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Living presently: the best laid plans are not the point.

But Mousie, thou art no thy-lane,
In proving foresight may be vain:
The best laid schemes o’ Mice an’ Men
Gang aft agley,
An’ lea’e us nought but grief an’ pain,
For promis’d joy!

Still, thou art blest, compar’d wi’ me!
The present only toucheth thee:
But Och! I backward cast my e’e,
On prospects drear!
An’ forward tho’ I canna see,
I guess an’ fear!

– Robert Burns, To a Mouse

It’s not the kind of thing most of us want to hear – that our illnesses bring gifts with their trials and tribulations. But it’s none the less true for all that. A much looked forward to week off, full of plans, is upended, my best laid schemes did indeed gang agley.

In retrospect I could have anticipated this; July and August have a long history of challenge for me, and a holiday is always a trigger. What has been ignored or saved up suddenly finding its release valve. It’s when I first noticed the early symptoms of MS. When the optic neuritis that would herald the start of this phase of life was diagnosed and when most of my biggest relapses have flared. So instead of schemes unfolding I have been in bed once again, an infection causing symptoms to flare and overwhelming fatigue to kick in. Truth be told I’d noticed it creeping in a few days earlier but playing at the edge of the cliff is a hobby I have had since childhood.

At this cliff edge though I struggle – knowing I should rearrange plans, unable to take the decision to do so, hoping that in wilful ignorance I might find bliss. Dancing with fate increasingly furiously, I hope that I can stay on the right side of the edge. But as I start to slip over I know it’s time to concentrate on landing well. In the past I’d have danced all the way down but I’m much better at this now. When it becomes irrefutable that I’ve flared again I quickly accept it’s time to stop. Attend to what it is wrong now. Banish worries about what has changed or what this might mean about the future. Concentrate on the present.

You see the real point of To a Mouse is not its best known soundbite, that plans often go wrong, but that the mouse copes with these so much better than Burns precisely because it has no sense of past or future. It lives only in the present. It’s not the schemes going awry that cause us pain and grief – it’s the thought of what might have been, the pain of remembering what has been lost, and the fear of what might yet happen.

Multiple Sclerosis – the disease of many scars on the brain – might also be the disease of existential angst. It traps us, if we let it, between all that we have lost and all that we might still lose. It keeps us permanently teetering on the edge of the cliff. Like a cat playing with a mouse it taunts us with the prospect of relapses and losses that may or may not hit at any time. There can be no future plans without accepting that they may well gang aft agley. No coping without accepting that life in the present is what matters when MS dances you over the edge. Listening to the body, to the mood, to feelings. Accepting the stillness and quietness of these times. Will it be hours, days, weeks before the fatigue lifts, the muscles begin to work more normally again? That doesn’t matter. Thinking about that will not help, twenty plus years with MS has taught me that.

What has been has been, what will be will be. What is, is what must be dealt with. The recovery plan is put into action: call off engagements, warn the family, make sure pills and books and crosswords are by the bed. Fire up the radio. Most importantly – the baby steps journal is brought out. Experience has taught me how important it is to focus on recognising and revelling in the small triumphs – ‘got up and showered’, ‘spent time in the garden’, ‘brushed teeth’ in the early stages moving on to ‘got dressed’, ‘played with the dog’, ‘wrote a letter’ as things improve. Over  the years those patterns have proved the only certainty in the land of radical uncertainty that is MS. Each day will have some small triumph, and as the entries increase the return to something more ‘normal’ emerges. This time the cliff was not too high: the dance lasted days and not weeks or months, the landing was soft and my baby steps journal is daily full already of the small present moments that are the real stuff of life. This has been a good fall, a smooth recovery.

Over the years MS has taught me that whilst past and future consume so much of our energies, so dominate our thinking, it’s in the present that life is found. In the daily round of moving, talking, watching, listening, tasting, smelling, feeling. From those moment by moment building blocks life is built – interactions made, plans enacted, feelings founded, thoughts explored. Life is made in the absorbing of what the world puts in our midst, not in the regretting of what it doesn’t or the anticipation of what it might.  When I am at the bottom of the cliff the way back up will be so much harder if I spend time on those enemies of living presently.

But of course, like Burns, I can’t escape the siren call of past and future thinking for ever. Already they are creeping back in. But my baby steps journal is there as a constant reminder that the solution to plans going awry lies in radical attention to the now, something MS (amongst others things) has helped me become much better at. After all, lessons in living presently are an appropriate gift from something that steals one’s past and future. That plans will go awry is just a given, no matter who you are. But when they do, Burns’ mouse has much to teach us about how to cope.

 

 

Holding On

A little warning for folks with MS who may have found this blog….
I use this place as a way of working out and dealing with my feelings and experiences, of sharing them into the void of the internet as a way of telling myself what I have felt and known, as I find that helpful in coping. Sometimes that means I am writing about things that might upset someone with MS who has not had the same experiences, or is earlier in their journey (I was diagnosed in 1994). This is probably one of those posts as it deals with spasms in my throat and oesophagus. So perhaps you might not want to read. Or if you do bear in mind that whilst they are frightening they are not much more serious than spasms anyplace else, they just feel a lot worse, and can be emotionally trickier to deal with (which is what the post is really about). 


It starts slowly. At first a sense of tightening around the upper body and neck. Small jerks and ticks disturb sleep. I know what it means, I know what’s coming. I just don’t know when, or how hard it will be to ride it out. Or how I will react.

That’s the strangest thing – not the spasms, ticks, and pain that will once again intrude into my studiously “normal” life (for it is an effort to be normal when your body and brain no longer act reliably). No it’s my reaction that seems the least controllable thing of all. My reaction, the one thing in all of this one would imagine is most within my control, becomes the thing to fear more than any other.

