Skip to content

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.

Home is another place

There is a point in life when the prospect of the new is too often outweighed by the disappointments over what has changed or gone. When a visit to a beloved city, building, or person for that matter, seems to be filled with the ghosts of what is no more. The solace of the new usurped by the sadness of the missing. It’s an odd stage of life to reach, I’m not sure if this too passes and something else emerges, and perhaps the accelerated sense of time those of us with life changing illnesses experience has brought me to this point earlier than I might otherwise have. But at this stage I am.

The Hotel Europe in Zurich is one of those places that whilst in the scheme of things has not been in my life for too long, five of my fifty years, fulfils a role both in itself and as a substitute for other ‘remembrances of things past’. And that has taught me to embrace and not fear this time, to allow the threads of life to wrap me in their reassuring, soft strength.

When I first visited it was during a tumultuous period of life when an old love had died and a new one, unbeknownst to me, was about to emerge. I was in Zurich chasing an opera singer, Vesselina Kassarova, whose voice and performances were so powerful I was not unlike an addict chasing a fix. I had seen her perform in London a few days earlier in a concert version of the fully staged opera I was about to witness (twice) at the opera house in Zurich. As I was rushing from a work meeting in Paris to the first of those performances, a matinee, I had elected to book into a hotel as close to the opera house as I could find, hoping I’d have just enough time to get there from the airport, drop my bags and freshen up. As I often did, I had arranged to meet a fellow opera lover who frequented the same opera forums and blogs as I did – one of the great advantages of the Internet is that opera fans travelling alone for productions can now connect with and arrange to meet fellow fans – one of the joys of being an opera fan being the ability to share your passion over a drink after a show.

I walked into an eccentric, at that time teetering on the edge of being genteelly shabby, hotel that reeked of middle Europe, middle (last) century and French New Wave movies. A tiny odd little lift deposited you at the door to a room that seemed little changed from the 20s or 30s. This was a hotel designed to transport you back in time, to a period when a hotel was a sanctuary from one’s daily life, a rationale for intermittently communicating with it as telephone calls from hotels were ludicrously expensive in the era pre-Internet. Large windows opened (oh how rare that is these days) onto a sleepy little street with a view of the back of the opera house a few feet away. I felt without understanding at first (I was in a rush to get to the opera) a huge sense of nostalgia. It would be later that night after the opera before I would understand why.

As a child we had lived in a large Scottish market town hotel. My parents were the managers and my two sisters and I grew up in a world that even then, in the 70s, was anachronistically old fashioned. Waitresses in black uniforms with white caps and aprons served high tea on silver cake stands to local worthies. My father held court over a kitchen serving up what would have been for the time a rich and exotic menu. My mother would sit in the office doing the books and managing the administration of the hotel while I crawled in the stationery cupboard coveting the boxes of pens, smelling the carbon copy paper so magically used to create exact copies (!) in the enormous commercial typewriter I would later beg to be allowed to use. At the reception desk a world of delights begged sticky fingers to explore. A huge bell patrons (there were no ‘customers’ in those days) used to summon assistance, a 40s telephone switchboard used to connect to the various rooms and the outside world with the kind of thick, brown fabric covered cables that seemed so much more appropriate for the mysterious transportation of a voice from one place to another than today’s thin, cheap, plastic affairs.

We roamed the hotel, my sisters and I, like indulged pets. Staff and patrons alike amused by the three little girls who seemed to suddenly pop up as if from nowhere. Perched in the dining room by our mother, the older waitresses would delight in our enthusiasm for the high tea cake stand with its finger sandwiches, biscuits and fancies. The cleaners would giggle when we invaded the formal ballroom after a party to play on the piano or the drum set left from the excitements we would occasionally spy on from the music gallery above;  a forbidden space that we could sneak into from our little rooms in the attic. The kitchen staff patiently taught us how to chop vegetables, or fillet fish, as we shivered in excitement at being allowed to touch the ‘sharp knives’. One of my favourite treats was when the cleaners would let us into the laundry cupboard. It was like heaven in there: the warm slightly sweet smell of the freshly starched sheets; the cardboard, leather covered boxes that transported the bedding back from the launderette inviting small children to pop inside for a game of hide and seek; the perfectly folded blankets whose crisp geometry seemed to me then so beautiful I would sit and stare at their proud folds in awe, wondering what magic the cleaners possessed that they could impose such perfect order on those unwieldy woollen monsters that never seemed tameable when I tried to do the same to mine.

