For the First Time….

Three years ago, I started a project called #FortheFirstTime and I documented my firsts since I had become unwell on my Facebook page The World of One Room. The experiences I was having was as if I had started life again. When you are seriously chronically unwell, it’s important to not lose hope of what seems to be lost. There were small things that I wished I could do and so many big things too. The longer that I was unwell, the more I realised that in order to achieve the big things, I had to start with the little things. The sort of things I’m talking about are those that people don’t even think about: I wanted to wash my own face, I wanted to open the curtain and see the stars, I wanted to brush my own teeth, (there’s nothing quite like it!) and I wanted to be able to give my sister a hug.

When you go back to the start, the memory is ingrained in your being. Mostly, because you realise how very lucky you are to have these moments again, when you can truly appreciate it. Let’s be honest, we don’t remember the first time we were able to smile or hug someone. So when you manage to finally have the energy to move and hug a person, it is a truly incredible human feeling. Ever since I lost so much, everything I manage to do is mind blowing.

On Facebook memories, it came up as the first time I had laid outside and actually enjoyed looking at the view. Normally, with severe Myalgic Encephalomyelitis, I would be hidden under blankets with dark glasses on as well. I hadn’t actually seen anything outside in so many years that I relied on my imagination to think what a garden looked like. Whether that be my back garden, or a professional garden. The first time I saw that view on a summer day with only my dark glasses protecting my eyes, I thought I must be in a different country – it was fabulous!

I’ve been slowly ticking off bigger things of late: learning to walk a few steps, standing, and even getting married! I hadn’t even put ‘getting married’ on my list because it seemed such a big goal it was unimaginable! Amongst those ‘firsts’ was the first meal we had ever had as a complete family of the Taylor’s. It was a miracle, and magical all at the same time. It would be easy for me to forget the significance of the small things because now I am taking on bigger tasks but I really don’t. As a society, I think we do forget the small miracles of life. In reality, for people living with chronic conditions, it becomes a miracle to get out of bed in the morning, let alone have the energy to do anything after that.

People generally get up and go to work, then moan about their lives and of course the weather! When they actually missed the first two miracles, getting up from bed, hugging and kissing goodbye your loved ones and manoeuvring their way whether it be on wheels or using their legs to get to work.

Those who lose everything through no choice of their own, seem to hold onto the miracles of the day. Never taking for granted that you could lose it again. The little possibilities that days ago were never there, remain remarkable. I will always treasure the firsts, and maybe by seeing people like me, people can join us in feeling remarkable at everything that is miraculous: life itself.