Sometimes I can breeze through the period when my body and brain are doing their very best to disrupt my vain belief that my days, my hours, are things that I control, experiences that I can shape. Because of course what we can control is like a microbe on the skin of some unbelievably large sea monster of old. That’s why we shout and dream and make so much of ourselves. Because when all is said and done there is so little within our reach, at our behest. Even life itself – its beginning and its eruption into the light – are nothing to do with us. We are unceremoniously dumped into this world no matter how inconvenient to those whose care and kindness we will rely on so much. And from that moment onwards our lives are a constant battle against the external forces that shape and mould, drive and dictate our fate. A constant attempt to shore up a fantasy that we can change things, that we can control this. More than anything that is what I fear when the throat spasms begin.

It starts elsewhere; the tightening, the ticks and jerks, creeping up my body from my lower torso, sometimes quickly sometimes slowly until they are at my neck. Like a ghoul’s hand in a film by FW Murnau, it reaches around my throat and tells me to be afraid, it reminds me I am not the mistress of very much when it comes to my destiny. Without notice, without cause, suddenly the grip on my throat becomes a grip inside it. A little vice inside my throat begins to gently but ever more firmly squeeze my larynx. A warm grip that gradually moves down, right inside my throat, as if to try and reach the tightness that already has control of my upper torso. And then like a sudden slap it takes ownership. It’s as if a hard rubber ball has suddenly been forced into my throat. I can still breath through my nose – it’s my oesphagus not windpipe that is being most affected – but that can be hard to remember as the pain can be so intense it can bring me to my knees. I focus on breathing to control the panic that a feeling like that can bring.

I know now the pain of the big spasm will ease fairly quickly, a couple of minutes usually.  As it does it descends – it’s as if something is tugging the top part of my throat from the inside, pulling it down. Sometimes I automatically find my head stretching back for relief. It works for those moments, but as I lower my head to its normal position the by now ache, not unlike the ache after a huge cramp in the leg has seized one, resumes its place in my psyche,more pressing than the physical sensations. The discomfort in neck, throat and chest now aching as if I’d been in some accident in a car and the seat belt had damaged me. The slightly shallowed breathing, the croaky voice, the awkward swallowing as saliva no longer makes its way naturally down my gullet. They are all just markers for the disturbance inside my head.

Breathing. Swallowing. After the heart beat, the most central, most immediate, markers of our sense of being, of safety. When we lose these sensations, or they are altered, it’s as if we have been dumped in a terrifying forest alone at night. We, no, I – I am a scared child suddenly reminded that I don’t know what to do, I don’t how to get home, and I can hear scary things in the darkness. There are voices out there whispering that this is so short, this time here. That there is so little of this precious life, and so little we can do really to substantially alter its course. Like sirens I can’t ignore their voices as they whisper that one day the grip will not relax, there will be no more breathing, no more dreaming, no more love, no more music, no more sky.

In the early days of MS I spent so much energy trying not to think of, look into, that inevitability. But now it’s impossible to avoid. A cramp in a leg, or a patch of numbness, a touch of vertigo, those were easy enough to accommodate within the fantasy of self-determination and eternal life we are encouraged from our earliest days to embrace. The growing balance problems, weakness and pain perhaps a little more challenging, but still bendable on the anvil of illusion upon which we carefully hammer out our lives. But not breathing, not swallowing. That really is too close to heart of the matter to ignore.

As it builds, so to does the fear, and the sadness, and the sense of loss to come (somehow almost harder to deal with than loss that has already happened). And now there is only one way out of the forest – a tiny little thread of hope that was left there the last time I was here. I pick up the end and hold on. We don’t need to be in control. We don’t need to be the mistresses and masters of all that we survey. We can’t be. Be we can hold on to hope. Hold on and edge slowly forward. Because the night will pass, and the forest will gradually thin and open up, and the ache will ease, and the fear will recede. It may be hours, or days, or weeks, but it will recede. And the more often I go through this the stronger my belief in hope, my faith that it will ease, becomes. And when it eases life, and love, and dreams, and music, and sky will still be there. But more beautiful, somehow, for all that fear. The reward for holding on to that thread in the forest.

We stumble and fall, in the fullness of time.

It’s been a year. I can’t believe it, but it has. A year since my biggest MS “crisis” in the 20 years + it has been my companion in this life. A year since I knew that everything was changing, but did not yet know how. I still don’t, not with any clarity, but the foreshadowing of it is swirling around me like early morning mist in a valley; unformed, indistinct, elusive and yet present, noticeable. It would be so easy to look back with regret and bitterness – what could I have done differently, why did I not see it coming, why did I not heed the warning signs? It would be so easy to be angry – why me? It would be so easy to be sad – what have I lost, what have my children lost? And, I always suspected, it would be so easy to be frightened when that moment came. MS is a mistress of the unsettling – “I might, I might not. I might put you in wheelchair today, or tomorrow. But I might not. And if I do, I might let you out. Though I might not. I might rob you of your breath, I might not. I might be around the corner, and I might not. Live with it. Or not.” I had my moments of fear, of course, but when it came to it there was a calmness and peace I hadn’t expected. Realising the fall is coming is much more frightening than the fall itself. Perhaps it was because once falling, the respite from trying not to fall provided space and the energy for something else. Somehow in the midst of last year, and the months since, change has taken root. Still quite fragile, a lot of nurturing and growing still to come yes. But it has taken root and the first tentative tendrils are poking the heads above the soil.

I’ve been drowning in the sounds of Maya Angelou these last few days, her death last week another reminder that our mothers and fathers are leaving us, that generation that grew up with the fears and hopes of the Cold War, apartheid, class war, race war. Her words and her voice stay with us thankfully; a reminder that we do in fact have all we need to flourish and that (when) we don’t flourish it is a by-product not of ignorance but of fear. The fear that quiets the voice inside shocked by some act of cruelty or evidence of inequality in the world around us. The fear that averts our eyes when we see others in pain but worry about the consequences of helping. The fear that tells us walk away when our humanity tells us reach out. The fear that tells us stay still when our heart screams move on. So often in her writing she talks of stumbling, falling, and rising. As I grow older I find such strength in her words. Unlike Nietzsche’s bleak invective ‘what doesn’t kill you makes you stronger’ in Angelou there is an indomitability of spirit, a constant drive onwards, through, up. The fates can, do, throw much at us. And we will stumble, and we will fall, under the weight of all that. But we rise. Somehow we rise.

