We met in Waterstones’ cafe, and I didn’t feel nervous going to meet her, we had spoken on the phone and her down-to-earth kindness was evident in her voice, her demeanour, as well as her words. She had mentioned some of the therapies she offered on the phone, and I looked on her website too, noting my response to them: I immediately start to evaluate things depending on whether ‘I can/can’t do that with my arm’.
Despite pain not being my (self defined) worst symptom, I’m not terribly keen on the type I inflict on myself by using my arm inappropriately. In this context, that might mean carrying anything heavier than a loaf of bread, moving it quickly upwards or outwards, keeping it in an awkward position for too long, or, indeed, typing too much. I’m not afraid of the pain, I have a high threshold and tolerance level. It’s the pointlessness of it I think I resent; the pain of a broken bone or pulled muscle means damage and subsequently repair, whereas my pain is just meaningless. There is no damage, and this is good, but consequently neither is there hope of repair. It’s pain for nothing, I think I fear that. Moreover, pain is only one aspect of a flare. The whole upper left flank of my body is affected in different ways, from the underside of my jawbone down to my fingertips. There is numbness, tingling, little electric sparks, an insistent tug as if I have a length of too-tight elastic running from the side of my head down the arm. My body wants to curl into it, and sometimes, on my bed days, I do, but always for carefully measured stretches of time so that I don’t sit too long – I fear muscles wasting, drying out, setting, turning the left side of my body into a deadhead, never to bloom again. Numbness runs down the side of my neck, which it makes breathing odd – not difficult, just odd, because I can’t feel the flesh yet I’m aware of something moving up and down, side to side as the breath comes and goes. It spreads across my breast- and collarbone, and it’s this sensation that often makes me nauseous.
When I meet her, I explain all this, along with the swiftness of muscle fatiguing and spasms, the dizziness, the generalised ‘malaise’, a word that lots of chronically ill people don’t like, but I do. It suggests to me a gentle drifting, a state of mild confusion, a struggle to understand the world as a whole as the days coast by, a vacant gazing at what was once familiar, scrabbling for meaning. That’s me, now. We exchange personal stories for an hour or so, she tells me her journey through and with the illness so far. I describe mine. The past is dealt with quite rapidly, and soon we’re talking about the now, how to deal with this thing right now. She tells me there comes a point where the illness slots into place, it becomes a given, something you live with – NOT despite of. It’s this switch from active resistance to acceptance that is the key. I don’t think you can make that happen, I suspect, as with all forms of grief, it is a matter of permitting time and your mind to work their magic. I also recall many, many meditation sessions on very rough symptomatic days which not only ended, but increasingly also began from a place of calm and clarity.
We talk about the danger of the social tendency to applaud ‘the fight’ against all sorts of diseases, that acceptance is often seen as being weak because you’ve given in. You’ve let it win. But that’s not how she sees it, there is no battle, there is no war. There’s no victory or defeat here, just facts. It’s as if, she says, you’ve been assigned your own personal elephant. But you speak to the elephant, never make eye contact, never even acknowledge him there. You traipse through every room in your house, never glancing at the dirty great elephant that follows you around and plonks itself on the sofa, slinging its trunk over its shoulder as it sips a latte and sighs. You talk around it. I think you can talk around it, even while talking about it. You think you’re talking directly, honestly, but actually you’re just ignoring the reality, you don’t really believe it’s happening. The moment the mind says to the elephant “oh, you’re here”, that moment is absolutely critical. That’s when healing – which I think is different from recovery – can begin.
