Worst/Best/To The Moon

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For the academically-attuned, there is more than one start to the year, and perhaps that which begins sometimes between early September and early October is the more poignant, and evocative. So instead of reflecting on my year in January – which I didn’t feel able to do this year – I’m doing it now.

I’ve written before about how this time of year now always makes me think of Dar William’s song ‘End of the Summer’. The song perfectly captures for me the doubleness of this time of year – the nervous excitement of something new beginning with the new school year, and the slightly ineffable sadness that goes with it. A long time ago I wrote a pretty bad poem about this, about how whilst I always feel better in the summer (a simple prescription of long bright days, swimming outdoors, more time Just Being) I love melancholy autumn: the first woodsmoke; the first frost; the long yellow light. At times I have feared it too though, knowing that I’ve barely crawled through the kinder months, certain that winter will push me under.

In ‘The End of The Summer’, Autumn is both the time we ‘push ourselves ahead’, and the time ‘when you send your children to the moon’. The two are one and the same. The singer dreams of being sent to the moon instead of school. She knows she will crash, in that way we do in dreams, but she doesn’t want to tell her family, and disrupt the preparations and the routine of starting that process of pushing ahead. She sings that she doesn’t tell them because ‘there’s just some moments when your family makes sense’. What does this mean? That to admit the coming catastrophe breaks the sense? That she wants them to have this last morning to remember, intact, without the foreknowledge ruining the comfortable dailyness? That she knows they can’t do any more for her now, than help her put her sweater on in this dream of childhood? In some ways this is a song about accepting that we always have ‘to learn again’, no matter how far we think we have moved beyond schooling.

I have been doing a lot of learning again this year. Learning what I am, more than who I am, and how to live without crashing. I haven’t written much about this year, or the latter parts of last year. It’s been a difficult time in many ways, and it hasn’t seemed right to me to share too much of it before I was able to digest it a bit.

Starting venesection in January (the letting of blood to reduce iron levels) put an enormous strain on me, when I was already at the brink of functionality. Unlike many people with Haemochromatosis, I only have my pint of blood taken monthly, but the combination of Haemochromatosis and EDS, with its complications of autonomic dysfunction, meant I lost at least a week a month recovering from the loss, if not more. Since my second venesection, I have a saline drip at the same time as the blood comes out, balancing my blood volume out a bit. This is because my first one at the end of January completely threw me off balance. It felt like all the hard work I’d been doing to manage my Postural Tachycardia symptoms had been undone in an hour. For the next two weeks I was stottering around in a state of dizzy confusion. I was even dizzy sitting down. At the end of the first week, I went to the hospital on the advice of my GP, and they basically shrugged. My haemoglobin levels were fine, and they couldn’t see any obvious reason for my symptoms. In the end, I rang the Autonomic Clinic at Queen’s Square, who diagnose EDS-related dysautonomia, and they suggested the saline drip. It’s certainly helped, but my post-venesection hangovers are still pretty vile, and unpredictable. Sometimes they just take up one day after the bleed, sometimes, as with this month, they lie dormant for a couple of days, then lay me flat (literally) for a week. In that first dizzy fortnight I hurt my left foot badly walking across campus between classes. This week I finally had an MRI to see whether the damage to my fifth metatarsal is bony or ligamental. My money is on bony, but we’ll see.

All this would not be quite so taxing on my body if I weren’t also working full time. I saw Occupational Health this time last year, who suggested a reduction in hours, which for various reasons didn’t happen last year. I pushed through, because that’s what I’ve always done, have been taught to do, have had to do, but by March there was nothing left to push with. I’ve had a lot of problems with particularly bad muscle cramps since starting venesection, which no one can really explain (I have theories about volume loss + electrolyte and mineral loss + extra physical strain = boom, but). In March I was sitting at my desk marking online, when something in my neck made a sickening crunch. I already had a bit of a head and neck ache, but it began to get worse. I thought I might not make it through my classes the next day, but carried on, holding my head up with my hands, which was the only way to make the pain almost bearable. By the time I got off the train back to Cumbria that evening, I couldn’t really stand up anymore (with the wonderful synchronicity of the world the man sitting opposite me on the train knew about EDS because of a tragically too-late diagnosis in his family, and we had a great conversation through the pain). The next day I took myself to the GP by inching through the car park to the bus stop, and stopping to rest my head in my hands when I couldn’t go further. If I supported my head, I was almost okay. If I let it go, within seconds the pain was so excruciating I couldn’t think at all anymore. Over the course of the next days, I counted it. 52 seconds to wailing insensibility.