Still I Rise, by Maya Angelou

You may write me down in history
With your bitter, twisted lies,
You may tread me in the very dirt
But still, like dust, I’ll rise.

Does my sassiness upset you?
Why are you beset with gloom?
‘Cause I walk like I’ve got oil wells
Pumping in my living room.

Just like moons and like suns,
With the certainty of tides,
Just like hopes springing high,
Still I’ll rise.

Did you want to see me broken?
Bowed head and lowered eyes?
Shoulders falling down like teardrops.
Weakened by my soulful cries.

Does my haughtiness offend you?
Don’t you take it awful hard
‘Cause I laugh like I’ve got gold mines
Diggin’ in my own back yard.

You may shoot me with your words,
You may cut me with your eyes,
You may kill me with your hatefulness,
But still, like air, I’ll rise.

Does my sexiness upset you?
Does it come as a surprise
That I dance like I’ve got diamonds
At the meeting of my thighs?

Out of the huts of history’s shame
I rise
Up from a past that’s rooted in pain
I rise
I’m a black ocean, leaping and wide,
Welling and swelling I bear in the tide.
Leaving behind nights of terror and fear
I rise
Into a daybreak that’s wondrously clear
I rise
Bringing the gifts that my ancestors gave,
I am the dream and the hope of the slave.
I rise
I rise
I rise.

It’s an appealing image for someone for whom stumbling and falling is not just a metaphor but a frequent reality. A reluctant left leg combined with damaged sensory and balance systems conspire to have me stumbling and falling on a regular basis. Lately I’ve noticed something rather odd – I don’t panic anymore. In the days before MS if I stumbled or fell I could often right myself or at least correct myself on the way down to minimise the damage. But I no longer have the capacity to do that. If I stumble there is less chance I can prevent myself from actually falling, and if I fall there is less chance I can prepare to land as best I can. Luck, or a nearby wall or person is necessary to stop a stumble becoming a fall. Once I am falling, then I can do nothing but wait to land and hope the positions of limbs and head are favourable for minimal injury, my laggard nerve signalling ensures no response will be quick enough to be of use. I used to find that sensation horrifying. Falling is bad enough but falling without an ability to prepare for landing is worse still. Of late I have realised that I am quite consciously “ok with it” when I do stumble or fall. I accept now I can’t control what will happen, and during that second or so of, and those seconds after, a fall I feel only curiousity and a little anticipation. And hope, a lot of hope. Which is rather how I feel now, having decided to leave my job for an uncertain future I feel only curiosity, and a little anticipation, and a lot of hope. Because of course hope is just another way of saying “And Still I Rise”.

Hope is born of us alone, but hope can be nurtured by others if we ask. This last year I’ve been so blessed by others – friends, family, loved ones and comparative strangers have encouraged, supported and shared so much with me. Perhaps I am more open to that now, certainly I am more open about my experiences. A year ago I wrote:

I paused before doing this of course – in the age of the confessional some things even now feel ‘close to the bone’. And yet… We wander through our lives as parent, friend (and ‘Friend’), child, co-worker (rant aside: I hate that word “colleague” – is it so much better to be a colleague than a co-worker, do we so despise the idea that we must be workers at least some of the time?), and lover. Along the way we reveal so little of our real lives, of our truly important experiences. We are happy to share titbits from our exciting holidays, or news of some of the day’s minor adventures or frustrations. But for the really big stuff, we are rarely happy to let it all out in anything more than a nod or an oblique aside. But…

 

I am so glad I only hesitated. If there is one thing I have learnt it is that my instinct to share my experiences, to write, was necessary if I was to rise. The writing has been for me, it always has been how I organise my thoughts, but the happy by-product has been finding others by being heard.

It’s been a year and in the fullness of that time, the richness of that time, I have gained much more than I have lost. Change is afoot, and magic is alive. 

Faith in Pharmaceuticals

Drugs. Once alluring, exciting, a bit frightening. Shall I try this, that? What will it be like? Will I get caught? Will I get ill? Experimenting a little, learning that you are not the bohemian adventurer you once imagined and that “a bit grey” is as far into the dark side as you are likely to get.

The next thing you know, you have two babies under three and a full-time job and the nearest you get to the world of ingesting chemicals is when exhaustion drives you to experiment with the slightly funky left-overs in the fridge (because of course all “good food” has already gone to the kids and you can’t drag yourself to the shops for something a little less dodgy to eat).

And then one day you are sitting with a pile of research papers in front of you trying to decide if feeling constantly like you have the flu, a good chance of suicidal ideation, etc. are acceptable compromises for the potential benefits of DMDs (disease modifying drugs used in treating relapsing-remitting MS in the hope they will slightly slow the progression of damage the disease inflicts with every relapse). You conclude… no. For you, no. The data seems unconvincing to someone whose disease progression has been manageable. A slight slowing but no real long term change to the course of the disease? No. The risks seemed too great to someone with two kids to raise, a primary breadwinner with a family that needs her to stay that way for a good many more years.

Time passes, symptoms become more difficult to deal with. DMDs have been dismissed but there are symptom relief drugs on offer that might help with coping with the spasms that beset you now – exhausting you and stealing precious sleep that the growing babies have only just gifted back to you. You dabble – feeling like a teenager in a club being offered something illicit. And as before, you learn that you are just not one of those people that can cope. Within a few weeks you are a zombie, and you know it’s time to give up with the experiment when you realise that not only have you zoned out in a meeting at work for god knows how long, but that you are actually dribbling.

