Today marks five years since I published my first blog post. It feels like only yesterday, and also feels like I’ve never not blogged. What did I do with my time before? What did I procrastinate from? Because as much as I do enjoy writing, I’m even better at finding other things to do while I think about writing.
August is SMA Awareness Month. There’s been talk in the community about calling it SMA Pride Month. There’s Disability Pride in July. Which is great for coming together and celebrating humans and all they do. I’m proud of the person I am, but am I proud of SMA? Well I still struggle a little with that.
It’s purely a coincidence that I started blogging during SMA Awareness Month, to be honest I hadn’t realised myself until just a few weeks ago. SMA is likely the reason I blog, though. Although who knows, I may have rambled about actual rambling.
A couple of years ago for SMA Awareness Month I answered a load of questions relating to me, SMA, cake and Superman. Yes, Superman. Go check it out in my post Me, Myself and SMA.
One of the questions was ‘What has SMA taught you’. Answering that, thinking of SMA Pride and looking for the positives in life, to raise awareness this year I have come up with a list containing things SMA has given me (other than pneumonia, creaky joints and low muscle mass!).
An appreciation for the smaller things
This sounds like I’m saying that being disabled equates to having a dull, small life. I don’t mean this at all. I’ve had some epic adventures, and have a life that I enjoy.
What I do mean, though, is that when you’ve seen what the brink of life looks like, you can gain an appreciation of the things you maybe didn’t even consider before.
I enjoy the chores of life, the mundaneness of it. The process of living. A bright and sunny day, the perfect cup of tea, finding the ideal shade of orange wool, that I’ve actually kept a plant alive for more than six months. The little things are key.
It’s not wrong to set your hopes and aims high, but small goals mean something too.
I’ve also found myself drawn to tiny things. Having limited movement means my physical world needs to be quite close. Giant feels weirdly out of reach for me (I’m sure a psychologist would have something to say about that). I like tiny books and little trinkets. Things where I can feel the whole.
The crafts I do are of a small scale, so that I can physically undertake the task myself.
I’m all about the details in life.
A sense of humour
I’m often told that I am quick witted (ha! I guess I’ve got to be quick at something) and have a dry and sarcastic sense of humour. I feel some of this has come from the situations I find myself in and have had to deal with. Laughter is the best medicine, but humour is also a great coping mechanism.
Visual memory and awareness
It’s automatic for me to take in my surroundings. I do it more than I realise.
When you’re at a different height to most people you can often feel a little invisible. It’s like I have to be constantly alert as to not have somebody tripping over me, or pushing stuff into me (I know it’s their problem not mine, but I tend to be the one that comes off worst). The world is generally not made for wheelchair users, pathways and shop isles filled with junk, pavements suddenly getting narrower, potholes scattered around and dropped curbs hard to find. I am constantly aware of what’s going on around me, planning my next move and subconsciously risk assessing everything as I approach.
This has enabled me to become observant and excellent at skim looking. If something has changed, something needs finding, or you need to know where the loos were, then mine are the eyes you need.
Creativity and problem solving
Having SMA has encouraged me to be creative in life. Thinking outside the box and being adaptable has been crucial as my condition progresses. Learning to adapt to each stage by changing the way I lift a cup, drive my wheelchair, use my phone, and enjoy my hobbies.
I believe my interests could even be influenced by my disability and ability. As a child I couldn’t move around, so was always creative with how to do things, but also arty as in a way of expression.
I used to get called big ears when I was younger. Not because my ears are particularly big. Well I don’t think they are. Are they? I need to check now. I’ve got a complex. But because I could hear and know what was going on in another room. Don’t whisper around me.
I can’t quickly move closer to something in another room, or turn my head to get a better look. As a child, where you put me was where I stayed. So I developed my own way to take in what was going on and feel more involved. A bit like how a cat turns it’s ears, I can tune in on something that’s not within my reach or sight.
I also think I’m pretty intuitive and have a great gut feeling about things. Whether it’s the vibe coming from another person, their movements or behaviour. I’m quite suspicious in general, but have learned I’m generally right to go with my gut. This is probably linked to the subconsciously observant thing I mentioned earlier.
An ability to plan
As well as often having to think outside or around the box, having a disability can allow for a forward thinking. I have to plan almost everything in my life, sometimes down to what time I go to bed or when I wash my hair. Because of this I have always liked (needed) to know what I’m doing when.
Being spontaneous is a rarity for me, because so much of life isn’t accessible, and I have to rely on other people. It’s not so easy to just catch a train or a bus, I can’t just call in at a friends house for a brew if I’m in the area. To have a productive routine and social life I have learned to plan ahead, schedule things in so that they get done. Arrange dates with friends when we are all free and I have the facilities to get there.
Having turned up to inaccessible venues many times in the past, or gotten to an restaurant to realise that we’ve been seated upstairs and the lift is either out of order or non existent, I’ve taken the diy approach. If you want a job done, do it yourself. Although friends and family have the best of intentions and request wheelchair access, I always like to book things myself or double check with the venue how accessible it is. The responsibility is then on me.
For example, a couple of weeks ago I thought about going to a park with the nieces. I’d heard the park had been recently updated with a little cafe and decking area by the pond. I pictured myself with an iced latte listening to some quacking ducks. Something in me just thought ‘I wonder if they’ve made the decking wheelchair accessible?’, so I emailed them. They hadn’t. I didn’t go to that park, and they’ve assured me they have been ‘thinking’ about wheelchair access and will sort something soon.
Lesson of the day – even plan and enquire about trips to a park.
Patience (not of a saint)
Not being able to do things for and by myself can be extremely frustrating at times. Much of my life relies on other people to be punctual, well, understanding, reliable, knowledgeable and on the same wave length as me.
When you have to explain to people exactly how you want something done, how to style your hair, make your drink, move your arm. You learn to let go of the things that aren’t important and persist with the things that are.
It’s not always possible to have something done when I want it and exactly how I want it done. Not like it would be if you just got up and did it yourself.
Just getting into bed at night when you’re exhausted can be an event, the whole process of directing someone assisting, and the extras I have to do like setting up feeding and breathing machines. There’s never just a jump into bed night. You learn to just accept this as another part of the day, there’s nothing to gain from getting frustrated with it.
Patience is key to a minimal stress life.
Well that may have turned out a little bit like a rant, but I assure you there are positives in there!
BONUS CONTENT: I’ve just written a guest post over at Undercover Superhero, titled ‘The Reality of Spinal Muscular Atrophy’. So if you want to know a bit more about what it’s like to live with SMA, then head on over. It’s part of a series with other great people raising awareness of their disabilities and health conditions.
You can also check out my 11 Perks Of Being A Wheelchair User.