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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

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!

Medical Cannabis

When you depend on strong nerve and muscle relaxant medications to continue to live as comfortable as you can be, you constantly ask yourself “how did I become like this?”

Up until I was about 26, after four years of excruciating pain from an incident which caused nerve damage, soft tissue damage and a lower back injury I was referred to a lovely neurosurgeon who specialises in people with chronic pain, many with physical disabilities.

I’m still under his care and whenever we see him he says “Jacqueline, what am I going to do with you?” Haha. Like within most aspects of my life concerning my disability and now health, I’m constantly told I’m “one-of a-kind!” Yay for me! But there’s gotta be someone out there with Cerebral Palsy, with severe scoliosis and luque rods…plus nerve damage which causes chronic nerve pain 24/7. Right? I’ve googled and searched. Unlike myself who’s extremely lucky to have communication, there’s not many with this luxury.

Back to the medications, most days I can’t wait to be showered, dressed and get my hair dried, just so I can have breakfast so I can take my meds, so I can bare the pain. On my really bad days I can’t even stomach eating breaky because my stomach’s churning from the pain.

There’s been lots of debating about legalising medical cannabis. Unfortunately like Gay Marriage, Australia’s very slow at accepting cannabis (a herb!) as a medicine; a much needed medicine to ease a whole list of illnesses and diseases.

To me, something that reduces seizures in CHILDREN is a no-brainer! Something that may help cancer patients with pain management and helps them to feel like eating again SHOULD be available freely. Something that reduces pain, spasming and minimises the need for prescribed medications for people with chronic pain and/or disabilities should be available now. Instead the Federal Government are dragging their heels and it seems like their interest in this manner could be about financial gain.

Thank God for Daniel Andrews, the Victorian state minister who started the ball rolling earlier this year when he stopped loving parents who are giving their suffering children cannabis oil from being charged. This oil is completely safe and greatly improves their kiddies’ lives. I know parents who would do anything to see their child pain-free and/or to reduce their elliptic fits. I’m far from being a child (I’m 40 in October), but I know somedays Mum wishes she could help me control my pain better.

Last night we watched the awesome documentary on SBS called “The Truth About Medical Marijuana” where it showed how in Israel people with illnesses and chronic pain are prescribed individual doses for their specific needs. Their system works! Peoples’ illnesses and chronic pain are eased. Cancer patients’ nausea dissipate so they can eat! And the “Professor” of medical cannabis treatment has been doing this for twenty years! TWENTY YEARS!

So I really hope by writing this post Australia legalises medical cannabis ASAP! My medications have cost me having a colostomy and a constant foggy brain. More to the point, I don’t wanna think “this is it? I can’t pursue my dreams due to my pain?”

 

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Spontaneity And Pain

‌I gotta admit, this year hasn’t played out how I invisioned it. Sure, I’m still recovering from major surgery in August last year, and I’m still healing (probably for another six months, but in my head I knew that would be a twelve months recovery period.) However, this isn’t slowing me down… It’s my chronic nerve pain that’s interfering with our lives!

Last week after a very bad few weeks of Mr Zappy (I get zappy pain in my leg and foot, just imagine having fierce electric shocks every couple of minutes…. You get some respite from various painkillers but it only last 2-3hrs.) This has become my life this year. Some weeks, especially if Mr Zappy has hung around for weeks and weeks, I get very teary because I’m tired and just want the pain to fuck off!

Back to last week, my friend Francis and I were looking forward to seeing Logan on Friday night. Until the Thursday I had Mr Zappy but was determined to make it Friday night. Francis travelled to Fountain Gate (the closest cinema to me because travelling long or short distances, going over pot holes, speed-humps, braile bumps…you get the idea) can set off Mr Zappy. So Francis kindly did that for me – he “gets it”. So after we had dinner we went up to the cinema, Francis bought his normal – popcorn and a drink and we headed around to the ONE and ONLY lift to find out it was out of order and had been for two days. I was pissed, I’m still very pissed.

This week Mum and I sent an e-mail to Village Cinemas. They swear there was a pop-up last week warning people who clicked on the wheelchair seats about the lift. There was NO pop-up otherwise Mum wouldn’t have purchased the tickets!

In our letter we explained how people with many disabilities do not have any ‌spontaneity‌ as we have to organise workers or friends, transport and for some of us our health is extremely limiting. Earlier this year I had to stay home from my Aunty’s daughter’s 18th little get together because the next night we had Bruce Springsteen And E Street Band. Halfway through On Sunday Mum and I are seeing the gorgeous Adele at Etihad Stadium and I know I’ll probably have Mr Zappy for days after it, but I’m still looking forward to seeing Mum’s face when Adele sings her first note.

They Joys Of Shopping

I LOVE to shop! Many women and men do! There’s nothing better than browsing with a friend and/or window shopping. In January I met a friend at Chaddy (aka Chadstone which “claims to be the biggest in the Southern Hemisphere”)  when we saw a movie. Afterwards strolling through Chaddy I drooled looking at the dresses in the different stores!

Yesterday my “worker” who’s also one of my closest friends went shopping at Fountain Gate, like we usually do most Thursdays. Most Thursdays I have massages as I have severe scoliosis and chronic nerve pain, so massages are extremely important to relieve some pain and tension from my spasming muscles. The massage parlor that I was going to at Fountain Gate has changed management and after last week’s massage I decided to look elsewhere. So my friend and I went to a different parlor. The massuses looked at me oddly and said they couldn’t massage my back in my chair. My friend kindly explained how you can massage my back when I’m sitting in my chair and actually showed them how they can massage do it. They answer was still “no”. After I thought would they turn away a pregnant woman who couldn’t lie on her belly?

Their loss turned into my gain as I found an awesome masseuse in another parlor. She didn’t have a problem with me being in my chair and listened to my friend and I, and most importantly she has eased my pain.

Sadly, this wasn’t my first time where I’ve experienced shop discrimination. Years ago (when I still myself drove in public) a shopkeeper at Waverley Gardens ordered me out of her store. It was like a $2 shop, with stuff EVERYWHERE. I remember there was a big oval  mirror  sitting on the floor and I drove gently past it. The shopkeeper eyed me, then ordered my family and I out of the shop. That was one of the first times I was outraged! I was a careful driver and knew the size of aisles I could get through. But this lady simply didn’t want me in her shop.

Some shopkeepers kindly move racks of clothing or whole shelves so whoever is driving my chair and I can move around the store easier, but unfortunately others simply don’t make their stores wheelchair (and pram friendly), because less space equals less produce.And it’s only getting worse!