More time, more progression, more challenges. You try diving in to the pharmacopeia once more. You haul yourself out of the pool dripping and disappointed yet again. A mixture of Prussian, Polish and Scottish/Scandinavian stock has gifted you a body oddly suited to “toughing it out” and completely unsuited to coping with pharmaceutical visitors in your central nervous system no matter how well-intentioned they are.

Again now I sit with a new drug in hand, reading the terrifying side effects leaflet, wondering if the risk is worth the possible relief from the throat and trunk spasms that have recently caused not just pain but frightening bouts of night-time choking and breathing disturbance that steal both sleep and sense of safety. I am willing to give it a try, but also ready for it to fail. My lack of faith in pharmaceuticals has encouraged me to commit heavily to mindfulness and meditation as a way of coping with this. Medical science has yet to offer me much by way of relief, let alone cure. But medics, specifically the specialist MS clinic nurse at my local hospital, have gently supported and encouraged me as I learn anew each time that I am the best medicine in this situation. The strength I need is not physical, it’s emotional. I need to have faith that I can cope, with anything that is thrown my way. I need to have faith that whilst it is painful and unpleasant this will not be worst than I can bear, that I can take more.

My dis-ease is not “in my mind” as some would have; it cannot be cured by force of will. I do not believe that faith (of any kind) can “cure me”. I understand that there are observable processes underway in my brain that are having a domino effect throughout my body. But I am no crude determinist either – those processes alone are not the sole determinants of their physical, still less their emotional, impacts on this thing I call “me”. The medical profession is rooted in the idea of caring for the other. But I think what chronic illness teaches us is that caring for self is so much more important. When the system fails us – as it does in MS, where it has no cure and few effects symptom management offerings – we patients need to focus much more on self as the ultimate pharmaceutical when it comes to symptom management. There is, it seems to me, too much emphasis on “self-healing” and not enough on “self-caring”. I don’t believe I can will MS away. But I do believe I can help myself a great deal more, have faith in my ability to self-care, to self-support.

Slowly but surely I am learning to turn the caring and nurturing instinct I have always felt for others on to myself. I recall once as a child sitting on a bus in Glasgow suddenly bursting into tears at the sight of a bent double old lady struggling to carry her shopping along the road whilst fighting a fierce Glasgow winter rainstorm. I wanted to be able to make it better for her. Now I am learning to feel about myself the way I felt about her; I am learning to care about my own suffering. Just a year ago I think I would have struggled to even name it, still less imagine that it was worthy of care.

So I pop my new drug, conscious that history would suggest this experiment will be short-lived and unsuccessful, hopeful it might break the pattern. But mainly, I give myself a warm hug and whisper “You’re doing great, hang in there, you’ll get through it.” I actively nourish myself nowadays: writing like this, meditating, and demanding of my world that I get the peace, calm, rest that I need – these are my internally generated pharmaceuticals. Pharmaceuticals cannot save us, at best they can ease the journey. But we know instinctively to offer care, and love, to those around us we see suffering. We know that when all else fails, that is the most important thing we can do. We, I, just need to remember to do that for ourselves too. I don’t where I learned not to do that, where I learned to care for others more than for myself. Perhaps some old Stoical sense that “suffering is good for us”. Or some ancestral Protestant instinct towards self-denial. But I did learn it, and un-learning it has not been easy. As I look back through this blog, I see myself learning to care of myself, learning to feel deserving of my care, learning to see the value in all of that.

I pop my new pill, hoping the side effects will be limited, hoping the effects will be good. But knowing that if they aren’t, I still have me. The tightness and tension in my throat nudges at my fear, goads me – “This is your future, I will steal your ability to breathe, this is how you will die frightened creature.” And maybe it is, but I am not afraid any more of this. I don’t seek it, but I won’t cower in its shadow or hide myself away from life for fear of it. I have no faith in pharmaceuticals, but I have great, enormous, glittering piles of faith in me. And that is worth a great deal more than any drug.

So….? (or, Here we go again. Perhaps.)

Well after If…. and But… “So” feels like a good, if unexpected and unwished for, next act. (If you have landed on this blog searching for stuff about MS an important note:  The MS bits of this blog are really written only for me as a kind of MS from the front lines report I use to capture and reflect on what it is like to live with this. If you have MS and are looking for reliable information, scant on the web I know, this is not where you will find it!).

It’s 3am in Tayport. Not as sexy sounding as 3am in Amsterdam but then Michelle Shocked went a bit funny anyway so perhaps the less said about that the better. It’s 9 months since my “big relapse(s)” and though I had been hoping this might not happen again for a long time, it appears something is brewing again. I’m up because I woke up with the giant’s hands pressing and twisting my trunk and throat, my legs and left arms misshapen by powerful muscle spasms, and choking on my own saliva and gasping for breath. I’m up. And fine. If irritatingly wide awake. And it feels rather amazing to say that – “and fine” – since the last time this happened I was completely freaked out. Of course back then it happened some way in to a very big relapse that had already reduced me to someone who could barely walk. But still, it’s nice so I’ll say it again: I’m fine. Not worry free – that would be foolhardy. Not being able to count on your body managing to breath properly while you sleep puts a kink in your plans for a restful night. But not overwhelmed by that fear, and able to think about what is happening calmly and rationally – with a clear mental picture of what is happening and why.

It’s interesting how different I feel this time round. Last time I had never had a really acute relapse – one that just floored me (literally on several occasions) for months. Perhaps because I had lived with MS for so long on a kind of steady but slow decline path with flares that were by and large reasonably manageable I was not ready for that and in retrospect I had been really scared of it too. This time as the MS storm starts stirring up the seas around me, I’m nowhere near as in denial or fearful. It almost feels like a challenge I welcome, to see how well I can ride it out. After last summer I have also committed a lot more time and energy to my mindfulness and meditation habit and that seems to be helping with coping too.

