Every journey will have its wrong turns, every grand adventure its moments of doubt. Today was one of those – the day when fear gets its claws into you and won’t let go. I think I’m beginning to see the pattern though; a little bit too up one day leads to over-stretching, which in turn leads to tiredness, and in the tiredness come the dreams. Not very imaginative my dream last night – swimming happily in the Gulf of Spezia, watching the divers on the high rocks, when suddenly the current pulls me down and I am drowning.
Mercifully, the fears of MS unfold gradually over time. After the initial diagnosis and its “Isn’t that terminal?” fears are assuaged the obvious immediate marketing image stuff is what comes to mind: wheelchairs, being dependent, losing one’s job. These are the things that bring on the night sweats. Some of the things in the manual of what can go wrong are more easily dismissed in the early years – bladder problems (“won’t happen to me”), balance problems (“how hard can that be?”), spasms (“cramps, no problem, get them all the time”). Sure enough as each one is ticked off it becomes something of a tale of survival, you begin to build your own little private hero narrative – I survived visual problems, I survived muscle wasting and needing a stick, I survived bladder problems (ok that last one was a bit harder to get through, but you do). But as the years go by the unfolding begins to get a little more hard-core. Balance, once dismissed so lightly, becomes a huge, exhausting issue. Likewise spasticity. Constantly fighting your body becomes a huge drain on physical and emotional resources. Nevertheless each challenge is risen to, absorbed by your identity and daily life.
Until one day, when the truly dark stuff appears on the horizon like some terrifying horde of ancient myth. Cognitive problems begin – too frightened at first to even entertain the idea you dismiss them as an artefact of the by now ever present fatigue. But you do know, without doing the reading, you know your thinking has changed. Just as you knew long before you were diagnosed, long before the phrase multiple sclerosis meant anything at all to you, that something was wrong in your brain. I even knew where the “something” was, the thing I would latter come to see in an MRI scan – the location of the scars caused by the disease. I “felt” something in my spinal cord. I still feel them. In time it becomes harder to ignore than address the cognitive issues, so you reach out for help. And back it comes – a long reassuringly worded analysis of the tests of your cognition. You focus on the good stuff – “above to superior intelligence” causes a little internal swell of pride. “Protective factor” of high level of intellectual functioning provides a moment of reassurance. But what was known – that thinking was slowing, planning and information juggling affected, is there in black and white. You adapt, you cope, you finally find a pharmaceutical helper that actually works without turning you into a zombie as previous medications for spasticity and bladder problems had done. But this fear is never fully absorbed – the fear of losing even more cognitive function becomes a daily companion. You battle this fear constantly. It becomes the focus of your daily life. Until you wake up one day and you can’t swallow properly.
It came suddenly, the realisation that saliva constantly gathered at the back of your throat, creating a desire to swallow over and over again. Food never seems to quite clear your gullet properly. Your neck and throat become so tense from constant spasms you begin to be scared of food going down the wrong way – of the aspiration that put your mother or life support for two weeks a few years back, and that killed your aunt in her short battle with motor neurone disease.
So now, suddenly, it isn’t just about the thing that you might need to bear, but the things that might kill you. Now suddenly it’s not about how the medical professions cares for you through this crisis (excellently, by the way), but the role they will play (or not) in your death. And there it is, your death. It’s not the inevitability of it that causes the fear, but the manner. Suddenly you are asking yourself – can I handle this? If choking to death in my own saliva, or aspirating food into my lungs and developing pneumonia, are to be my end will I be able to cope? You begin to feel like some giant’s hands have a grip on your head, not painfully but not gently either, just enough to cause your eyes to tear up. It begins to press in on you, this thought. “Can I bear it?” You try and push it away, but it won’t be budged. You try and rationalise your way out of it. An advanced directive is drafted, lawyer sought. The ‘Zurich option’ is investigated and you reel in shock at the cost, struggle to think of this city that means so much to you, has been the site of so much that is life-enhancing, as the place you might die.
Of course none of the planning, the attempts at control, work. It rattles around and around, filling your eyes with tears. I don’t know any more now about how I will die than I did two months ago. But the odds that it will involve swallowing and breathing have just gone considerably up and the fear we all carry all the time about the manner of our death has just pushed itself that little bit further to the front of my mind.
So today I let myself float a little. Let myself drown a little. Tomorrow will be the better for it I think. I know these days and weeks and months ahead will be a constant battle to stay away from the abyss of self-pity and fear and depression that we all dance on the edge of constantly, especially when our bodies decide to betray us so utterly. I know that tomorrow I need to swim for the shore again. I need to find the perfect rock to stretch out on while the sun dries my skin. Stroll home along the perfect beach, pause and admire the divers again. But that’s tomorrow. Today was for drowning, just a little.