Friday 9 December 2022

Turning 40...

A Millennial Milestone

November, 2022

The unthinkable happened

I turned 40.

After counting down from months, to weeks, to days, it finally arrived. I'm not really sure what dramatic and irreparable change I expected to occur on the morning in question; perhaps a sudden, drastic aging, akin to Tim Allen in The Santa Clause?! The truth was far less slapstick, because I largely looked and felt exactly the same as I had done the previous days, weeks and months. (Apologies to anyone coming into this expecting a heart-warming Christmas tale involving personal growth, slapstick comedy and Santacide!)

 

It's just the whole mental stigma of it, you know.

40...

F-o-r-t-y...

Four zero...

The age that society has deemed to be the midpoint in one's life. Honestly, I really thought I'd have figured things out by now. But time is sneaky like that. The first 20 years of your life go by so slowly that it feels like you've got forever to get all the jigsaw pieces in place. Then suddenly, at some point in your early 20s, the fast forward button gets hit and next thing you know you're filling out an online form and having to scroll down two or three times to find your year of birth!

 
 

Aging Out of Independence?

Forty was the first milestone birthday I remember one of my parents reaching. A then 10-year-old me designed a handmade card for my mum; depicting her as a silver-haired dear, shuffling across a zebra crossing, walking stick in hand, as the crossing guard held up a lollypop stick with a big, fat "40" painted on it. And now it's my turn. Rather than hobbling along with a walking stick however, I'm rolling my way across the road in a wheelchair. God help 10 or even 40-year-old me try to draw that, I couldn't even master hands!

Limited artistic ability aside, the disability aspect in all of this cannot be ignored. I've spoken at length in previous entries about how I fought for independence after my injury, how my injury level puts me right on the border of dependence/independence, and how various wearings and tearings have heightened my long-term injury fears going forward. So when you couple almost two decades of spinal injury with the unavoidable truth that even the most able of bodies will start to deteriorate with age, and I can't help but feel that doomsday clock ticking ever louder... 

"Here lies Gareth, he died as he lived, in a bewildered heap!"

Thanks to constantly evolving technology and disability aids, I don't think I'll ever reach the point where I'm wholly reliant on others. My worry is that, like so many of us, I am reliant on my arms for every single thing I do, every single moment I'm awake. I need both of them to be in full working order, or at least my own quad equivalent of it, for me to even be able to get out of bed on a morning (see my previous entry). 

I may have hit 40, but I certainly don't feel "middle aged", whatever that's supposed to entail. I still have the same drive and desire for adventure as I did two decades ago. However, I am becoming increasingly aware that all it would take is some minor deterioration in either arm for the domino effect to start, and that does scare me as I get older.

Of course, there's nothing written in stone saying this is imminently, or even ever, going to happen to me. I have a fairly healthy, balanced diet, I play sport regularly and try to get some form of exercise in at least 5 times a week, and I've managed to maintain myself at a liftable weight; all of which work in my favour here. It's almost entirely conjecture on my part based around a number. There's also nothing saying you have to have every aspect of your life in order at this or any point in your timeline. There's nothing inherently wrong with floating through the years on a cloud of, what feels like, confused yet carefree abandonment. Hell, you could even look at this as being positively appealing!

Nothing suggests an impending midlife crisis quite like a backwards hat!
  
I may not be exactly where I envisioned myself at 40; a couple of elements in particular are conspicuously absent, but I certainly don't view the life I've carved out in a negative light. I have a house, a car, two jobs and a social life that includes at least one yearly adventure abroad, so I'm by no means completely adrift without an anchor. And in a world where an increasing percentage of the population struggle to have any of these things, I am extremely grateful for all that I do have. I just still don't really feel like I know what I'm doing. But maybe that's how we all feel. Maybe, behind the public facade, everyone is as secretly bewildered as I am (don't correct me if I'm wrong here, I need this!).
 

Keep On Rollin'

 
Anyway, these have been my general, untethered thoughts as a quadriplegic wheelchair user turning 40. I hope this hasn't come across as overly self-pitying or self-indulgent on my part, I had absolutely nothing mapped out when I started writing. It's really been more a therapeutic stream of consciousness than anything; so thanks for listening!

In the meantime, I'll continue meandering down whatever hazy trail I'm on, crossing bridges as they come. Maybe this is the decade where all the pieces fall into place and the picture becomes clear. I doubt it but stranger things have happened! Until then, I'll take solace in the words of the great philosopher Baz Luhrmann:

"Don't feel guilty if you don't know what you want to do with your life.
The most interesting people I know didn't know at 22
What they wanted to do with their lives.
Some of the most interesting 40-year-olds I know still don't."

Thanks Baz. As someone who had their injury at 22 and firmly buys into the notion that you can remain feeling the age at which you were injured, this fits uncannily well. I could really have done with a couple of lines about growing your hair and beard out so as not to look like a white nationalist though. Had to work that one out for myself!


G

Monday 24 January 2022

An Impending Impediment To Independence

New Year, New Injury, New Questions

As we all enter a brand new year, my 17th on wheels, I wanted to pose a question to my fellow "person's of varying disabilities", something that's been on my mind more and more recently: 

How have you dealt, or how do you plan to deal, with an eventual loss of independence?

