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’ve been away this last couple of weeks. Not in some exotic location for work or fun or both. In fact for most of the last couple of weeks I have been lucky to be out of bed. But I have been on an amazing journey – the first leg of which has now completed, the second leg about to begin. I am sitting at a metaphorical railway station (Simon and Garfunkel playing in my head of course), waiting for my connection. This brief pause, alone here, brings with it a precious gift. A moment of mental alertness and emotional peace during which I can at last look back over my adventures these last few days. Importantly too, I can also now look forward; a little anxious, but steadied, and readied, for the days ahead. I look back at myself a week ago, beset with the fear that was my constant companion at that time, and I long to be able to take this message to that terrified creature, to reassure her that there will be another day when fear is not the primary emotion in her life, despair not the predominant thought.
Perhaps I am writing this here so that someone who needs it (or knows someone who needs it) might find it, and be reassured just a little. Or perhaps I just need to share it for me, so that I don’t have to pretend it didn’t happen. So much energy gets wasted that way. We exhaust ourselves projecting and protecting what think of as ourselves – but which is in fact a carefully constructed image (or rather a number of them). When we are young we have much energy and we can devote large amounts of it to the careful construction of these images. But as we age or face major challenges then the cost of that becomes enormous; an emotional and physical drain quite counter productive to the urge that inspires our image making – the urge to be happy. We make ourselves miserable, we confuse, or irritate, offend or sometimes scare those around us, all in the name of happiness. But today I am reminded of what happiness really is, and therefore who (if anyone) reads this, and what they make of it, is not uppermost in my mind. There are a small number I know will read, and I know this is the only way I can effectively really share where I have been with them. But equally, in part it just pleases me to be able to do it. I like to write, it’s one of the few things I still feel confident I can do well. So I am writing this because I can and because I need to; the nuances of my motivations are less important than those facts. And with that, begins the tale…
We just had a monsoon downpour here in Tayport. Thirty minutes of torrential rain and then as suddenly as it came, the sun is out again…
I feel so happy. A week ago I could barely walk. A week ago I was so exhausted getting to the toilet right outside my room left me feeling like I had run a marathon. If I could get up the energy to control my wildly errant legs I had to cling to the walls my vertigo was so intense. Today I can walk, today I can make a cup of tea by myself and carry it back to my room. By myself. Today that delights me. Today I am me again.
We have such fantasies about our ability to control our direct experience of the world, let alone our identity, our fate, or the actions of others. Long before we get to anything as messy as human-human interaction, we are at the mercy of myriad chance encounters between our neurons, synapses, atoms, and the various natural and artificial chemicals we encounter in the environment and ingest by intention or accident or force. My brain has been the subject of a bizarre chemical experiment these last few days. Bombarded for five days with (very) high dose corticosteroids and assorted other drugs to protect my poor body from an onslaught from my immune system. This was what felt to me like a last ditch, desperate attempt to suppress my immune system completely enough and long enough to give my brain a break. The experiment has worked, so far. The drugs have killed my own immune system and in so doing an unusually (for me) severe multiple sclerosis relapse has been stopped in its tracks. In fact in the case of the newest and most distressing symptoms that came with this new own goal, it’s not just been stopped but to a great extent undone. My errant autoimmune system has been put in its place.
I have been incredibly lucky these last 20 odd years since unexpected balance problems walking along a beach wall in Split first alerted me to what a year later would be diagnosed as multiple sclerosis. Rather than violent relapses followed by remission (relapsing-remitting MS) I have largely followed an initially quite benign and then very slow progressive path (secondary progressive MS). It’s had its challenges of course, the steady drip from the tap above me gradually building disability, rarely allowing me the luxury of forgetting it was there, threatening my future, limiting my present. But I have an armoury of techniques (some more productive than others!) for coping with that. As a consequence, the violence of this most recent relapse was unfamiliar, overwhelming, and needless to say terrifying. For a few days I circled around like a rat in a trap, desperately trying to stave off the moment of recognition. I “rationalised” and struggled and pretended to myself and everyone around me that it was “ok”; “Nothing to see here people.”
And then the monsoon came. In such circumstances thoughts of protecting one’s cherished independence are the first to be abandoned. The facade is abandoned slowly at first then quickly as the panic mounts and escape routes seem more and more illusory. Help is begged for finally. Next, self-determination is sacrificed and resistance to taking steroids crumbles. Finally dignity goes as the body curls in and hopes only for relief. On Monday I finally gave in, and swallowed five of the most disgusting tasting tablets one can imagine. I sank back and waited for god only knows what. I was beyond caring, the effort at pretending I was ok was too great. There was nowhere else to go now. I was on the train and there was no getting off till the next stop in five days time.
Luckily I was so exhausted the first few hours passed quickly. And then like the sunshine after the downpour, it came. Within a few hours of the first dose a huge rush. The physical symptoms were still there but the mind was alert now, and most importantly of all, hope had returned. I barely slept that first night as the steroids cascaded through me – I could feel them rushing in my blood, in my ears. I felt like I did as a girl standing at the edge of the top diving board just at the very moment I realised I really was going to make the dive this time; fear overwhelmed by exhilaration. It would be the next morning before I surfaced.
As I woke there was a sudden shock as I realised I could feel my right foot. It had been (rather terrifyingly, for it’s my “good leg”) “lost” to my senses for a few days. I asked my leg to move, and smiled as I realised it did with more ease and speed than for many days, weeks even. But there was more. Suddenly I noticed the room was not spinning so violently. I moved to sit up, and I did. When you’ve lost the ability to do such elemental things, the shock of accomplishment is intense. Thrilling. I was smiling so much my jaw began to ache. I felt strangely different, and strangely “me”. The “me” I don’t often reveal to myself or others, the “me” that my companion MS usually shoves into the shade, the essential me was here again.
Over the coming days I was like a child with a new toy. I explored, prodded, pushed, delighted. There’s a tingle in the bottom of my left foot (the “bad leg”). I have not felt the bottom of that foot for years. I stand from a chair without having to push myself up like an eighty year old. The bruises on my feet and legs finally have a chance to heal as day after day passes without a fall or a stumble or a bash. I can smell things properly for the first time in months. Each new dose brings with it another steroid “high”. A few hours after taking it I feel like someone who’s gone from watching the latest blockbuster action movie on a 70s black and white 12″ TV set to a 50″ LED 3D HDTV. Everything is brighter, the flowers in my window box and my garden assault my senses. The tremor in my left hand eases and the fear of making a hot drink recedes (as a Scot the loss of the capacity to make tea bites deep).
Most amazingly of all, the “cognitive fog” that had enveloped me slowly over the last few weeks as the attack built is lifting. I play the brain training game I have used for the last few months to try and control my fear of this most frightening symptom of MS, and am shocked at how well I do.
The relief from the physical symptoms is significant. Though the underlying disability years of MS have left me with is unchanged, the damage of the last few weeks is greatly improved. And the clarity of mind is simply incredible. Of course there is still an element of steroid high at play – I know that now that the final dose has been taken the coming few days will be a challenge as my body, bereft of an immune system, attempts to kick itself back into gear. But right now, sitting here on this most beautiful of station platforms, watching the sun dry the rain from the flowers by the window, I grab hold of this amazing gift, and I delight. Truly, it is the time after the storm.