I wrote a new song during ME awareness month 2021 and thought I’d share a little about it in this blog.
There were so many people sharing their experiences of ME in so many ways during ME Awareness month this year. I particularly enjoyed the MEAction artist’s salon which was an honour to attend, and seeing Anna from ME, Myself and I breaking through fundraising records with her Blue Sunday Tea Party for ME initiative. I’ve also enjoyed reading ME Association Champion Blogger posts throughout the month. While some expressed frustration that there appeared little media coverage, what struck me was how important the month is in building community. I’ve made two new music friends this month and after seeing my video of a song I wrote, we’ve discussed making music together! One friend even took a recording of my heartbeat and made it fit a song I’m working on while a third ME friend is going to help with playing bass!
So for me, ME Awareness month this year has been about affirmation and solidarity.
I wrote the song ‘Dreamers in Disguise’ while thinking collectively about the global ME community.
Listen to Dreamers in disguise by Talmandan on #SoundCloud
We are finite and we are limited. We can grow but we can’t catch the light. We are crowded in but we isolate. These days they are unforgiving.
We are reduced and we are hidden. We see beauty through a darkened lens. We are hopeless but we are hopeful. We are not what we used to be.
I wanted to capture some of the feelings and universal experiences that are lived out by those of us with ME, but I also wanted the song to be a call to the medical community to not ‘hammer down the nails on us’ and to ‘give us empathy and see, just how much it means to me’. When empathy is used during an interaction with a medical professional (or anyone for that matter) towards someone with ME it makes a huge impact. I love to hear when someone shares online about an occasion when someone has acted towards them with compassion. While there may be little in the way of treatment, an ear that attempts to understand can be a soothing balm at times. Every step towards awareness is a step away from stigma and ignorance.
We are dreamers in disguise. There is so much potential among those of us with ME. And these things are said so many times, but while trying not to sound cheesy, so many of us are dreaming of the life we once had, or a new life that we are keen to get started.
This song collapses into a bridge of woahs. Sometimes I think songwriters use a woah or two to fill space in a song when there’s no decent lyrics to be found, but for me, these were cries of angst for all of us who have been impacted by ME, but also maybe cries that call for unity, and a demand to be heard. A ‘woah’ can express a lot of things.
Before the final chorus I included a spoken word insert:
My dream may be a stunted dream, but it is a dream nonetheless.
We’re allowed to dream of better things. Sometimes our dreams are as simple as making a meal or sitting in the sunlight. They can be dreams that are reined in at times. But they’re dreams nonetheless. I’ve been reading Jessica Taylor-Bearman’s new book, A girl of one room. She had a seemingly simple dream to stand up. And she got there! To others, our dreams would seem silly. My dream is to work a few hours a month in some remit as a social worker. It actually seems like that may be a possibility in a behind-the-scenes remit for me in the medium term future: something I didn’t think would ever be possible for me again. I’m excited but a little nervous about managing a small amount work alongside ME but thrilled that I could possibly salvage some embers of a career I thought might be lost.
Some in the field of psychology may say that those us with ME are choosing, whether consciously or not to escape the challenges of the world. The reality couldn’t be further than the truth. We’re dreamers in disguise.