The last few days have marked a clear transition in this journey. First a slipping into an utter exhaustion so overwhelming I was unable to lift my head from the pillow without feeling overwhelmed by the effort of it. Then just as I managed to accept that a long planned and very much anticipated holiday would have to be cancelled, an unwelcome if predictable flare up of my MS caused by the heat, and then equally predictably just as I was feeling a bit better I picked up an infection. I’m beginning to feel like a punch drunk prize-fighter staggering to their feet just to be knocked down again. But today with the infection and the heat both receding, I am ready now to stagger to my feet and persuade the ref I am ready for another round. But mainly the battle now is to stay positive and to let time do its thing. 

During the worst of this journey so far the challenge was to bear it. Now the challenge is simply to endure, and to accept that I am no longer the master of my destiny. My MS, my recovery, dictates what I do. I am truly dis-abled. I suspect I am a lot better at bearing than enduring, or accepting. I know I am a lot better at just about anything than being disabled.

The drama of the journey’s beginning is over, the end seems depressingly far away, and we are now in the long, slow, dull middle. I remember flying to New Zealand a few years ago. The hardest bit of that journey was the seemingly interminable middle section when the little plane on the video map of the world seemed to be permanently stuck somewhere between Singapore and Australia. The movies had been watched, meals eaten, some lucky folks had managed to fall asleep, and the rest of us were, well, restless. We wandered the aisles and gathered at the back of the plane by the kitchen area in what became an impromptu bar. We tried to settle now and again, to sleep or read or play yet another game on our smart phones. But it wouldn’t last, and within minutes we were up again. Pacing. Waiting.

When the mind is unoccupied is of course when the little voice seizes its opportunity – “This is it, you’ll be like this for ever.” “Wow you just can’t get going can you?” “This is the beginning of the end you know.” Suddenly the future seems hugely constrained, foreshortened. You start playing the prognosis game: how long now before you have to use a chair; how long before you can’t work anymore; how long before life becomes unbearably limited, or painful, or both? You test yourself, and scare yourself with how incapable you are. You taunt yourself with memories of the glorious, incredible “steroid days”. You start to seek out possible treatments that might help you regain that, as you know the after effects of steroids are so dreadful you couldn’t easily put yourself through that again, even for the ecstasy of those few days when I felt like the me I should have been, the me I would have been if MS hadn’t claimed me all those years ago. Suddenly after all these years there is a new challenge – grieving for the person you were denied a chance to be by nothing more than simple, dumb, fate.

It’s almost a relief from this endless self-sabotage when the blind panic returns – those moments when dreams of drowning invade your day, overwhelm you. I wonder if it is because the dreams have become less terrifying that the thoughts are now coming when I am awake? I still have the dreams, but now as I drown in some new way I don’t panic but accept my fate.

My imagination has been working overtime with the daydreams though. It’s always a new scenario leading to the drowning – a lake with a shore that never comes, falling into the sea from a plane clutching a teddy bear that floats to the surface as I sink, a bath that becomes suddenly deep and incredibly slippery as I try to get out. Still, unsettling as these are, somewhere I think the acceptance in my night dreams is showing my day dreaming self how to cope. What I don’t have a way of coping with though is insidious chipping away at my sense of hope, of a future.  Thoughts and reminders of my life before become a source of grief. Thoughts of what lies ahead are a source of despair.

The mind games are perhaps really just a side effect of the huge effort still required to allow myself to recover. When resting I feel almost normal – the spasms and tremors are infinitely better, popping up only here and there to remind me of what has been happening. The vertigo is back to its normal, low level, ever so slightly drunk feeling. But when I try and walk for more than a few minutes my body screeches “I’m not ready” and punishes me the next day with exhaustion and spasms. I so want this to be over, to be ready again for life.