The trouble of course with MS is you don’t really know if a flare up is a “relapse” (technically when you get an increase in symptom level that occurs without any underlying infection, which can stir things up but doesn’t indicate any further damage to the brain). And either way as it starts you don’t know how far it’s going to go. Will you be able to carry on reasonably normally or will it floor you? Will there be something new to contend with? And most pertinently of all for me right now – will it mess up your carefully laid plans for the next few weeks/months? I have a busy teaching and project period ahead at work, and a much longed for birthday treat trip to the opera in Zurich (I had to cancel my summer Zurich trip, I’ll be damned if I cancel this one). I am curious to see how much I can balance life (going a bit off the rails) with work and life (joy).

I felt something brewing last month. Subtle things – noticing my computer game performances were getting even worse than usual, a new very slight tremor in my right hand I hadn’t noticed before and which I picked up on when taking photos with my iPhone because they kept blurring due to shake (technology is becoming an interesting tool for tracking symptoms). My fatigue has been getting a bit worse than normal and I’ve had to up the dose of my Modafinil (an anti-fatigue medication I have been on for several years). I hoped it wasn’t something of course, but felt  kind of ok entertaining the idea it might be. Then last week the stiffness and spasticity upped a gear and it became clear the game was on: the message rammed home when I felt my voice weakening again, and, at the weekend, the trunk and throat spasms were back.

Coincidentally I had a scheduled check up at the MS clinic at the hospital (a life-saving service which I hope will always be available!) on Friday anyway and found myself talking quite casually, for the first time, about my suspicions that something might be brewing. In the past I would have minimised or glossed over something like this, this time I was happy to talk openly about my suspicion (not fear) that something might be brewing. We talked about controlling spasms – my problem has been that I do not do well on the medications available for that, in fact on the two drugs I have tried I basically went gaga, and not in a Lady way. But as the big problem is the trunk and throat spasms, which are a particular kind of spasm called tonic spasms, and as some of my other symptoms are related to seizures, we discussed trying one of the anti-epilepsy medications that is used also (at a much lower dose) for MS. So I’ll be giving that a cautious whirl I think. And the clinic also offer an acupuncture service to people with MS so I’ll be giving that a whirl too, on the grounds that unlike the meds at least that can’t do any damage. But mainly this time I’ll be using fatigue management, mindfulness and relaxation and a good dose of self talk to see how well I can manage.

Oh, and I’ll be using hope.. hope that the fates let me off with a light one this time. I do not believe that illness is all in the mind (mine in the brain maybe but not the mind). There is a disease course at play here I cannot fundamentally change – scars in my brain are inflamed, signals are going astray – but I can certainly manage how it impacts me and I can ensure I do everything I can to minimise, or at least not aggravate, it. Hope is the big change this time. Not blind faith, but quiet hope.  Hope that I will cope well, and hope that I might be spared too big a storm. When you are in denial you are also in denial of hope since if nothing is wrong why would hope be needed? You have to face the storm head on to have hope. This time I am and I do.

If…

Can you miss what you never had? What would have been? If…

I had her once. Just for a few days. The woman I might have been these last 20 years. I thought I’d forgotten all of that. Life moves on very quickly even after such a long period when things didn’t so much fall as apart as softly unravel like a ball of wool on a half-knitted scarf happened upon by a playful kitten. But today it was there again, this ache for something I never had. I don’t look back over my life with huge regret. Some of course – for the times when I was less honourable, or less courageous, or less fair, than I wished myself to be. But last year I had a little glimpse, for just a few days, when high dose steroids all but removed the traces of MS from by body, of who I would have been without it.

Oh she was glorious. This me without pain. Me able to move freely, even gracefully. Me alert and energetic for the best part of the days I had her. What time I had suddenly – freed of all the effort of thinking constantly about where my limbs are, how to avoid falling, how to manage my limited energies best. My mind bounced about eagerly The days seemed so much lighter, brighter. She danced in the sunlight and lit up my life even though I knew she would be gone soon, and there would be a price to pay. As there was. Is.

She was just a mirage of course – a suggestion of a life that will never be. A remembrance of things wished for but never achieved. But when she came during those glorious days last summer I recognised her immediately. She was the me of my dreams. I thought of her today and realised I haven’t dreamed of her since. I wonder if I ever will again. And I wonder sometimes if she exists in some parallel universe where MS and all the other destroyers of self masquerading as disease have been banished. Maybe there I’d find me. If…

At Home in the Heat of the Moment

As a young woman I suppose I was as prone as the next person to believing that “anything is possible”, that life should be lived with “no limits”. Neither flirtations with Buddhism in my youth nor lifelong deep seated attraction to socialist ideals could seriously dent my underlying belief that “life was for the taking”. Even as I entered the world of design and learned the enormous value of constraints on design, the idea that constraints could be useful for life too never occurred to me. I was fully signed up to the ideology of better living through “more”. What the “more” would be of I didn’t know, just that it would be more, and that more meant better. Life seemed to be an endless journey on the road to more. I jumped enthusiastically on the treadmill. I softened my more of course – no crude Boris Johnson style greed for me. My more was a little more subtle, or at least I like to think it was. More adventure, more “big achievements”, more “pushing myself outside my comfort zone”, more “start-ups”. Somewhere in my youth or childhood I may not have done much good but I did pick up the notion that whilst I would never seek to be part of the establishment, would never seek acceptance, I would seek adventure, novelty, challenge, “authenticity”. I would seek to be better than I was. To be more than I was.

Multiple sclerosis being basically a speeded up version of the decline that time will visit upon all of us sooner or later, I have been blessed with an inbuilt sword of damocles these last years. When it fell this past summer it swept away a great deal. Or perhaps it just cleared the way for the essential me to reclaim her place in my psyche. I’d been so caught in “the world” – in trying to be someone, do things, “make a life” – that I had totally lost sight of what I knew instinctively as a child; that me existed most fully when freed from all of that. When there was nothing to do but lie in the sun and marvel at the feeling of the wind on my skin, or the sound of wood pigeons in the trees, or the feel of my dog’s side as it rose and fell with his breath while I lay resting my head on him. That intensity of simply being was utterly unaffected by all the constraints of childhood. So why is so hard to re-capture it as adults, when apparently we are so unconstrained?

