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.