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!

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!

Just Because….

Just because I have a severe disability

Doesn’t mean you have to speak loudly and slowly,

I comprehend everything you say.

Just because I have a severe disability

Doesn’t mean I’m unable to communicate with you,

Simply look at my computer screen; you’ll see what I’m saying.

Just because I have a severe disability

Doesn’t mean what I do in my life should be seen as spectacular and extraordinary,

I’m just doing what other people do.

Just because I have a severe disability

Doesn’t mean I should be treated like I’m isolated,

I lead a full life with cherished relationships and wonderful adventures.
Just because I have a severe disability

Doesn’t mean I don’t have the same thoughts, feelings and aspirations as you do,

I think, feel and aspire like you do.

Just because I have a severe disability

Doesn’t mean you can treat me like a child,

I’m an adult who makes her own decisions.

Just because I have a severe disability

Doesn’t mean you should assume anything about me,

My exterior fools most people.