One of the most difficult things to do in life is to ask for help. A lot of us seem to have this deep-rooted shame in having to reach out and ask for support for whatever it is we are struggling with, but sometimes you have to swallow your pride and simply ask. And that’s exactly what I’m doing today.
As you may or may not know, I am a disabled activist with a rare genetic connective tissue disorder called Marfan Syndrome. It affects everything from my heart to my skeleton, and in the past four years alone I’ve had several major spinal surgeries and a hip replacement (no, I’m not 80. I was 18 when I had my hip replaced). But despite all of these major surgeries, it’s chronic pain that has affected me the most.
There is a large cyst making itself at home at the bottom of my spine; eroding away bone and leaving me in constant pain. This means that to get around, I use a powerchair. Although I can walk a few painful steps on crutches, that’s not a practical way to get around. Instead, I’m been using wheels for a couple of years now.
Unfortunately, my powerchair–the very thing that should be giving me so much independence–has become unsuitable. More than that, it’s now causing me more harm than good. It’s a very basic powerchair (in fact, I describe it as a car seat on wheels) and while it’s done its job for a year now (without it I would be housebound), it’s no longer suitable. It’s so basic, and so unsuitable, that I’m becoming housebound once more, at the grand old age of 20.
Luckily, there is something I can do about this. I can get a new, specialised powerchair that will fit me like a glove and give me back my life.
That is, if I can raise over £11,000.
“I’ve been forced to fundraise for my own powerchair; for my own independence.”
See, the NHS wheelchair services system is broken. I’ve been denied help from them not only because I can walk a few painful steps inside my home, but also because they don’t supply powerchairs as specialised as the one I need. So, like many others in the UK, I’ve been forced to fundraise for my own powerchair; for my own independence.
Powerchairs aren’t cheap to begin with, but because I require a chair with many electrical functions, mine is particularly expensive, coming in at just over £11,000. The pain in my back is is significantly worse whenever I’m sat upright, and often after just 30 minutes of sitting up in my current powerchair I’m left in unbearable pain–which makes the three hour train journeys to London from my hospital appointments particularly excruciating. This new powerchair will have electric tilt and recline functions, as well as elevating legs, to help me relieve some of the pain. I also need specialised seating, changes made to accommodate my long legs, a head rest, and various other features to improve my independence. These all build up to make an expensive bill.
I’m not able to work due to my condition and I don’t have any savings either due to my disability worsening at quite a young age, so I’m left with only two options: fundraising or becoming housebound. Without a new powerchair, I’ll struggle to attend vital hospital appointments, I won’t be able to visit my family who live three hours away, I’ll have to stop my charity work, and I will generally be cut off from society.
So this is me swallowing my pride and asking for help; asking for donations; and asking for you to share my story.
You can donate to Shona’s powerchair fund via GoFundMe, and share her story on Twitter to help her get the independence she deserves.