Hope

I actually said it out loud today and because I wasn’t immediately told to shut up, I’m going to dare to say it online too.

I am so disabled by my various impairments (I counted and I have ten different disabling conditions and illnesses so far) that whether or not I will ever be able to work a full time paid job or work for money at all is in doubt. Like pretty much all children, it was always assumed when I was growing up that as an adult I would work and earn wages. There was no question of “if” I would work, only “what” I would attempt to get employed to do. Now there is a question of “if” I will ever be able to work and, whilst some days that uncertainty fills me with fear, much of the time I actually find it quite…. Freeing.

Yes. I did just say that. Being chronically ill and disabled is painful and upsetting but still gives me a freedom that I could never have if I was still tied to the notion of working for money. Give me somewhere to live and enough food to eat and I will do so much more with my life than I could if I had to work full time. I will write and I will make friends and I will fall in love and I will parent children. I will help people, I will try to make the world a better place.

Being free of the expectation of work makes me feel free to be and do whatever I need. Free to disregard assumptions about what adult men are supposed to be like and follow my own hobbies, my own dreams – no matter how others might see them. My future is massively uncertain, and yes that scares me, but from that uncertainty I draw hope.

Hope that I can craft for myself and those I love a life that is joyful and full of caring and love. Hope that despite the ridiculously unlucky hand I was dealt in life that I can play that hand beautifully. Hope that I can continue to have the strength to disregard other people’s ideas of who I should be and how I should live and live a life as unconventional as I am.

I don’t always feel like this and I’m surprised to be feeling this way whilst writing my PIP form. But I know that disability is far from all bad. I love the people I’ve met through being disabled, I love the ingenuity and creativity we as disabled people tend to develop as we navigate a world that wasn’t built for us, I love how strong and tenacious we become and our sheer audacity in continuing to demand lives that we can live not merely survive.
Being chronically ill and mentally ill may have taken away the life I thought I was going to lead – but it left more than just nothing in its place. I have been left with the challenge of creating a life around myself that suits me and mine.

When I’m struggling, I hope I can remember that this is what I’m fighting for. Not an ordinary life, not someone else’s idea of a “normal life” but a life for ME, a life that I can live.