Adapting to the changes my illness and disability have wrought in my life has created such a huge challenge to my sense of self it’s been difficult to even begin to appreciate, let alone engage with it. Returning to work I have had to accept what in fact has been happening for some time –  I simply cannot work at the pace I did, with the intensity I did. I cannot cope with stress beyond a certain quite limited level. My workplace, like most, is a daily round of “better living through more”. Only those who achieve more are deemed to be successful. And only those who are successful are deemed worthy of a story, of attention. One begins to see how the old are air brushed out of life like out of favour comrades in a Soviet era photograph. But it is undeniable that at this point in my life success is not so much a matter of more as of “not less”, or at least “less but not too dramatically so”. Work a little too long, worry a little too much, push a little too hard and my body slips back into “relapse foreshadowing” mode. It did this before, but I didn’t have the fear of relapse I did then. Past relapses were more subtle affairs than this summer’s. Now when those telltale harbingers of future trouble flare up, my fear sends me scurrying to bed.

I look around my workplace and the endless narrative of more, better, onwards, upwards, that we are surrounded with constantly and I know I can no longer engage, no longer be part of that. Truth be told I was never that good at engaging anyway, perhaps luckily for me the need for workplace approval has not been a strong driver. Nevertheless I was bought in to the idea of more. Now there is no “more”. There is simply being and doing. The sadness at the thought of the “upwards” that will not be scaled, the future trajectory that will no longer be explored, is far outweighed however by a sense of something else. A familiarity. As children we have no upwards trajectory despite how often the adult world wants to force one on us. We simply have now. Perhaps that is why all the constraints on us seem so irrelevant most of the time. Adult games invented to annoy us, easily forgotten in the heat of the moment. For in losing the desire for upwards, choices become so much easier to navigate. Like a vegetarian in a French restaurant I am faced now with a very limited menu of life options. I am beginning to feel unwell? Stop. Rest. Stress is beginning to creep up on me? Let it go, fast. I want to devote some precious, finite, energy to something that is not “in my interests”, will not “further my career”? Fine. Go for it. Carpe diem.

Slowly, re-assuringly, it has begun to dawn on me that whilst the air “up there” is thin and cold, here, in the heat of the moment, it feels welcoming and warm. It feels like home.

It’s Time to Take Account

One of the reasons I started blogging instead of writing on my Facebook page about my experience of an acute MS relapse is that I had so many people contacting me wanting to pass my thoughts on to others. At the time I started writing I was writing for me and me alone. It was how I made sense of a challenging time, it still is. But I became aware of a wider world of people my words were rippling out to. I don’t write this for anyone else, it is still just how I work it out. But I am more conscious of the impact on others sometimes. I wrote a post about a very low point (The Wrong Turn) a while back that generated a whole slew of private replies, it had stirred up some quite strong feelings in some people. I ended up writing a coda to it (On the Rocks Again) to try and reinforce that posts are not “the story” I am telling myself, they are merely snapshots of moments in a story that is still unfolding. Each snapshot must be read in that light. Telling myself this story as it unfolds has been hugely powerful and healing for me. But for somebody perhaps dipping in to a single snapshot the “story” is very skewed, and I have become very conscious of this regarding people with recently diagnosed MS in particular finding my words.

My last post was another such “difficult moment” snapshot and again it seems to have resonated with a few folks. I talked last time of the surprising emotional storm that being asked to undertake an annual performance review by my work had created. Having been quite upbeat for a couple of weeks as my physical condition began to  improve enormously and I started a phased return to work that seemed to be going well, I suddenly found myself back in the panicky, anxious, frightened, weepy place I had been for so much of the summer. Being asked to look back over a hard year, and into a future that still seems uncertain and frightening made me realise how vulnerable I still was, how tenuous my remission still feels.

When you are very ill your life becomes very present oriented. It’s one of the up-sides of illness – a chance to free yourself from the constant over-thinking of past and future that modern life seems so hell-bent on keeping us at. The prospect of having to go through this review plunged me back into that place. Quite a few people wrote expressing sympathy and worrying about me, and some talking of their own struggles to stay present in their lives. So I felt like I ought to snapshot my feelings now; having had the benefit of a couple of days to move past that initial panic and having started to unpick some useful threads in my reaction. I see that again I am over-thinking – that my reaction was not so much the fear of looking back or ahead (although those are there) but a rather simpler, more “present fear” in some ways. It just reminded me I am scared of having another relapse. And reminded me of the tension between staying healthy and staying employed. I have not managed that balance well in the past years. I do need to make major changes to how I live my life. Swept back into work it was easy to take my eyes of that very present need. I am not happy with how I manage my work-life balance. I have a pressing need to address this. Which will mean looking at some things in my past or future that I will find really hard to look at, let alone address. But I will have to make myself do it, just as my employer is making me address my past and future work performance.

Looking back over my blog I am reminded of how much I can survive. I see myself as I was then: challenged and sometimes struggling but overall, surviving. Being reflective and imagining my future (whether in the limited sense my employer wants or the wider sense that I know I need to do) will not be easy. But I will manage. Staying present, allowing myself to be scared or vulnerable, writing it out – all these got me through the summer. They will get me through this. At the time my boss told me of this I felt upset that I could be asked to go through this at such a vulnerable personal time, but I am finding a way to make it a positive experience, to make it part of the beginning of healing my “whole being” now that healing the physical part of my being is well underway.

We all have to account for ourselves sooner or later, and the completeness, the breadth and depth, of those accounts will dictate how powerful a force for positive change those accounts will be. Staying present does not mean avoiding the past and the future, but engaging with them only enough to be able to manage the present well. Our past and our future should inform, not drive, our present. For that to happen we do have to engage with them. It’s time to take account.

