Category: Experiences

Judging and Misconceptions

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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

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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

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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!

Will

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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

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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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They Joys Of Shopping

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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!

Inclusion Not Exclusion

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Regularly a group of family, friends and I love days like these; good music, good company and good food!

Two Sundays ago, January 22nd, 2017 Mum, Aunty and our close friends were excited to go to the Red Hot Summer Concert at Mornington Racecourse. This was our second gig there with the same promoters. Two years ago we went and immediately were shocked with how they had penned people in wheelchairs into a corner with fences around the small area; totally segregating them and their family and friends from the rest of the concert goers.  This year the promoters had organised a nice shaded tree for people in wheelchairs, but the problem was they were only allowing ONE companion into this nice shaded section under a large willow tree.

So my Aunty and friends went on the hunt for an area which would fit six of us including myself with our chairs and table. After Mum and one very pissed off Aunty exchanged some words with security guards, we ended up setting up camp outside the Men’s Toilets. Lovely!

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We absolutely love going to Day On The Green concerts! They have an area for people in wheelchairs where their family and friends (no matter the amount of people who had come with them) right behind the reserved area! Perfect position! I can see the actual stage and the big screens!

Unlike at Mornington Racecourse!

Two years ago Mum made it perfectly clear to the promoters at Mornington Racecourse we wouldn’t be carolled in the pen; segregated like sheep. We had hoped the promoters had took on our suggestions, but obviously they still have the mentality that people with disabilities don’t have meaningful relationships and would want to go to concerts like these with their friends.

Even though we enjoyed seeing great Aussie legends including John Farnham (I had flashbacks to when I was 10 singing along to Whispering Jack), life was made harder than it already is because we didn’t have adequate shade, we couldn’t see the large screen (when John Farnham was on some of my friends and I went right in front of the screen behind us – then we had a front row view!) and we sat was right beside the MALE TOILETS! What the!!

My family, friends and I hope by writing this post, the promoters will take notice of our suggestions and recognize the need to change their disabled seating arrangements and allow people in wheelchairs to sit with their group of family and friends and not be carolled in the corner somewhere…excluded!