testing

The Year That Was 2020

Really… What can I say about 2020? Besides a global pandemic, it seems 2020 hasn’t gone to plan for lots of people. So let me right now say “Fuck off 2020 and don’t let the door’s slapping you on your arse stop you from leaving us!”

In a positive light, I think 2020 has forced a lot of people to revaluate their lifestyles and their work/life balance. It has for me. Until September I was pretty sick but hid it well to those people who didn’t (and still don’t) realise what was going on… Hell, I was living it and kept telling myself “it’s not THAT bad” as I spent countless days staring outside our sliding door, trying to breathe through nausea from migraines. But I got through it, and even though my life decisions have changed about working, writing and even using my portable eyegaze system to avoid bad headaches… It’s not THAT bad! It’s about adjusting and realising you’re not young anymore! 😛

I’ve noticed how peoples’ opinions on “Rona” are very different. I watched a confronting Greys Anatomy episode a couple of weeks ago which prompted Mum and me to have a conversation about my wishes. (Boy, they’re showing the effects of the pandemic worts and all) I wish people who think people are being “over-cautious” could watch that particular episode because if people understood the consequences of the vulnerable getting this virus, they just might think twice suggesting “getting back out there!” Yes, we’re lucky to live in Australia, but all it takes is ONE person to spark an outbreak. Look at NSW! I’ve only been out about six or seven times since March, once in our local small shopping centre, and that freaked me (and Mum) out because some people weren’t wearing masks or trying to be socially distant! That was in November!

I really, really, really hope 2021 is a better year for everyone! I hope you stay well and safe! And I hope you’ve had some good moments you can look back on.

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!)