I ask this because a couple of months ago I woke up one morning and found myself unable to transfer out of bed and into my chair. Every time I went to push through my arms and lift, shooting pains went all down my left arm. I spent a good 20 minutes trying to push through the pain, do smaller lifts and shuffle my way into my chair, but the ability just wasn't there; my arm had completely gone. I'm generally a fairly rational person on the whole and someone who doesn't panic easily; however, in that moment, I will fully admit to feeling more than a little concerned.

I phoned my mum who lives nearby and asked her if she could come round and fetch my slide board from downstairs, a relic from my time in the James Cook Spinal Injuries Unit, stashed away in case of emergencies, and this certainly felt like one. As I waited for her, questions bounced around frantically in my head: 

"What the hell had happened?"

"What if this was permanent??"

"How many changes would need to be made to my life?!"

In hindsight, I can see that my initial fear and confusion had led to me playing out every worse case scenario in my head, but I think it also exposed a truth; that one of my biggest fears is losing the independence that I have. 

Good old banana board, practical AND stylish!

The Edge of Independence

Initially, after my injury, I really couldn't do much of anything for myself. My arms were incredibly weak, my fingers didn't work and I hadn't even begun to grasp how to adapt to my new circumstances. By the time I left hospital I could just about manage the basics of washing myself, feeding myself and dressing my top half; everything else was achieved entirely by, or at the very least with a large amount of assistance from, nurses, carers and parents. 

When I eventually got a fully accessible place of my own, it took me months of trial and error to work out methods of transferring, washing and dressing myself independently; and even longer when it came to the likes of bowels and baths. I moved from a flat to a house in 2017 and have since worked out a method of doing a floor to chair transfer that involves me lifting myself up a couple of stairs in the hallway and then across and back into my chair. Even 17 years after my injury, I'm still on the learning curve.

This fierce desire for independence, combined with a stubborn refusal to ask for help unless absolutely necessary, means that I'm able to live my life on my own terms for the most part and am not beholden to others. The increasing number of disability aids available also takes away much of the day to day stress and hassle of having to do things with limited arm and finger function. However, in terms of spinal injuries, mine is sat right on the cusp of independence and all it would take is one little negative shift for me to find myself on the opposite side of that line. 

So with mum having come to the rescue and me having edged my way across the slide board and into my chair, my next frantic phone call was to the spinal injuries liaison nurse who got me an outpatients appointment the very next day. I explained my symptoms to the consultant and was sent for a shoulder X-ray which came back clear. Next step was an ultrasound scan, but that wouldn't be until early in the new year, so I was told to go home, rest the shoulder and arm as much as possible (not the easiest thing to do as a wheelchair user!), and keep an eye on it. 

So "rest" and monitor it I did, and gradually over the next month the pain began to ease, so much so in fact that by the time the ultrasound appointment came about I wasn't sure they would even find anything. 

But they did.

Well That's Torn It!

It turns out I had torn one of the three tendons in my shoulder (the top one to be precise) and that my deltoid muscle was now compensating for it, which explained both the arrival of the extreme pain and the gradual dissipation of it. I was told to await a further appointment with the consultant, but that generally speaking they preferred not to operate on an injury like this, rather they would leave the tendon torn and allow the deltoid to continue compensating for it. When I asked if this was a common injury, the reply came, "not in someone so young". The long-term legacy of spinal injury strikes again!

What I'm assuming the inside of my shoulder looks like right now...


I have no real idea of what the positive or negative aspects of this stance are, and whether the underlying reasoning is medical or financial, but it has certainly left me with a whole new set of unanswered questions bouncing around my head:

"Are there any long-term implications of this?"

"If necessary, would it be possible to repair the tendon at a future date?"

"What if another tendon tears, does the deltoid just compensate further? This cannot be healthy for it surely?"

This all comes less than 7 years after a scan on a rotator cuff injury to the same shoulder found that I had worn away the entire protective layer (I think it was cartilage but don't quote me on that) around the joint. So whatever the answers to my questions may be, that won't change the fact that my shoulder, something I rely on in almost every aspect of life, is deteriorating far earlier than it should and that eventually it will likely get to the stage where I am no longer able to function independently with it. 

Fears Going Forward

I know this may all be coming across as a tad dramatic on my part; after all there are plenty of people with disabilities who already require assistance everyday, most able-bodied people will start to need a similar level of help once they reach a certain age, and I'm not currently at the stage where I definitively need help yet. I think that at my core, it boils down to the fact that, having fought so hard to regain my independence post-injury, losing it again would feel like a bitter regression and upheaval.

So there we have it, maybe not the most inspirational New Year New Me post to enter 2022 on, but something that's been playing on my mind a lot recently. If anybody has any thoughts or advice on this subject then by all means let me know either by commenting on the Active Hands post or by visiting my Blogspot page. Like I said, I know I'm not at this stage currently, but I think hearing other people's stories could help prepare me if/when the time comes. And if this results in a dozen comments telling me to "grow a pair" well, I guess I had that coming!

God help me if I ever regress back to whatever this stage was!

G