Several things today have given me a mini realisation, and I thought I’d share it here.

The first was this morning, trying to get my boys ready to go to school/playgroup. I was trying to get my 3 year old, Ashley, ready by putting his shoes on. In an effort to get himself sufficient, I was asking him to get them on. He just sat in front of the TV, moaning that he couldn’t. The fact that he was still watching the TV and hadn’t undone the velcro strap appears to have escaped him.

I turned the TV off in an effort to get his attention fully focused on the task of getting his shoes on. He didn’t like that, but tough. I asked him to look at what he was doing and encouraged him to undo the strap. Even that was a chore, but he managed. I continued to coax him into doing it all himself, but his temper got the best of him and in a hissy fit, he kicked his shoe off.

*sigh* Back to square one.

We eventually managed to get the first shoe on. Then I asked him to do the next shoe. “I can’t!” was the simple answer. Again, the fact he hadn’t tried and had just got his first shoe on seemed to escape him. After some more, gentle, coaxing, the second shoe was on. With a sigh of relief from both my Father in Law and I, we tried the coat next. Again, another task, but apparently easier than the shoes.

What I had failed to see here was that he was tired (from getting up in the night), not a morning person, and wanting things done for him. There was also something else that escaped my attention till now.

Later that morning, I was speaking to my niece on Facebook messenger. She has been going through some very tough times health wise recently, but has the kind of soul who is more concerned about others and therefore was catching up with me. We chatted about the difficulties she’d been having recently and how she felt she was letting people down by not trying hard enough. By this point, I had moved into the bedroom and was thinking about getting dressed. When I saw this comment, I immediately started, like any good uncle, to disagree and say she wasn’t letting anyone down till she quit.

And that’s when it hit me:

There I was, still sitting in my pyjama’s, working up the courage to put clothes on. This is a battle I face everyday. Sometimes, I’ll stay in pyjama’s because the thought of taking them off then putting clothes back on is too much to bear. This isn’t simply a matter of trying harder, it’s a matter of deciding if I want to live with the pain after I have got dressed, or save my energy to do the washing up, like my wife asked. To someone without CRPS/RSD, this sounds silly. But I know this will resonate with my friends who read this. And this is why disabled are often labelled as lazy. It’s a matter of context. It’s like standing at the bottom of a sheer cliff with the other person is at the top. To the second person, there is no cliff, they are standing next to you.

So how does this relate back to my niece? Well, the fact that she is trying to get better, rather than just letting it take over her life, is a massive step. Bigger than people take for granted. They say that admitting you have a problem (what ever that may be), is often the first step towards recovery. This is true, but what the don’t say is that the hardest step is to actually try and change. To many, getting dressed is a task that takes minutes (once they know what they want to wear, of course). For me, it’s a task that can take anywhere between ten to twenty minutes, depending on my pain and energy levels, even with my wife’s help. Even when energy is high and pain is low (AKA a good day), by the time I’ve finished, the levels have often swapped, and I need to rest to face doing anything else. It’s not a ‘simple’ matter of trying harder to get dressed, but real battle between keeping these levels in optimum balance. The same is true for my Niece. It’s not a ‘simple’ matter of trying harder to get better, because trying is the hardest thing. Same with Ashley; I need to remember that, for him, putting on his shoes is difficult. It’s not a case of simply trying harder, it’s a genuine struggle for him to co-ordinate his hands and do it without becoming frustrated and giving up. We need to remind ourselves that everything we accomplish, when the trying is too daunting, is a massive tick in the win column.

The same is true for people who don’t have a disability or fighting health issues. For example, I love writing, but often don’t feel up to it (mainly due to CRPS, but equally due to laziness). So when I make the effort to open my laptop and start tapping away at my keys, that’s a massive win. Going for a jog is good for you, we all know that. But when you look outside and see it tip down with rain/snow or blowing a gale, it’s much easier to turn over and stay in the nice warm bed. Actually getting up, strapping on your running shoes and going out for a run is a massive win.

So remember, the fact that you’ve started to climb that cliff, rather than turn around in defeat, is something to be proud of, and something the person at the top of the cliff won’t be able to see till you explain it to them. They still may not be able to see the cliff, but they’ll understand why you’re so daunted about climbing it. There is no try harder, because the hardest thing is trying.

Just for the record, I asked my Niece if I could write this and was given the green light. So I dedicate this to all climbers, and especially to my Niece, Rebecca Ross. May you keep climbing sweetie, and race you to the top!