Today, I am absolutely thrilled to bring you another guest post. Gemma Orton, who blogs at Wheelescepades, has a condition called Spinal Muscular Atrophy. I ‘met’ Gemma a couple of years ago on the Chronic Illness Bloggers group. As well as bringing awareness about SMA and accessibility issues, Gemma also writes about her outings, concerts, books, hobbies and so much more. Oh and afternoon teas. She’s quite partial to an afternoon tea. Please take a look at her blog as I’m sure you’ll enjoy it.
Meet Gemma From Wheelescapades
Hi there, I’m Gemma and I live with a genetic condition called Spinal Muscular Atrophy. I was diagnosed at 11 months of age, after having a muscle biopsy due to not reaching the same milestones as many babies. I didn’t sit up or try to crawl, I had a very wobbly head and didn’t gain weight well. In fact, I still have an extremely wobbly head! Spinal Muscular Atrophy is a progressive neuromuscular condition
that causes muscles to atrophy and therefore weaken. I have SMA type 2 which affects my ability to move, breathe and swallow. Fortunately, it doesn’t affect my ability to ramble. Well, unless you mean the walking kind. I’m a full-time power wheelchair user.
Upon starting this post I was thinking about all the things I still manage to do, the brilliant life I live, despite having a disability. And it got me thinking.
I often get people remark things like ‘oh, you draw really well, considering’ or ‘you get up to lots of adventures, considering’. Considering what? As if they’re things I shouldn’t be able to do. Yes, many things take me a lot more time than they might take some people. I often do things in a different way (I mean we don’t all possess the skill to eat crisps with a fork) and I do come across more obstacles than many. But this is all just the norm to me.
“I Enjoy What I Love Because of Spinal Muscular Atrophy”
There was no ‘me’ before there was my disability. There’s no ‘after I became ill’. And because of this, maybe there is no ‘considering’, no ‘despite’. SMA and I are one. I am who I am because of my
disability. We can’t be separated. And I’m totally ok with that. And so I thought, let’s flip things around. Because maybe I do the things I do, have the skills I have, and enjoy what I love, because of Spinal Muscular Atrophy.
Don’t get me wrong, there are times where I ponder what life I would have had without the restrictions and illnesses that come with SMA. It’d be bizarre if I didn’t. We all have those ‘what if’ thoughts. And there are times when progression hits and I totally, completely, hate SMA. And that’s ok.
So here are the things that make me who I am. The things I enjoy and love. The things that keep me sane. Be it despite or because of SMA.
Crafting
I’ve always had a creative mind. I think having to adapt and do things differently in life has made my brain work in that way. Creativity is also something that gives me freedom. It’s a thing I can
own and do myself. Pretty much.
I studied art, craft and textile design through collage, art school and to a Masters Degree. Although career-wise the Masters isn’t being used, those were the best years. Being surrounded by so much creativity and like-minded people. Even though there were obvious restrictions to what I could physically do, I never felt like I was different. We all had our thing creatively, and in that world, anything goes.
My disability has progressed since then, however, I still craft almost every day. It can be exhausting at times, when my wrists hurt and my hands just feel heavy. But it’s worth it for the enjoyment, distraction
and fulfilment.
These days I’m all about the little things, in life, yes, but also in crafting. I mostly stick to the things that can be within a fingers reach. Intricate processes. I enjoy cross stitch and crochet and have recently started painting digitally on my phone as part of #The100DayProject over on Instagram. They’re all techniques I have complete control over myself. That I can physically undertake.
Blogging
It was definitely being disabled that made me a blogger. Although I’ve always enjoyed writing and did go through a phase of wanting to be a journalist as a child, I’m not sure I’d have taken the plunge or had the inspiration and content if it weren’t for SMA. Being a wheelchair user can get you into all kinds of situations. Some so mindlessly frustrating that if you didn’t laugh about it you’d end up crying. My life can be a bit of a monotonous sketch show of getting stuck in ridiculously small lifts, being asked if you can get up just one step (‘just one’ is still a step, in case you wondered), waiting in the rain as a bus drives by because the one wheelchair space is already taken, and clearing out what appears to be a storage room so that I can use what actually is the accessible toilet. (See, I told you I could
ramble!)
