Me, Myself and SMA

August is SMA awareness month. I’m pretty aware all year round, but I invited you guys to put to me some questions.

I talk a lot about access and wheeling around. But I don’t talk a lot about my actual condition. There is so much more to SMA than having wheels. In fact having wheels is probably the easy part.

SMA is Spinal Muscular Atrophy, not just a milk formula to feed babies.

I’m not going to bore you with the facts. There’s plenty of that on the World Wide Web if you want the sciencey stuff. To be honest I’m not all that much in the know myself about the biology of SMA. Good or bad thing, I don’t know. But I’m here to tell you what SMA is to me. What it’s like as a companion, to live with. I have SMA Type2.

‘Spinal Muscular Atrophy (SMA) is a rare, genetically inherited neuromuscular condition. It causes progressive muscle weakness and loss of movement due to muscle wasting (atrophy). This may affect crawling and walking ability, arm, hand, head and neck movement, breathing and swallowing. There are different forms of SMA and a wide spectrum of how severely children, young people and adults are affected.’

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Here are my (sort of) answers.

The most sensible and least sensible thing that someone has said during a conversation about SMA?

This is a hard one.

I don’t know if this answers the question but very little is still known about SMA by people unrelated to the condition. Very few people I come across have heard of SMA even though 1 in 40 people carry the gene, resulting in approximately 1 in every 10,000 babies worldwide being born with a form of the condition. I have had hospital discharge letters that state I have Spina Bifida, and often health professionals mix up my SMA by assuming I have MS or MND. These are a lot of capital letters and abbreviations, and although they come with similarities the conditions have different symptoms, treatments and prognosis. It is important that awareness is given to Spinal Muscular Atrophy and that health professionals have some brief knowledge. So in vague answer to the least sensible things said, is healthcare professionals not having a clue what SMA is and confusing it with similar yet very different conditions.

The most sensible conversations have been with fellow SMAers. There’s nothing like having that ‘oh me too’ moment with someone that totally understands what you’re on about when you explain how you balance one hand against another to clean your teeth or lift a fork. Or when saying how you need to sit 2 millimetres to the left to be able to balance.

There’s also a great breadth of knowledge out there within the SMA community, and that’s where platforms like Facebook and Twitter really show their worth. Ask an SMA question about wheelchairs, ventilation, weird health changes, adaptive technology, the easiest smartphone to use, and you’ll get the most sensible and quirky tips, tricks and suggestions from fellow SMAers.

Not that doctors and other professionals shouldn’t be consulted too.

What is the best thing about having SMA?

The people I think.

Whether I would have chosen it or not, SMA is a part of me, just as much as my blue eyes and love of tea. It’s in me. It is me. There is no question that without SMA my life would have been very different. I don’t mean this in a bad way, as much as I may sometimes wonder, we will never know the type of person I would have become without SMA.

It’s unlikely I would have had the same circle of friends, many of whom I’ve met because of my SMA. I’d have gone to a different school, in a different town. I may never have gained an interest in the arts, or got my Masters Degree. Who knows. Maybe I’d have blogged about make up or mountain climbing. Ha.

So the people I’ve met along the way have to be one of the best things.

Along with some of these Perks Of Being A Wheelchair User.

Many would assume the best things are not having to do stuff. Make the bed, cook the dinner, weed the garden. You do not realise how much I would love to wash the dishes. Just once. I’m sure I’d bore of it quickly.

What’s your favourite cake?

All the cake. But preferably lemon drizzle, with lots of drizzle.

What has SMA taught you?

Patience has to be one of the biggest things. When you can’t just do something you want when you want, you learn to wait. It can be frustrating at times when somebody doesn’t understand what you’re trying to explain. Like I need my arm or leg in a certain position, or I want something done just so. You learn to explain and explain again. Or if it’s not that important you learn to let go or go with the flow.

You learn to be articulate, well I’m still working on that one.

I’ve been told more than once that I’m super observant and have excellent hearing. I guess when parts of you don’t work well, other senses and characteristics try to compensate. I’m brilliant at browsing and choosing in a supermarket or store. I can’t move well, but within seconds my eyes have scanned everything in an isle and directed you to the item required. Fourth shelf up, about halfway along, roughly the height of your elbow. That’s where the lemon cake is.

What’s the most commonly asked question you get about your disability from people without one?

One I get a lot of the time is ‘can you feel your legs?’. Yes, I can.

This is an understandable question when you consider that another common question is ‘what happened to you?’. Nothing.

People often assume something must have happened to mean that I cannot walk. Because being in a wheelchair is assumed to always be about the legs. My legs are rubbish, but SMA is much more than legs. I’d rather my lungs improved than my legs, they’re a bit more crucial.

Closely followed by ‘what’s wrong?’. Nothing thanks, I’m fine. How are you?

Awareness and education is half the reason I blog though, and I would much rather someone asked a question, however ridiculous, than stare, assume or are ignorant. So please, ask people stuff.

You can use your normal voice though, no need to shout or speak very slowly.

What’s the most difficult obstacle you face when you’re out and about?

Access, access, access. Steps, narrow doors, and store cupboard toilets are inaccessible, but so are many other things, the things abled people wouldn’t even consider.