We go on to talk about the specifics of therapy. The one recommendation she can’t praise highly enough is yoga. Yoga is a must. She’s not keen on mindfulness out of personal preference, but yoga is the body in meditation anyway. I agree to explore the possibility of a class. It makes sense to me, here, now, that I need to focus some energy on finding workable yoga. She talks about massage. I am very squeamish about touch, even from friends, and sometimes lovers, but she can do massage that bypasses the trunk of the body and I think I can manage that. However, she made a critical point, which I hadn’t really thought of before, which is that she would not massage, for example, my whole arm in a session. She will proceed with great caution, perhaps working on my hand one day, my lower arm another. You must be conscious, she says, that every time you massage, you’re manipulating, churning the system beneath the skin; the straggles and mass of flesh, muscle, humors, and, most importantly for us, nerves. She will need to be very careful to introduce this gently, tenderly, to avoid triggering a reaction from the nervous system. Don’t poke an elephant. It’ll flatten you with one almighty kick.
There is talk of practical, organisational tips that help her/may help me function in day to day life. She shows me her rucksack, a bag which took a fair bit of time to find, as she sought one that met all her requirements. It is immaculately organised inside, notepads, a pencil case, along with the Stuff Most Women Carry – tissues, purse, lotions and so on. This, she advised, was really fundamental. Everything in the bag has a purpose, and everything in the bag enabled her to live her life comfortably and without fear of forgetting things, confident that she won’t be compromised while out and about. I need a new bag. Another new bag. I feel less guilty about buying yet another, as I’m obviously going to take a while to find the one that fits my unique needs. I’ve seen one already online….
Included is an A5 sized ring binder and this is her personal Bible. She took a long time experimenting with different styles of pad. Everything she needs to write down, everything, goes into this binder. There is plain paper, lined paper, paper marked with grids, and as she flicks I notice a rainbow of inking. I tell her I have been trying to whittle my pads down to just three or four, for discrete purposes – no, she argues, use one with sections. She’s right, of course she is. All this time, I have struggled and struggled to keep track of things – I end up with a heap of loose papers, notes scribbled on receipts, a journal, a writing notepad for out and about, a writing notepad for inside, a notepad for writing down what I have to do, day to day. One notepad, with four sections – preferably similar to hers, a ring binder so that it can be added to, or pages taken out – suddenly makes blindingly obvious sense. I think I will still use my bullet journal separately as I’ve been maintaining it since the start of the year, and it’s more personal. I may change my mind, but for now I can aim to cut my use of notepads down to a very manageable two.
Finally, we talk of what happens next. Of all the therapies, reiki is the one we are going to work with first of all. She is qualified to train me to Level 1. She wants me to go and read a little around the subject, and when I’m ready, we’ll meet again. However, we will meet, she states, as friends. For the time being at least, she will not take money for treating and teaching me. This is, she says, a way of paying it forward, in gratitude for the radical changes the therapies have wrought in her own mind and life. Whatever works for me – some might, some might not, perhaps all will, or none at all – will help me decide the next step in my route. I find my eyes swimming with tears – why do I cry when people are kind to me?!
If she hadn’t gone along to the breath works event – and she nearly didn’t, her husband dragged her along – she wouldn’t have met my friend J, and then, via his mediation, me. The universe has aligned, I guess. I have a feeling that, despite this year being physically very challenging, it’s also been a year of moving forward, at my own pace, and largely through the use of meditation. I’m ready now to start to build a simple structure, insofar as I can establish one given the active fluctuations in my physical state day to day, a frame within which to function. As I start to back away from pharmaceutical interventions, I might learn some techniques that I can take into the home with me. That they are drawing from the traditions of yoga, reiki, massage, a holistic synthesis of mind/body approaches, that’s all to the good. I need to be able to take care of my body within the confines of my bed and my head, as much as (possibly more so, in reality) I need to be able to function outside the house.
The fight is over, and it is neither victory or loss because it never was a fight. An elephant has come to live with me, and I might as well make pals with him, he’s not going away. He’s not in charge though, any more than I am. We are travelling companions, but I decide where to go next. I just have to take him along with me, and that means accommodating his needs compassionately. The kinder I am towards him, the better my life will be. I am beginning to redraw the contours of my life with an elephant. Now there’s a sentence I never thought I would write.