Surviving Remission: Living in the Present in a World that Lives in the Future, and the Past

As a person with multiple sclerosis that has been for the most part either benign (the early days) or secondary progressive (slow but steady progression of disability) I had until this year largely been spared the physical and emotional challenges of my fellow MSers who have what is called Relapsing – Remitting MS. Ever the iconoclast, I had to go and become that rather rarer beast – a secondary progressive with relapses. So rather late in my life with MS I am discovering the difficulties of dealing with a sudden very large increase in disease symptoms (relapse) followed by a partial recovery (remission).

The physical aspect at its peak was scary, very much so at times. I remember there was a moment when I suddenly felt like I was sliding down a hill and unable to stop. I’d never had that before. Our lives in contemporary Western societies are so much focussed on being independent, in charge, masters of our own destiny that giving up that illusion, accepting something was happening to my body I could not control, was challenging. But getting through that was easy compared with the emotional challenge of “surviving remission”. 

Being in remission for an MSer is of course hugely desirable. The sudden onset of new symptoms recedes, there may be some residual deficits but not anywhere nearly as intense as at the peak of the relapse. So it is with me. Time, rest, great support from clinicians, family and friends, and a great deal of physiotherapy have pushed back much of what previously left me hugely disabled and frightened. But…

I suddenly find myself, now that I am physically improved, an emotional wreck liable to sudden equally overwhelming attacks of fear and distress. I feel fine and then suddenly I am back there, sliding down that hill. Only this time it is in my mind not my reality. And as we all know the mind is a much scarier place. Oddly it’s not the physical remnants of that time that spark it. For example my throat still has occasional spasms if I get tired or have talked too much. Given that swallowing and breathing difficulties were by far and away the most distressing symptoms of my relapse you’d think they would be a great trigger for an emotional spiral. But no. It’s fine. They happen, and thanks to the fantastic speech and swallowing therapist I worked with at that time I have a clear understanding and mental model of what is happening. I know what’s going on and I have good techniques for controlling it. But sitting in the garden in the sunshine can spark it. A piece of music that was on the radio when I was unwell will do it. So many things can send a shiver of anxiety down my spine (if only my actual nerve signals could travel as smoothly down my spinal cord!).

Today, on discovering that I will have to undergo the annual performance appraisal at work I missed as I was off sick, I had a major spiral. My mind almost shut down at the idea of having to look back at a year I would give anything to forget so filled with death and illness and distress was it. I tensed up in the meeting it was raised in, but when I got home and opened up the paperwork it hit me fully. Blunt force trauma to the deep dark recesses of the soul. Tears welled in my eyes as I contemplated the form’s request to state my plans for the year ahead. Will I have a year ahead? What will I be able to achieve?  I’ve been working so hard to cope by living as fully as I can in the present that I forgot the world of work does not think like that. Suddenly my mind races again – can I cope with work really, what happens if I have a relapse like that again, will I ever feel like me again, is my career over? Can I cope? Can I cope?

As the panic swirls around I realise that just as when during the centre of the relapse storm I had a moment of clarity about the real challenge of life (it’s simply to keep breathing!) this panic is not really about work. It’s just that I am afraid of another relapse. So finally I join all the hundreds of thousands of other MSers who live with relapsing-remitting MS. I am lucky that I have had twenty years without this drama, just a mundane chipping away at abilities, slow enough to be largely absorbed into my psyche. Now I must live with the shadow of relapse and the challenge of surviving remission emotionally intact. I will of course. But I think I need a way to balance living in the present with looking into the messy swirl of the future. WB Yeats never seemed more apposite:

I know that I shall meet my fate
Somewhere among the clouds above;
Those that I fight I do not hate,
Those that I guard I do not love;
My country is Kiltartan Cross,
My countrymen Kiltartan’s poor,
No likely end could bring them loss
Or leave them happier than before.
Nor law, nor duty bade me fight,
Nor public men, nor cheering crowds,
A lonely impulse of delight
Drove to this tumult in the clouds;
I balanced all, brought all to mind,
The years to come seemed waste of breath,
A waste of breath the years behind
In balance with this life, this death.

The Ethnographer’s Wall: Recovery as Fieldwork

I spent a morning last week doing a three hour teaching stint in the studio, a pretty strenuous one at that; lots of activity and focus needed. It was the longest stint of teaching, and probably of moving around with little rest time, I have done in 4 months. I was teaching a group of design ethnography and service design masters students an introductory class in observational research. I have taught a variation of this for the last three years and every time I do it it gets more and more stripped down. I talk to them about the challenge of simply resting in one space observing in an era when we are rarely without multiple distractions to hand. I talk to them about the challenge of occupying different points of view on both cartesian space and on human experience. How can we as subjective beings ever truly see the world as other’s see it? Why are so wedded to particular ways of ‘surveying’ the environment around us, or of thinking about people and events as their action unfolds in front of us? I talk to them about the challenge of trying to simply be fully present in the world, and of juggling the need to try and get to that point with the need to ‘deliver findings’ to clients who are usually only dimly aware, if at all, of the weight of debate that surrounds the idea of an ‘ethnographic finding’. Epistemology weighs heavy on the shoulders of ethnographers.

I took my students out of the studio minus all their devices. In the past I did this because I didn’t want them to be distracted, now I do it also because these devices are so much part of our identity that leaving them behind can be a very useful ritualistic nod towards ‘attempting to cast off self’ – a useful thing to do if you are an ethnographer entering the field. I sat them on the steps between the 6th and 7th floor of the art college I work in, and asked them simply to look out the window. This bit only lasts around 20 minutes, but it is always fascinating to see how people react, and think about how we take in the world habitually and how we might change that for the purposes of ethnographic exploration. There seem to be three basic reactions. Some become very focussed on me – I ask them to look out the window as I talk – their eyes flit back and forward constantly as if hoping that I will make sense of what I am sure must feel quite an odd and perhaps unexpected moment. Some become very focussed on the scene ahead, eyes variously flitting around and then stilling intently on one spot. And some manage just a few moments before they clearly become uncomfortable or bored or irritated.