Laughing with friends about how one day I should write a book, I decided to start a blog. Because that’s what everyone does. As well as being very cathartic, being able to rant about inequality and ignorance, I wanted to play my little part in raising awareness. Dreaming that one day there really might be access for all. Little did I know when I wrote that first post, blogging would become a huge part of my life and I would be welcomed into what is an amazing (mostly) community of people and now friends.
Dining
Well who doesn’t love eating? If you’ve read my blog at all you’ll see I’m totally obsessed with afternoon tea. I love the dainty tradition of it all. Like a little event. Dining out for me though, is a way of socialising. When you come with wheels it’s difficult to visit friends and family because so many houses are inaccessible. But also, activities are limited. I won’t be going paintballing, swimming or to the gym with friends. Therefore our go to get together is checking out the newest restaurant, themed afternoon tea, or sitting for hours gossiping and people watching in a coffee shop.
Gigging
I love live entertainment. One of the hardest parts of going through this pandemic (other than missing family and friends) is that I haven’t been to a gig, concert or festival since 2019.
Not only is it generally an accessible way for me to socialise (we won’t go into the dramatics of me trying to book accessible tickets, there’s plenty of that on my blog), but it’s a form of release. Escape. There’s nothing quite like sitting in a massive crowd of like-minded peers laughing hard at a relatable comedian or singing along to an overplayed classic by your favourite band. It’s a uniting of people, all with their differences, all unique but really all the same.
I want to say a big thank you to Gemma for writing this post. Please take a look at her blog and her social media pages.
Facebook
Instagram
Twitter
Thank you so much for having me!
I really enjoyed reading your post and I’m sure my readers did too.
It’s awesome to see Gemma featured here and it’s an excellent post 🤘 What really got me in the feelies was the talk around disability being part of you: “SMA and I are one. I am who I am because of my disability. We can’t be separated. And I’m totally ok with that.” – It’s a refreshing, empowering perspective to take. I also like the honesty in how the “what if” thoughts can still hit you and you can still hate SMA sometimes. This is exactly what I think a lot of people with chronic conditions and other disabilities need to read because it’s raw and encouraging and so very relatable. I can’t be doing with toxic positivity, but at the same time I think that finding a place with some degree of acceptance and working with what you’ve got is so important.
For the record, I think you’d make a brilliantly witty journalist and your writing is always incredibly engaging. You could also wipe the floor with the likes of Jeremy Clarkson or Janet Street-Porter and their sarcastic diatribes any day.
Out of curiosity, do you get claustrophobic? Just wondering because of your lift experiences. Lifts have always made me feel itchy and a bit panicked, so I don’t think it would be very comfortable for you in your wheels while stuck inside a small moving box. My unease is probably just because I watched too many horror films of lifts getting stuck and killers rappelling down from above when I was a kid. xx
Well no, I didn’t have scary thoughts or claustrophobic feelings about lifts….. until you mentioned horror movies and murders! 😂
Nah I’m not really scared of much in that way. I think we’ll I ain’t gonna get far if I don’t use a lift, so don’t really think about it. I have been stuck once though, oh twice actually, both times in those awful see through ones where you have to hold down the button all the way. One time was in a cinema and I did get free tickets. So there is that!
I hate all that toxic positivity too. I don’t really class myself as positive, more a realist. It’s who I am, there’s nothing I can do about it. SMA has definitely made my life what it is, the goods and the bads included.
Thanks for the compliment about my writing, aww you’re too kind! I like to write how I chat. I like to read things that are like that too, I always feel I can relate more. Even if it does mean I ramble an awful lot!
What a brilliant post. Thank you for providing a space for others to share their story and raise awareness about their condition. Spinal Muscular Atrophy is a condition I didn’t know much about so it was great to educate myself on it and learn the impact it can have. I love Gemma’s perspective on everything. Chronic illness has completely shaped me too and as tough as this journey can be, there are positives and it makes you appreciate things so much more. I completely agree with her, nothing beats afternoon tea or trying out the latest restaurant! Thanks again for another great post.