Limited seating at shows and cinemas. No choice of where to sit. Being unable to sit with friends and family. This is all inadequate access that just shouldn’t be a thing.

There are also things I like to call inconvenient access issues. Low tables, high tables, chunky tables, shingle, having to go in the back door, using the ‘goods’ entrance or lift. Basic equality.

Oh and people assuming I can’t speak for myself.

What is the biggest misconception (by non wheelchair users) about being a wheelchair user?

That it’s all about the wheels. That I know every wheelchair using human. That being unable to walk is the worst thing. That just by being alive I am inspirational. I’m not. I do what do, what I can do, I haven’t saved a life, I haven’t created a genius invention. I am not here to be inspiring. I live, what’s the alternative?!

Oh and again people assuming I can’t speak for myself.

What is your greatest fashion challenge?

This is a great question and something I don’t think many non wheelchair users would think is much of a challenge.

For starters we don’t see many models sitting down, mannequins in shops are rarely seated and online shopping images aren’t full of wheelchair users. Clothes look totally different on a person seated. The cut, the drape, the twirl. Nothing alike.

Have you ever seen a hoist in a store changing room? Me neither. Which means I can’t try on jeans, trousers, much really. We all know how hard it is to find the perfect jean. Add to that, never standing, putting them on laying down, not being able to try a load on before you buy.

You know when you sit down trousers ride up and swing around your ankles? Try always sitting down. I need a size ‘long’ in everything. Oh and skinny jeans when you have funny shaped legs and a catheter bag… don’t even get me started!

Helping me dress is close to dressing a human size doll, only my joints don’t move well and I’m a bit floppy. I have to buy most clothes a size too big for easy dressing. My shoulders don’t move well and I can’t lift my arms, so getting a cotton shirt on with no stretch looks a bit like Houdini struggling to get out of a straight jacket.

All those pretty back details… wasted on me.

There’s also such thing as an SMA tummy. It’s not just cake.

Most irritating myth?

That SMA is the end of the word.

Why does superman have his pants on over his trousers?!

I’ve got two theories here. It’s possible that he has two pairs of pants on, one usual pair under his clothes and then a spare over the top. Because let’s face it he gets in some tricky situations that might call for a pants change. Plus he can’t exactly carry around a rucksack of spares.

Or… during a quick transformation from Clark Kent one day he got in a pickle, the pants ended up on the outside and he just thought ‘this could be my thing, I’ll start a trend, be known as the guy with his pants on the outside.’ The rest is history.

Without using Wheelescapes, if someone wrote a biography about you, what do you think the title should be?

All my creative thoughts were used up on Wheelescapades. And I still don’t know if I like that. Also, I don’t think I want someone to write a book about me. Not till I’m gone anyway.

Actually, it would probably end up being called Wheel Escapades. Which is what most people refer to my blog as when they write about me or quote me. It frustrates me a lot. Don’t they realise how long it took me to combine those words?!

What’s something you’ve tried (craft or food) that you’ll never try again?

I often choose foods based on eatability. By this I mean I don’t always eat the food I like the most, but the food I can manage to eat easiest. I eat everything with a fork. I mean everything. Also my jaw opening is restricted and my chewing muscles weak. A bit like you should never order spaghetti bolognese on a first date. I weigh up the pros and cons of most meals. How strong am I feeling today? Do I have the energy for a pizza or sandwich? Is it an easy scoop it up risotto kinda day? Will I just burn more energy crunching that biscuit than pleasure I’ll gain eating it?

I’m writing a post about crafts soon. So you’ll have to wait for that.

Favourite brand of tea?

You’d think being a tea addict would make me a tea snob, but I’m not really. I’m happy with most of your regular brands, with Yorkshire Gold being one of my faves. I’m currently using Lidl decaffeinated for my day to day drinkage. I like a loose leaf when out or if I see something to try for a change, but we can’t have the nice stuff everyday or it wouldn’t be so nice. Also with the amount I drink I’d need some kind of sponsor. That’s an idea…

If you could eat anywhere in the world where would you go?

Well this is a difficult one. I want to go to Italy, Florence. I think we all know that, I’ve been going on about it for at least 20 years. As much as pizza, pasta and gelato are pretty tasty, food isn’t why I want to go. If my tastebuds got to decide then it would be India. I want to go along a street food market taking a bite from every stall. Now I quite fancy a trip to India too, the colours, the spices, the culture. I don’t think I’ll have to toss the Italy/India coin just yet though. Until planes have wheelchair access. Then I’ll go to both, on one big trip around the world.

What’s the worst part of always having to have a PA with you?

Feeling as if you should justify your doings is something I struggle with. I know I shouldn’t have to, and there’s no reason to. But I do.

This isn’t anything against PA’s as such but just never being alone is weird. There’s always someone within shouting distance. I can’t just go for a wander. Well I can, but my hand might slip and then I’m there in the middle of a road with oncoming traffic.

Unnecessarily feeling as though I should host.

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I’m still open for questioning, just comment below, send a message or get in touch via social media.

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Also check out my post 7 Things SMA Has Given Me.