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!)