On the bus, I held my head between my knees and tried to focus on my breathing. At the GP I saw someone who didn’t know my conditions too well, and thought I’d pulled a muscle, and prescribed some anti-inflammatories. I went home hopeful, but they didn’t work. By this time, I could only lie on my right hand side without crying. These things of course never happen at a ‘good time’, as though there is one, and this was a week I was doing both first year lectures, as well as my usual classes. I had to miss the first lecture, and some classes, but this seemed to cause all sorts of chaos and disapprobation, so I travelled up to Glasgow on the Friday to give the second lecture. I gave it with my head propped in my hands, and managed the train journey by lying on a table with my head turned to the right. Needless to say, this didn’t help, and by Monday I’d realised the drugs weren’t working at all, and had started to get a bit scared. In the hospital, they got a bit scared too, and did a CT to check for vascular insufficiency before deciding it was, indeed, only a massive muscle spasm. This took 12 hours, of course, because I got forgotten about mid-evening. We arrived home in the pre-dawn, but with muscle relaxants, and helpful advice from a rheumatologist who actually knew about EDS.

The big revelation of this episode – apart from some serious issues around how my workplace has no contingency for illness – was that the CT showed nodules on my thyroid. Nodules in a stage of recovery, which no one now seems worried about, but all that time back in 2009/10/11 when I was certain there was a lump in my throat and couldn’t get anyone to do a scan? Well, there was. Who looks stupid now?

It took a good four weeks for my neck spasm to slowly ease off, which really messed up the end of term. I hate missing work, and the thought that I was letting my students down, and that my colleagues were unhappy and stressed too, was not helping. I was also worried about taking three weeks out, after this, to go on the Stanmore Joint Pain Rehab Course, which I wrote about previously. As it turned out, the course was exactly where I needed to be to help me not only manage my physical symptoms better, but learn to deal with the guilt and pressure around work in a more helpful way. I feel more able now to say no to things I know will add too much strain to me, and to ask for help when I need it. I also have a much clearer idea of what I need to set in place to make things better for me in the future.

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This year, most of that help is coming in the form of a reduced work load. I’m not saying I don’t feel guilty about this, but I feel far more circumspect about it than I would have done a year ago, or more. If it makes me more useful – to everyone, including myself – then it has to be a good thing. There is a lot I could write about how insidiously ableist Academia is, and how watching healthy peers making themselves ill to try and progress  or just meet minimum requirements does not inspire me with confidence that there is a place for anyone with a chronic condition in the current system (many other people have written much more about this). All institutions are not equal of course, and some are better or worse at making accommodations (as they must do by law), but this does not change the basic conditions for employment and progression for early career researchers being stacked against anyone who does not have superhuman stamina. Aside from the barriers facing students with disabilities to get to post-grad level, I have watched many wonderful teachers and researchers drop out of academia because they were no longer willing to sacrifice whatever part of their life they were having to set aside to try and succeed. The problem is that this continues to reproduce a working environment which is unsustainable and hostile to most people. I don’t know at the moment what my future in academia will be (and I very much still hope to have one), but I am very clear that I cannot continue as I have been the last few years.

Despite all this – the physical and emotional toll of the year, the questions it has raised about how I live now and how I can move forward – it has also been threaded through with wonderful things, and great days.

Much of the Stanmore course was focused on helping each one of us to live a fuller life, whatever that meant to each of us. This means working with any limitations, and not against them. Over the last few years, I’ve been in an untenable pattern of work and collapse, with very little space for any actual living. My main goal for this year is to tip the balance towards living. It’s a trial and error thing, and I’m definitely a learner. I still have a tendency – after a life-time of practice – to push myself too far on the good days, and try and push through the bad days. I thought there was no other option: that if you always feel bad, you will never do anything if you don’t push on through it. This year has shown me just how much that doesn’t work.

This month, it’s ten years since I left London, and moved north to start my phd at Lancaster and the Wordsworth Trust. That was a monumental shift, but one that I didn’t really have time to think about. I often say that I moved to the Lakes by accident. One of the things I appreciated most about the changes that came with that move was the way it slowed my life down. Suddenly, the things I had to concentrate most on were reading, writing, and thinking. Then, when I actually moved to Grasmere: gathering kindling; familiarising myself with the Wordsworths’ places; discussing poetry with friends for many hours with few distractions. Thinking for me is something best done outdoors, or whilst swimming or walking, or quietly by firelight and candlelight in winter. It is a slow thing. It is a precious thing. Grasmere helped me remember this.

