Today's the day I finally get to tell you about Dorothy. And her place in my recovery.
By Summer 2017, things were getting marginally better but weren't exactly great either. Walking was very limited, my world still wobbled and strange flu-like symptoms seemed never ending. Despite project managing my recovery as sensibly as I could, I had been ripping through my savings in doing my best to turn the corner on ME.
I stopped being an advocate of anything that could smell like a Protestant work ethic a long time ago, but losing your ability to work has turned out to be one of the greatest losses of chronic illness. It was sweet and wonderful that I was now well enough that everyday tasks like washing my hair or making a meal no longer presented a major challenge. But one of the flip sides of getting slightly better, is that while you're now well enough to miss the structure, community and sense of purpose work can bring, you might still not be well enough to do much more about it (yet).
I remember almost willing something out loud, 'please God' (the more important point is that I believe our words and intentions can have a lot of power in them). 'Please God, find me something I can do'. And I randomly threw a number out there as I have heard that the force of life appreciates precision: '£120 a week would be great'.
And that same week a close friend rang and asked if I would help look after her mother. Dorothy is in her mid-80s, has severe dementia and at that point lived only a few yards up the road. My job entailed shuffling up Pooles Lane in the early afternoons, letting myself in to Dorothy's house, and many days curling up in an armchair so that she had someone next to her while she napped. I was keeping her company while her live-in carers had a couple of hours off. For exactly £120 a week most weeks. Yes, I found a job where I got paid~~to~~sleep!
Other days were less straight forward. If I opened the front door and saw fruit bowls and shoes stacked inside each other in strange places, it was usually a sign that Dorothy would be having a more anxious episode. Perhaps her carer hadn't had any sleep that night because Dorothy had been continuously walking up and down the stairs, locked in a state of distress she couldn't find her way out of. I would take her out, hoping that a change of scene might loosen something tangled in her mind. One of our more memorable outings, mostly prompted by Dorothy, involved both of us trying to climb a giant tree in the church yard, spying on people as they walked up the hill from the station and her drinking directly out of the spout of a teapot in the local Deli. On good days I could deliver her home in a very different emotional state.
We'd cuddle up on the sofa and watch TV together. Spend hours sat there, doing nothing more than listening to music. And we would both laugh until we cried. Dorothy can be, and can find things, hysterically funny. We would sit there in tears of laughter, our bellies aching.... her saying 'I can't, I can't'.
I was nearly always nameless to Dorothy. I became someone whose role in her life changed vaguely and intermittently, moment to moment from best friend, to colleague, to mother, to daughter and occasionally, a stranger. And who I was to her didn't really matter half as much as the simple fact that I was there.
I wasn't always able to be very active. In contrast, Dorothy was robust and very fit. I would keep one eye constantly on the door; Dorothy could disappear in a flash and cover a huge distance before being found. I'd often ask her to look after me. Tell her when I wasn't feeling very well (which was far easier than my hanging on to her). And she would hold my hand tightly, keeping me safe as a car narrowly skimmed the pavement.
I spent 6 months as Dorothy's respite carer. When at its worst, chronic illness forces you to understand that you have an inherent value as a human being - you don't have to be turning the cogs of capitalism to have a sense of belonging in the world. And it's often painful getting to that point, to lose the way you always operated out in the world. And at the same time, finding a sense of purpose and somebody who I could make a difference to, I believe, played a big part in my walking and activity levels gradually increasing. You have to find a daily structure that supports you, as soon as you are strong and able enough to carve one out for yourself.
It's rather strange writing about Dorothy now, knowing that she will never be able to read this. You need to know that she has had a remarkable life, worked as a teacher and had four children. Dorothy moved to a home for specialist care with a large vegetable garden and chickens in the early summer 2018. She is surrounded by company and well cared for. I'll be visiting her again soon.
Dorothy taught me two things; firstly to be present. Much of our time together was a bit like being inside a cross between a Beckett and an Alan Bennet play. Where we were, what sentence we were in the middle of was constantly in flux. My job was to dive in and be with her, wherever she was, inside of each unfinish-able moment. It was a game of constantly improvising. And we both often found our own kind of rhythm and quite often even joy in it.
Dorothy also taught me how lucky I was: while her mind was unraveling, I had all my lucidity and my whole life in front of me. My situation was get-out-able of. And there were moments when because of the circumstances I was in, we understood each other more than many might. There was a time when she so wanted to swim but whenever we approached the pool, kept feeling too dizzy and nauseous to step into the water. We kept trying.
That day we decided to give up on the idea. It was too much. She had an occasional moment of near lucidity; "Something's happening to me, I know it. This isn't right".
And I didn't know what I could truthfully say, except, "I know Dorothy. I promise, whatever it is, you won't ever have to do this all on your own".
An ME/CFS Thriver