Share a story – Daniel Moore
Starting an ME podcast.
A friend, Dov Zeller and I are starting a podcast about living with ME and chronic illness, creativity and making meaning. We’re really different people, living on different continents. I’d be happy spending an afternoon watching two football matches in a row. Dov would be found researching for his latest book and making Tempeh when his energy allows. I have followed his culinary lead occasionally and made sauerkraut in the past although I used too much salt and it sat in the back of the fridge for far too long!
If might be that we’re an unlikely pairing but sometimes unlikely works well. We met on twitter back when it was a healthier place and we talk on zoom every two or three weeks. What we do have in common though is a love for photography, a desire to discuss deeper things in life, oh and we both have ME.
When you have ME and meet someone else with ME, there is a common bond of understanding and empathy through shared experience, knowing that they also understand the illness and the deep emotions that the condition will elicit. We will often have a really interesting conversation and will quip afterwards that we should make a podcast. We talked in more detail about how we could make it possible and started sharing ideas over a shared document.
Once we decided on a name, we asked an excellent illustrator who has ME if she could design a logo. If you haven’t seen Lu Baker’s art, please take some time to check her work out. We’re really thankful and pleased with her colourful design of our ‘post-exertional mayonnaise’ jar. Dov and I are both aware that we have really limited capacities and so on recording our first conversation, we limited it to 20 minutes. Taking on new ventures while living with moderate to severe ME seems like a foolish thing, and maybe it is, so we have to manage our energy envelopes accordingly. Yet this is an exciting venture and the difficulty is that, when living with ME, we have to elevate our own weary voices to try and bring recognition and support to each other and to the wider ME community because it feels very much that we’ve been left on our own as a growing cohort of chronically ill people.
We have a number of guests who have agreed to come on the podcast and we’re looking forward to meeting and talking to them: authors, illustrators, artists, musicians, poets, photographers and crafters. We don’t know yet how regularly we can make and produce content, and we want to make the production process as simple as possible to reduce hours of editing and sound production. Having said that, we want it to be good and we want to help build a sense of community, so we might find ourselves walking a tightrope at times where managing our illness will always take priority.
My hope is that in a year’s time we can have a number of episodes in the bag and that people can come to the podcast, listen (or watch on you tube) and feel less isolated. During our introduction podcast I said that I was keen that we had a reality rather than a recovery narrative and Dov also stressed that we want to provide a space to Kvetch, or perhaps a British term would be to chew the cud, or put the world to rights; a place where we can express our frustrations too.
If any of this interests you, please take a listen to us on Spotify under Post-Exertional Mayonnaise or watch us on you tube here.
You can contact us via email at email@example.com and find us on social media. Having a weird name means we’re easily searchable!