There are several readings planned to showcase the issue – one has already taken place (unfortunately on the same night I was reading for Brewery Poets), but I should be reading at one later in the summer.
Notes on ‘Sister Running’; ‘Strength in Winter’; ‘Perihelion’.
On the surface, the thing that most strongly links these three poems is that they have a lot of weather in them; a lot of sky. One of the things I most love about Grasmere is the sky: its ever-changing moods; the complexity of its little-lit darkness; the long summer light; the sharpness and excess of stars on a crisp night, when you can see the milky way. They are all also in some way about friendship, the ways we relate to our loved ones, and a sense of shared understanding. […]
I did the recordings whilst I was staying at the Watford Mercure for a three-week pain rehab programme run by The Royal National Orthopaedic Hospital at Stanmore. It’s the only course of it’s kind in the UK, and the only dedicated programme offered to people with EDS (if you’re fortunate enough to be referred, as I was). Not everyone who does the course has EDS, and it was originally designed with spinal patients in mind, but has been adapted as Stanmore has grown as a specialist centre for EDS. I wouldn’t recommend the Watford Mercure to anyone (although their ability to cock up every dinner for three weeks in new and amazing ways was spectacular in a way) but the rehab programme was definitely worth it.
As ever, I came home to an enormous impossible backlog of admin and marking, and I haven’t had a chance yet to properly process everything I learnt, or to reflect back on the three weeks. What I can say, is that I now feel I have more of the tools and knowledge I need to help myself in the future, and to avoid the downward spirals of injury and de-conditioning that have made me more ill in the past. Also, that looking after myself needs to be a priority, not an afterthought. May is EDS awareness month, and though I’ve been talking to a lot of people about my experiences, I thought it would be useful to write something too, even if it is brief.
I was very nervous before starting the course. Like most people with EDS, and indeed, many people with chronic conditions, I’ve had a lot of bad experiences with healthcare professionals. I try not to expect the worst, but it’s hard not to worry, especially when it is such a large chunk away from your usual life. I read a few accounts of the course on blogs and facebook groups to try and find out what to expect, as we weren’t given much information before hand, and they all seemed to say the same thing: the course is great if you’re willing to change the way you live, and awful if you’re not ready to think about that.
One of the best things about the course was the group of women I was with. We should have been in a group of eight, but one didn’t show, and the seventh sadly had to leave early because of complications. The six of us who were left bonded really well, which made the difference (as we often spoke of, mid dinner-disaster) between spending the weeks crying in our rooms, homesick and in pain, and crying with laughter together. I got the giggles so badly one day during our ‘water-based exercise session’ that I was crying into the over-treated water. We all remarked on how relieving it was to be around people who – whilst they might not understand the particularity of your personal pain – understood you were in pain, and could recognise when you were struggling, without you having to articulate it. I feel very lucky to have met them all.
The Watford Mercure is a remarkably ugly and poorly laid-out hotel: a post-war labyrinth of broken ceiling tiles and unnecessary steps. It is on a bypass road, and benefits from being completely unreachable by public transport. Our group in our various states of fatigue and pain felt very trapped there, with the disastrous food, the malfunctioning coffee-machines, and the world’s slowest stair-lift between our chair-using group member and the lobby. We joked about feeling like we were in Girl Interrupted. Although there was something about the whole thing that made me think of school too (not just the giggling and the crumbling building). It felt like a low security prison crossed with a summer camp for mutants with unhelpful powers. By the second week, we’d realised the only thing we could reach by foot was a McDonald’s right next door, which could at least supply us with snacks and drinks. When I broke out one morning through the permanently propped-open fire exit, and stalked across the needle-strewn car-park, I found a horse tethered on the patch of grass between the hotel and the drive-thru.
One of my fellow internees wrote a blog post about the programme a few weeks ago, which says pretty much what I wanted to say. The days were a mixture of groups activities and talks, and one-to-one physio and occupational therapy sessions. The PTs and OTs were humane, human, and helpful (on the whole). This shouldn’t be an unusual combination, but all of us had experienced otherwise in the past. As I’ve said before, this is one of the most important things to remember about people with an under-diagnosed condition like EDS – we have all been written-off, gas-lighted and insulted by medical professionals at some point in the past, if not continually, for decades. We’re the rescue-cats of patients. It’s no good telling us anecdotes about patients having different views of their treatment to their doctor, and expecting us to side with the doctor (no names mentioned!).
Apart from meeting the others, the physiotherapy was the most useful part of the course for me. We all went away with physio programmes tailored to our needs, and I certainly felt the difference immediately. It is up to us to keep working on what we have learnt. The most important thing the programme teaches, however, is around the tricky idea of acceptance. We were all there because we have chronic conditions that cause pain. We weren’t there to eliminate pain from our lives, or to reprogram our genes like neolutionists. We were there to learn to turn huge peaks and troughs of pain and activity into rolling hills or gentle waves – to live more comfortably – not to ‘get better’. A lot of what we talked about was how we can change our lives to make them less disabling, and to remove factors from them which make us more ill than we need to be.
There is a lot more I could say about this in relation to trying to function in academia with chronic health issues, and the insidious ableism of Academe, in a week when many friends and colleagues are striking for better pay and working conditions. Instead, I need to get back to my marking, to pace it a bit better than usual, and try and not let it hurt me too much.