In my head I have always been free of MS – free to do what I want with a body that happily walks, moves, navigate stairs and wobbly paving stones without thinking about it. The fact that such a body has not been mine for a very long time I somehow rationalised away, or simply denied. Which is the source of my problem. I’ve spent so long coping by ignoring, by refusing to allow my condition to affect my life and choices, that I neglected to think about, let alone work on, how to be “disabled”. I have no version of me that is disabled or that knows how to be in the world like this. In the early days this denial was I think a good strategy. I’m glad I didn’t develop a “sick me” identity. Had I done that I’m pretty sure a business, a masters, a PhD, two babies and a career as an academic would have been impossible to achieve post-diagnosis.  In those early days I clung to the words of the old school neurologist who diagnosed me with the words “Keep a stiff upper lip and don’t sit down.” That thought stood me in good stead for many years. But he forgot to tell me what to do when the time to sit down came, and I forgot to prepare myself for that.

Ironically, though I struggle to understand how to be disabled I seem to be pretty good at documenting the experience of it. I continue to be surprised at the surprise my medical team show when I describe what has been happening to me. They constantly compliment my ability to describe what is happening, my insight. It got me thinking – so much talking and writing about illness is not about illness at all, rather about the impact illness has on our “non-ill” selves, our pre-illness lives. Hence the reliance on the heroic narrative model of illness – we rail against the antagonist illness as we attempt to preserve or reclaim our self (i.e. our healthy self, our self before or free of illness). But to be ill is to be experiencing the effects of disease first and foremost on our corporeal beings. It is the simplicity and violence of this – the base, bodily-ness of this – that most disturbs us in the throws of illness. In the long nights of illness concerns with our other life are swept away in the all-consuming violence of this ill life.

Our bodily self is rarely actively noticed in day-to-day life but when we are ill our bodily self becomes the focus of our attention. Like a child alone in an old house we notice every creak, every sound. We have no model for these experiences; they defy our understanding, and it is this defiance that makes them so terrifying. We begin to wonder what is happening, when it will end, how much we can bear. We struggle to describe and our medics struggle to understand – especially with a disease like MS where there are often so many things going awry, so many strange, frightening, painful experiences rampaging through our bodies on the tracks of our central nervous system.  We struggle to cope with the bodily equivalent of a massive denial of service attack on our “server”.

Our language of illness is heavily biased towards its impact on this other life. Here in the UK the health service even bases its funding decision making on the idea of “quality of life” (QALY) – a measure predominately concerned to quantify the social, economic, emotional impacts of disease and the abilities  (and hence economic value) of various treatments to improve these. The QALY model of illness is one in which the idealised healthy self is that against which all else is judged. Which seems strange in the case of chronic and / or progressive conditions. Wouldn’t it be better to anchor our understanding of quality of life more realistically, against what can be reasonably expected rather than the fantasy of a perfectly healthy life? I can see why the medical profession went down this route, after all medicine is primarily the story of the hero returning the victim to the perfect healthy state. But the economists, the politicians, the patients, don’t we see things differently? Don’t we all know that the story is really about making the best out of the situation, not the best in some fantasy perfect world?  Well, apparently not if my experience is anything to go by. No, the problem is I still believe in the fantasy perfectly healthy self – autonomous, able, independent, free. I simply cannot accept the idea that I should ‘settle’ for less (even though of course it comes to us all sooner or later). Yet in refusing to adapt, to discard the fantasy that our culture and the media so heavily promote, I am making life harder for myself. I just hope that the boring middle in this journey gives me enough time and space to begin to really wrap my head around this new idea, the disabled me.

I remember long car journeys as a child and how much I enjoyed them once I stopped fighting the idea of having to be on them. Staring out the window marvelling as the world went by, piecing together the rules from the snatches of other people’s lives flashing by my window. I learnt so much. Perhaps in that memory is the answer. Perhaps if I can be observant about what is happening to me bodily, I might find a way to learn how to be like this, I might figure out the rules. So, here’s hoping this next rather boring bit of my journey is as instructive as those journeys of my childhood. At least this time I can pick the music, my dad’s 8-track Glen Campbell album did rather grate on my nerves. So I pick this: