I flew from Colorado to Boston and Jesse met me at a rural bus station not far from New London late that night. I’m staying with Lindsey, Jesse and their parents Jim and Grace. We all met when I was twelve years old on one of the best family holidays of my childhood. Lindsey was the niece of a friend of dad’s from university and the family had let us use their grandparents lake house for a couple of weeks (my parents had to be inventive when it came to holidays when we were growing up). My siblings and I were in America, diving into water, eating a ridiculously sweet brand of ice cream some hippy friends of theirs called Ben and Jerry had invented. Lindsey and I always kept in touch and we both ended up becoming musicians.
I got to know Lindsey’s older brother Jesse later on when he lived in London with his British wife. Being back with them all now feels as if I’m with cousins or even siblings. The family live in farm buildings that sit in the endless expanse of bright green (and in summer months - typically for New England - bug infested) trees below Mount Kearsage.
Most of the family members form The Ragged Mountain Band. Jim is a carpenter and they spend hours chatting around the kitchen table late into the night and sometimes don’t get round to eating until nearly 10pm. While my blood sugar levels found that more of a challenge, a family member has had ME for eleven years and they are looking after me amazingly. We're also enjoying sharing lots of notes - as with so many other people I encounter with ME/CFS, we'll all have a unique way in and out of the condition but the similarities and the challenges that we understand will always be uncanny. At the perfect moment Jesse will hand me a boiled egg for my blood sugar levels and and just say, “Jess, you need this now”. And he’ll be completely right.
The thing is, I am feeling and acting less and less as if I have ME/CFS at the moment. To the extent that I’m using the past tense when describing it all.
An ME/CFS Thriver