Link to song lyric video is at the bottom of this post.

I’ve often felt that the concept of being ghostlike was particularly relevant with regard to ME. Google defines a ghost as ‘an apparition of a dead person which is believed to appear or become manifest to the living, typically as a nebulous image’. So often, living with ME, you feel like the image of a person, a dead-like person. We’re like a shade from greek mythology only a grey imprint of the person we were. Sometimes I feel like I literally look grey in the mirror. 

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We’re like persephone, the beautiful god who was bound to live in the underworld for so much of the year before briefly returning to the land of the living, only to have to return to her home below in an endless cycle. 

I wrote a poem around the time of my diagnosis called ‘ghost of me‘ and this song builds on that theme. 

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The song starts with the idea of being rooted and planted like a tree, existing but immobile. For me, these lyrics have duel meaning. There’s an active frustration with being rooted to the spot (I have rarely gone beyond the end of our farm track in the last 18 months) and the isolation that it causes, but there’s also the learning and growth that comes with being rooted as a person. To know where you came from and what values are important to you. We carry on to lines about waiting while others dance and play. I think of my children who live to adventure and explore and how I can’t be part of that process, only to watch and vicariously observe. My wife had a party for her 40th last year and I left well before the real boogying began! 

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One of my favourite things is getting out into open countryside so walking has been an important part of my life. Growing up as a farmer’s son I remember trying my hardest to walk alongside my seemingly giant dad over the rig and furrow of the top side field and always having to half-jog with his strides on a spring morning while looking the stock. My dad and I have often talked about exploring walks in our local area, looking at maps. I’m just saddened that we never made more time before I got ill. 

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One of my favourite lines from the song is the idea of being a preacher without a choir. This isn’t about religion but an analogy for ME patients preaching our loudest to anyone who will listen about the terrible plight of ME and the need for funding and research. For me the choir would be the medical community as a whole who aren’t generally there to endorse and promote our message. And many of those who should be supporting us from the field of psychology are out on the streets effectively encouraging people not to even enter the building with their misrepresentations. 

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Yet despite the melancholy, I wanted to bring some light. I have seen some improvements over recent weeks as I’ve tried a new medication to fend off the post exertional malaise. It’s given me a glimmer of hope that there could be further milestones along the way for the ME community. 

“Sew me into a new dream” 

My daughter, wife and I have been watching the great British sewing bee recently. I never knew I’d become fascinated with learning about how our clothes are made! We watch intensely as we wonder whether the mens’ jacket or ladies’ dress is going to be finished on time. And when it’s not there are many tears and cutting criticism. As a community we’re desperate for a dream to be sewn into but we’re too ill to make our own dreams come to fruition. This is a call to our family and friends, to the research community, to our own GPs. We need advocates to stand up for us. We also need each other, to help us to keep believing that there may be better days ahead. If there is anything that the ME community is good at, it’s being there for each other. I’m forever grateful for those friends I’ve made along the way who keep me going with silly memes and encouraging words. 

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My song ends with the chorus, bringing us back down to earth and the reality that breaks through our dreams. I thought the analogy of a mirage was fitting. We look inviting, we can often look really healthy, yet get close and our lives consist of thinking that it would be nice to have fresh pillow covers but lacking the energy, of shoving a ready meal in the microwave or eating cereal for lunch because our arms are too heavy to make a salad or a sandwich. 

Thanks for taking the time to watch and to read this blog. I’ve really enjoyed slowly completing this project over the last couple of weeks. It’s involved my friend showing me how to use his recording equipment in a cold garage, hours of downloading and learning new software and asking my brother to add his deep singing voice to the bridge and chorus. I’ve probably pushed my energy envelope off the table but I have a sense of achievement. My hope is that the heavy nature of the song will help people to grasp just how debilitating ME is for so many of us.