilst reversing out, the parent continued to stare. I wasn’t well, so I just stared back with a little smile (while thinking two words).

I really hate the thought of children being teased for being a little bit different. My nephew was born with clubbed feet and one working lung. You wouldn’t know this looking at him because he does everything what other kids do! However, sadly he was bullied by older kids and hadn’t said anything until recently. This broke our hearts because Mum and I know how cruel kids are. Some bullying events stay for you forever. Luckily when my sister brought it to the Vice Principal’s attention, the situation was swiftly dealt with.

So if you are a parent or guardian of children of ANY age, please make time to sit down to have a chat with them. Explain how everyone has feelings and it’s not cool to stare and tease someone who looks different.

A Fortnight Of Goodness

About two months ago my new wheelchair was approved by SWEP, which meant they had their allocated amount of $8,000 to go towards the total amount of $26,680! It was a day of mixed emotions. At that stage the outlook of finding the other $22,680 was very grim because all agencies are crying poor because of the NDIS coming into our region September 2018.

I must admit, the thought of sitting in this uncomfortable chair for another eighteen months to two years sent me into depression, although I hide it very well. I constantly remind myself “there’s always people worse off than you”. I chatted to our dear friend Andrew Brown who has a beautiful daughter who has just finished a year of cancer treatment (Go Hayley…you’re a superstar!) and we were talking about fundraising options to raise the $22,680. I couldn’t go through with it as I told him I had no right to whinge. He said I did because he knows how strong my Mum, sister and I are from a past tragedy. He said I deserve to be comfortable and knew how much I needed the chair to live my life without the fear of jolting my back. I still couldn’t bring myself to setup a crowdfunding page. It’s just not Mum and I.

Mum spoke to a kind woman at DHS explaining our situation. We didn’t really expect to get any money but the lady placed an internal request due to my pain issues and how much pain meds I’m on. She reassured Mum she would do her best.

On Friday, June 23, around 10am, Tony was here assisting me and Mum went out of my room taking a call. As soon she began speaking, I just knew by the way Mum’s voice crackled with emotion. Then I got emotional and excited. Luckily Tony knows me extremely well and we can communicate without my eyegaze system. I pointed to my commode chair then pointed to the bathroom where my wheelchair was. Tony guessed about my new wheelchair and hugged me as tears welled up in my eyes. I couldn’t believe it! I still can’t! DHS said the order was placed that day. So within three months I will be sitting comfortably in my new chair.

Earlier this year I approached Link Magazine about the piece I wrote regarding good and bad workers, I thought the more people in the disability field read something like my article, the more chance peoples’ attitudes might change. The editor asked if I would be interested in writing a piece about Cerebral Palsy instead for their June edition. I was a bit hesitant at first because in my mind Cerebral Palsy isn’t my disability; my neuropathic pain is. So I asked the editor if they wanted a fairy-floss story or a warts and all article. They wanted the second option. When I wrote it, I was in a bad place; my pain was out of control and I couldn’t see my new wheelchair coming anytime soon. However, to my surprise I have received lots of positive feedback from people reading my article.

I wish to thank my Mum who always fights for me in every aspect of my life! Without her, there wouldn’t be a new wheelchair and shower/commode chair (I’ve gained around 5-7kg’s since my surgery last August so I have to squeeze my hips into my commode which I’ve had for many years!)

Will

Some days I feel like I can conquer the world! Some days I’m all go and do everything I want to achieve.  I remember when I was younger (before everything changed in 2000) thinking I want to walk the length of our then court. I thought “I can totally do it!”. I didn’t, of course but my will was so strong!

Today my Mum was getting her tattoos to celebrate being ten years cancer free! I was with my friend/worker at a shopping centre five minutes away walking distance. I knew it was cold outside, and walking to the tattooist would have bumps, would more than likely cause me pain tomorrow or the next day, but I thought “hell with it!”. So we walked to the tattooist to join one of my sisters to watch Mum getting her tattoos! Ten years ago Mum was brave when she told cancer to f*ck off twice, so some days I remind myself how tough she was and tell myself to “suck it up princess!”

There are some days when I can’t be brave at all. This is when I wake up in pain and my five to six cocktail of meds don’t touch the zapping pain much, until lunch I have an Endone or Panadine Forte because I like to do what I have to in the morning without being clouded (although since January I’ve been on a stronger dose of Lyrica so that’s affecting my mental capabilities which I absolutely hate but as Mum said it’s keeping me sane,) then after lunch I have an Endone and chill for the afternoon.

Chronic pain makes you feel not brave, and sometimes cowardly. Mum and I are planning a trip to the UK next year to travel around Scotland and Ireland (and maybe Italy). While this is very exciting and mind-blowing (as we will be standing on the same road as “Gerry” aka Gerald Butler in Ps. I Love You), on my bad days daunting as I know there will be much pain involved from the flight and beyond.

Some days (most days) I have the attitude “f#ck it” and plan things with caution. I often plan things with limitations, knowing there might be consequences to do the simplest acts. I often have ideas to write a piece or interview questions for artists or catch up with friends, but then remind myself I can’t due to the winter nights or the bumps in the taxi. This is when bravery escapes me and I hate the fact I need to think with caution. This has become my life now and I often wonder what it would be like to have my old life back. However, this is my life now so I’m going to live it!