Storytime | Life Lessons ♿

Years ago, during a university art class, a fellow student sat idly, pissing and moaning about how awful and unfair his life was. (He wasn’t literally pissing, by the way. That would be odd!).

There, in my powered wheelchair, with teeth clenched, I chose to remain quiet while he complained about his superficial, so-called ‘problems’.

As I recall, he’d depleted the bank of mum and dad on nights out and booze, meaning he couldn’t afford to go clubbing again that week.

Oh dear, what an awful shame!

A lad opposite, who I didn’t know well, kept looking at me with a shared expression of annoyance – I remember it vividly. He finally interrupted,you know what mate, we’ve all got problems! Maybe look around sometime.

I couldn’t help but smile and offer a nod of respect.

I was 20 at the time. Now 33, my tolerance for ignorance and entitlement has dissipated with age.

Truth is, everyone, at some point in life, will encounter problems, challenges and setbacks. Indeed, we all feel stressed and depressed from time to time – these feelings are completely valid.

Of course, feeling depressed is NOT the same as suffering from depression itself. (That’s a whole other topic, which I won’t go into here).

I’m sure we’ve all been told, others have it worse off. While I find this phrase unhelpful and somewhat dismissive, I must concede, it is often true (sorry, not sorry!).

Not to undermine anyone’s struggles or experiences, I do think it’s fair to say that the problems of some people are far greater than those of others – to gain a little perspective, all you need to do is switch on the news!

Admittedly, over the years, I’ve allowed myself to indulge in moments of self-pity (not an attractive trait). The dark pit of despair is easy to fall into, and difficult to climb out of.

That said, I’ve never sulked or felt sorry for myself over what I consider petty complaints, such as missing out on a social gathering or event. Honestly, I’ve no time or patience for that sort of nonsense. Again, it’s about perspective.

For context, I live with a very rare, progressive, muscle-wasting condition (Ullrich congenital muscular dystrophy). Unable to weight-bear, I use a powered wheelchair and rely on carers to assist with physical activities. In addition, associated health issues affect everyday life.

On my darkest days, I would ask – Why me? What have I done to deserve this crap?

Funnily enough, no higher power ever answered. Which later lead me to ask – Why not me? What makes me so special?

Shit happens! And yes, some of us face more than our fair share of it. But like it or not, we must learn to accept, adapt and deal with it – limitation, loss, grief, disability, pain, trauma, illness…

What’s the alternative? Hide under the duvet covers and wallow? Trust me, that sort of self-destructive behaviour can only create further problems.

If I’ve learnt anything, it’s that life isn’t fair.

I continue to battle with frustration due to my health, physical limitations and circumstances over which I have no control. So, I now try my best to practice gratitude and remind myself of all the good things I am blessed with. I don’t always succeed, but I try.

I also find it hugely beneficial to avoid self-indulgent doombrains like the aforementioned art student!

Ouch! | Growing Up with Muscular Dystrophy

Much of my early childhood was spent collapsing on the floor, unable to get myself up.

Such fun, such fun!

Born with a rare form of congenital muscular dystrophy, I could only ever walk short distances, awkwardly, with the aid of custom-made leg splints.

Photo of me, aged 4, stood in primary school uniform and wearing leg splints
Photo of me (right), aged 8, with a primary school friend (left)

I was never able to climb stairs or tackle curbs. I tried, many times…and failed.

I would manage to stumble a few steps then drop in a heap.

At 33, my bony knees remain scarred from recurrent injuries. Small marks on my forehead serve as a reminder of falling forward onto the patio as a kid – That one hurt!!

At around the age of 9, I tumbled from a horse after it bolted unexpectedly. The result was a battered and bruised bum, as well as a lost riding boot!

Still, I got back on the horse – (well, I was lifted) – knowing I had no other option, since I couldn’t raise myself from that muddy puddle and walk away.

Photo of me, aged 9, riding a horse

In 1998, aged 10, I became completely non-ambulant and dependent on my manual wheelchair.

Photo of me, at primary school, sat in my manual wheelchair

Though it was some relief to no longer struggle desperately to stay on my feet, I then found myself thrown from my wheelchair on numerous occasions – whether due to misjudged terrain, being pushed too fast around the school grounds, the absence of belt straps and anti-tippers (I know, I know), or simple recklessness.

Oh well, you live and learn!

Now, I’m teeny tiny in stature and so, I’ve always been manually lifted and quite literally chucked around. This, inevitably, lead to further falls – or rather, being dropped on the floor and bashed against furniture.

Most of the time, I managed to laugh it off – shit happens! Other times, it was pretty damn painful.

Some years ago, a routine chest X-ray revealed a fractured lower rib.

The radiographer approached me to ask if I knew about the fracture. I told him I did, (how could I forget?). He then asked if I attended A&E following the accident – “No, what’s the point? Nothing can be done for a fractured rib”.

Though visibly surprised, he shrugged and agreed.

There are many more incidents I could recall, such as ramming my powered wheelchair – and my knees – into the bathroom sink, (unintentionally, of course!).

My bloody knee, after I accidentally rammed my powered wheelchair into the bathroom sink!

My point is, in life, we fall, we get hurt, we break. We can either wallow in self pity, or take the knocks on the chin, (sometimes literally), and choose to get over it.

Saying that, I could do without anymore ouch moments!

“Falling down is how we grow. Staying down is how we die.” ~ Brian Vaszily