Pushing them through this is important, we rarely in our everyday worlds just ‘take the world in’ – even when we are absorbing some beautiful scene we tend to observe only ‘that scene’ not everything else around it. As an ethnographer I need to be able to flit between scenes, between scene and context, between environment and events. This kind of observation requires a strategy, but there is no one size fits all strategy as we all observe the world differently. Quite how differently I was unaware of until I started to teach this class. Some people take in the world instinctively as a set of shapes to scan, some are heavily drawn to people, some to the near field first, some further afield. Some scan quickly, some slowly. Most never look up (my youthful love of illicit rooftop exploring taught me that very early). But we all, in our instinctive selves, have a tendency to give up trying to see the world differently very quickly. Of course there are good evolutionary reasons for this – too much time engaging with the world might blunt other useful cognitive processes – such as “oh my god a lion, run away!”. This facility to give up observing quickly is what an ethnographer has to fight. There is a kind of ethnographer’s equivalent to the runner’s pain wall to be crossed – the fear of coming up empty handed wall. I’ve come to love that wall.

There is always a moment in the field, even in the most interesting project, when the mind starts to worry away at the thought that your research is a monumental waste of time and you will never find anything ‘interesting’. The wall is particularly present in purely “observational” sessions when you don’t have the focus of a human being you are interviewing to distract you from what you are experiencing. Most ethnographers are intensely interested in other people’s lives, and interviews are driven as much by the interviewee as us. They are rarely dull or boring. It’s often only after the field visit that we begin to worry that our interview is throwing up nothing. But in observational research only we are driving, and though we are usually observing people acting in context something about the lack of direct communication allows the mind to reach the wall earlier. Few of my students come back from interviews saying it was boring and they found nothing – those worries comes later as they begin to analyse their data. (They usually have other anxieties, such as ‘I was so bad’, or ‘My interview protocol was rubbish’.) But they often come back from observational field trips wracked with anxiety that they ‘have nothing’. Almost always one of two things has happened in that case – they ‘gave up’ too fast either by leaving the field before they should have or by staying physically present but unable to maintain the intensity of focus, the presence, in the field that they ought to have.

Sitting on the steps I try to encourage them to ‘see beyond’ their habitual ways of engaging with the world. To think about how they tend to take in things and then plug the gaps their normal routine leaves. I’m a big picture, shapes and sounds person. I tend to engage with the world as shapes, usually by seeing the world as a snap shot, scanning the distance first, and hearing sounds as ‘stories’ (which are of course simply inferences I draw around the sounds). When I am in fieldwork mode I need to remind myself to attend to people as closely as shapes, to near as well as far, to detail as well as shape, and to attend to sounds with a descriptive mindset and not just an inferential mindset. When I attend to people my first take is almost always focussed on their actions, I need to remind myself to observe them descriptively too, to try and see them as people and not just actors in some unfolding event. I cannot tell my students how to observe strategically as they all observe habitually in different ways.

Next I remind them that of course where we ‘are’ (in cartesian space or emotionally, culturally, intellectually) – our starting point of view – is inevitably partial and that we need a strategy for changing that point of view as often as is practical. The more points of view we try and adopt, the greater the likelihood that we will begin to get past our habitual ways of seeing, or being, in the world. But all of this is I think much easier to point out to people than the benefits of not shying away from the wall. Like all walls we don’t want to believe that it is worth the effort, the pain, of overcoming it. We look for any reason, any excuse, to give ourselves permission to simply not cross it.

I was reminded of the wall a lot the last couple of weeks. Having fought through the crisis weeks of my relapse relatively untouched by ‘existential fear’ – there was enough that was concrete to be afraid of, I find myself now in the recovery phase beset by a whole series of very dull, mundane, anxieties. In many ways the last couple of weeks have been the hardest so far. I have always been “good in a crisis” – I was blessed with a stubborn nature and an ability to control my fears when heavily pressed. In a crisis I am quick to identify ‘what needs to be done immediately’ and occupy my fears by getting on with it. But in more everyday situations, when the major threats have receded, I often find myself becoming stuck in a cycle of existential worrying and anxiety. The future suddenly looms large as ‘a long series of too many small problems’ rather than the somewhat easier to grapple with ‘either you will have one, or you won’t’. Being unable to do things the same way as before nips at the heels of my confidence, I struggle to make adaptations, my mind not wanting to entertain the idea that lots of s,all, often mind numbingly irritating or dull, changes need to be made.  Most destructively of all, doubt creeps in. Suddenly I am running away with myself – “I’ll never be the same again, I will not be able to do my job, my future will be a depressing series of losses until finally I am left with nothing.” Balancing on the edge of the abyss is thrilling, a challenge. Balancing on the edge of the slippery slope is just depressing.

But teaching that class I started to wonder if that was not simply my illness wall – the point I had to hang on through. I had my ‘entry to the field’ (the crisis) with all its unfamiliarity and novelty. I managed that pretty damn well, but then I am always happy chasing new experiences. Now though I am the anxious fieldworker beset with doubt and wishing that she could just walk away from the field. But as I try and tell my students, if I hang on there is gold ahead. If I can stay with it, stay present and observant, I will make a new sense of this, an unexpected sense of this, and that in turn will lead to new and unexpected things in my life. Suddenly that wall is no longer something to be afraid of, suddenly it is something to rush towards. So I capture this here, now, for the weeks, months, years ahead. To remind myself to stick with it. The wall may be a long time in the crossing, but cross it I will. And now, from feeling insecure and anxious and deflated I suddenly have a new feeling to add to the mix. The feeling that all experienced ethnographers get in the field when the wall looms. Excitement!

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