Through everything this year, I have been thinking a lot about how I need to live to live better. By ‘live better’ I do not mean necessarily more ethically, or more happily, or to a higher standard, although those notions are certainly involved. I certainly don’t mean more productively in the traditional economic sense, which I increasingly reject. In part I mean more healthily, but without the victim-blaming whiff of wellness culture that comes along with that. I want to do more of the things that make me feel good – happy and well – and less of the things that make me ill or feel bad. I expect most people mean to do this, but for me it has become a pressing need. If I don’t pay attention to living better, I will be living very very much worse.

In August, I had my three month review for the Stanmore course, during which we reassessed our goals with an occupational therapist. My OT noted that all of my goals were very sensible – pace work, take regular breaks from the computer, do physio, go swimming etc. – but didn’t allow for much fun. When you’re focused on keeping yourself together, enjoyment often gets left off the list. After a discussion, we added ‘going to pub on Fridays after work’ as a goal. I manage to get myself to ‘important’ events much of the time, but I miss the easy sociability of just hanging out with friends and neighbours for a few hours. It felt great to go home with a chart in my bag which listed a positive outcome as ‘going to the pub once a month’, and better than expected as ‘going to the pub every Friday’. Sociability is one of the things that falls away most often and often most quickly for people with chronic illnesses, but it is important to a sense of wellbeing and self-worth to feel part of the human world around you.

When I was first very ill as a teenager, I found simple but productive tasks really helped my state of mind. I loved making soup – there was a something very soothing about the repetitive actions of peeling and chopping, the slow sweating of the vegetables, the final outcome that felt like it was putting all that good effort back into your bones. More recently, peeling and chopping are some of the things I’ve been finding most painful, as I’ve developed more problems with the small joints of my hands, as well as my wrists (my left little finger, for example, is still not quite right after I dislocated it by whacking it on a conveyor belt at a supermarket in May). I also used to love to make jam though (we had a lot of soft fruit growing at home) and something about the high yield of berries this year has catalysed a preserving instinct.

It started with a fascination with how glorious the rowans are at the moment, then I remembered how easy it is to make jelly, and now I can’t stop. Through another episode of post-venesection spasms last week, all I could think about was fruit. I was pretty useless for most things. Once I got the right medication and it kicked in, I was in less pain, but also unable to focus well on complex tasks. I’ve learnt now to just accept these days, and do what I can.

Dosed up, and feeling far more Coleridgean than I prefer, I sat in the garden and picked stalks off berries. It was something I could do that felt meaningful and useful. All the metaphorical implications of preserving is there for a reason – when you make a bright, clear jelly, you can’t help but feel you are storing up something of the summer for those dark winter afternoons when you have nothing else left. You want to simmer things down to something really fine and strong; you want to find the spell in it that turns it into something precious; you want to keep all the light and goodness in any way you can.

I have made rowan jelly from trees in Town End and by our old house at Holly Grove, with a few windfall crab apples added in for the pectin. I have also made apple and mint jelly with apples in the Town End orchard, and mint from our garden, which is one of the many things that has grown fantastically this year. It’s not labour intensive, though I also am very aware that this is the first year in many that I’ve felt able to do anything at all like this, especially at this time of year, with new classes hovering. No doubt this is due in part to my lowering iron levels, and not just my reprogrammed patterns of activity. My bad reactions to venesection have forced me to accept just lying down and doing nothing at times when I don’t want to, and this has been an important lesson too. Sometimes doing nothing is as productive as doing everything. This could be a lesson in Being Wordsworthian, of course. I often joke about how I’m going to just lie in a ditch and look at the sky, Dorothy Wordsworth-style, but I’m only ever half-joking. They knew what they were at.

What I am learning again is how and what to prioritise. This weekend I need to work, because I lost several days to illness this week, and there are things that must be done. But there are also things that don’t need to be done. That can wait, or be delegated, or just have to be missed to allow something else to happen further down the line.

After I have written this, but before I have uploaded it, I will join our neighbours and their new baby by the lake, to chat in the September sun, and have what may be the last swim of the season. Each September swim may be the last of the season. Later still, my partner’s parents will arrive for a visit, bringing more fruit to preserve from their smallholding in Suffolk, and I will cook a stew with the some of my first, too solid rowan jelly as a base. It will be delicious, as will the swim and the sun.

Managing chronic illnesses is unpredictable. You never know when an injury or a flare up is going to scupper your best intentions. But slowing everything down makes that less likely. This is my call out for a slow life. This is my testimony to the end of the summer. Pushing ahead will mean something different from now on. Let the dark and frozen ground come. Let the crash come, if it must. All that matters for the moment is that you can spin the light to gold.