“Someone should write a song about it,” my friend quipped. “Put it to that Alanis Morissette song, about irony. Because it is, isn’t it – ironic.”
Interest piqued, I began composing lines in my head. Yes, it’s got a tinge of irony, this condition. There are elements of it that elicit a wry smile, and there are parts that frustrate and break you, sometimes.
But mostly, it is a condition that feels misunderstood. My friend’s words were a challenge to begin to change that.
Later that afternoon, at the piano, I recorded a very rough draft of what MS is like for me. Only for me; it is important to understand that it is different for everyone, but there are some parts that are common amongst our community.
A day or two later, and my clever friend had managed to take what I had put into words, and add images to it, marrying the sound and the sight of our condition into this video.
If you have MS, or a similar, chronic condition such as fibromyalgia, or another autoimmune condition like lupus, or any experience of ongoing pain, degenerative illness and something that seems invisible to others, you might be able to relate to this.
If you don’t, it just might help you to understand what it is like. For a moment, you might feel what we feel (or what we don’t, if the first line is anything to go on!)
Go to my Substack to hear the song:
https://drevedarwood.substack.com/p/feeling-it-through-music
themoondidnotexplode 