And the days are not full enough’

And the days are not full enough
And the nights are not full enough
And life slips by like a field mouse
                Not shaking the grass.

Ezra Pound

I live with chronic illnesses. I live with fibromyalgia and chronic myofascial pain and have done for over thirty years. I had a life of work, single parenthood, art, performances, poetry and the occasional lover. I liked my life I worked hard and played when it suited. I was working, studying, teaching, raising my kids, life was good. Then came giardia, then came a nasty flu I never seemed to recover from, then came fibromyalgia, but I didn’t know it then. I’ll spare you the details as I’m sure that you’ve heard it all before from other people with their lives turned upside down by illness and disabilities and anyway, this isn’t about that.

This is about the things that get you through the tough minutes, hours, days weeks. Days where your body won’t cooperate but your mind is clear, days when the body is good to go but everything takes forever because of brain fog and those days where neither works and you wonder if existence is even worth the effort. This is about the people who reach out even if you don’t know them in real life, people who share a laugh with you online and people whose creative output shines clear and bright on dark days.

You might wonder why I’m writing now. I’m writing now because I see so many people who are living similar lives now in a post Covid world. I see those with Long Covid and those with long term vaccine injuries who are facing the same challenges I faced trying to get diagnosed and trying to get help in a world that wants to move on and forget. Conventional medicine isn’t great at helping people with long term illness especially when there is no money to be made from them. When our bodies don’t respond to medication and the latest trial treatment we can be made to feel like recalcitrant children spoiling everyone else’s fun.

We are left to find the answers for ourselves and to find a way to joy through the pain, frustration and loneliness of the illness and when we do, to be happy in our new lives. The world won’t understand that we can be in pain and be happy, be struggling and be happy because the dominant paradigm about chronic disease and disability is that these things preclude happiness. So I’m saying to you…You are allowed to be happy. You are allowed to find joy in what pleases you. You are allowed to have fun and socialise even if you have to pay for it with downtime afterwards.

And to all those whose music and art has helped me get up, get out of bed and do what I can with what I have on any given day, a big thank you. You helped me find joy in my present moment. And that is all any of us have.

We may live with illness and disability but we don’t have to suffer.

We are allowed to be happy.