Almost 3 weeks into life with daily visits from carers and it has been a huge adjustment to navigate. I’ve never felt so clean, buffed and pampered. The guys are very caring and compassionate. It is still a massive change and a learning curve with yet another life adjustment.
The last few months I have been opening up through therapy because I needed to offload thoughts and feelings. I know that it may look as though I have my shit together, but I don’t and that’s okay. Living a disabled life has shown me how people like me are treated differently and how there is still so much progress to be made. I have seen others view disability as weakness or that I lack coherence and am oblivious to life around me. Disability is often seen as incapable. The truth is, we just do things differently. MND is not pretty but its how you just get on with it that gives it the middle finger.
Whilst disability is robbing me of my body, it has given me a superpower that has heightened my senses. I I see far more than others realise. I hear more than I ever have and I’m hyper-vigilant to my environment.
I was recently sat near a group of people who were talking about how they’d hate to have a terminal illness. They of course meant no harm but the truth is there are many people in my situation. I was once one of these people years ago and now here I am facing my own mortality. Never did I imagine it would happen to me, but it did. It can happen to anyone of us at anytime. Life can and does change in an instant.
MND has taken so much away from me, but it has also opened my eyes to many things. It’s shone light and there’s been lots of lessons learned about all kinds of stuff. I’ve been grieving my pre-MND body and all the amazing things it did for me. I miss that Sam.
I’m still there, albeit less mobile, older but so much wiser!
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