It was the kind of hotel that travelling salesmen of the ‘better kind’ – people who sold mysterious financial products or tailors who made up suits for professional men – stayed in. We had one in particular, a much older man, retired. He was seeing out his old age with a permanent room in our hotel. As a ‘special patron’ he was allowed to send his shirts and collars (he was of that era) to the laundrette with the rest of the hotel’s laundry. One of the magical boxes was his and I remember as a very young child opening it up and feeling such sadness at the old fashioned little pile of shirts and collars, wondering if he felt lonely being one of the last of the men in the world who had shirts like this. And then as you do as a child being instantly distracted by the box lid, which my sisters and I had discovered some months before made the perfect sledge for a thrilling ride down the large, steep, stairs.

The Hotel Europe reminded me so much of the hotel I had spent the years from about 3 or 4 to 12. It was smaller, but it had that same air of ‘serving the middle classes who wished they were a bit more upper class then they actually were’. The bathroom fittings harked back to a time of powder puffs and cut-throat razors, the eccentric lift, the discreet but friendly and highly attentive service. But especially, the sense of pride that only a family hotel can have. A place that those who worked there cared for. Could that little girl quietly watching the living soap opera of life in a mid 70s Scottish market town hotel have imagined one day she would go to the opera in Zurich, still less rush there from working in Paris? As a child left to her own devices so much that she had discovered the very grown up joys of late night continental movies on BBC2, well, probably something close-ish. “The Continent” as it was to us then was certainly where I felt adventure and excitement would lie. I dreamed of Paris, Berlin, Rome, the Alps. A heady cocktail of Bunuel and Bond movies had left me confusingly caught between a desire for revolution and casinos in the south of France. I couldn’t decided if I wanted to be on the barricades or at the backgammon tables, but I knew I wanted to be ‘there’.

I was back there last weekend, for the opera of course. Only this time instead of meeting my fellow opera fan at the opera we met at the hotel as another part of my childhood jumble of growing awarenesses had in the intervening years been realised. The strange feelings of admiration I had, intense enough that an instinct told me not to share them with anyone, for those strong, beautiful women in the films of Godard, Truffaut et al had of course heralded a later realisation that my romantic future lay with women (predominantly) not men. Who knows why two people find each other really? There is a theory though that being somewhere like the opera or a gallery pre-conditions one to be ready to be swept up in the thrilling moment of pull and possibility. We had arranged to meet on the steps, to say hello in advance of meeting for an interval drink and chat. Rushing in worried I was late, a bit distracted and harassed feeling, I wasn’t to know that in a moment a face and a smile were to change my future so thoroughly, so deeply. But they were, they did.

Last weekend we walked into our room together. The hotel had been renovated recently but I had been relieved to find that the essential air of the place had been unchanged, it was just that things worked now where previously it had been a little hit and miss. This was no ‘out the box’ cookie cutter hotel restyle. The calm, unhurried, genteel air was intact, as was the service. With a sigh of relief to be back in this familiar place where our rather unexpected romance had first started, we shared the excitement of the preparation for the opera that night together, walked back there in the post opera haze together. And as we entered the charming little lift, to be haltingly elevated to our room together, I felt so many of life’s little threads pull together around me in a comforting weave that I recognised what it was about this place that felt so perfect. In that city, in that hotel, in that lift, with that woman, I was home.

The past is indeed another place. And so too is home.


Friends Of The Journey

“Love recognizes no barriers. It jumps hurdles, leaps fences, penetrates walls to arrive at its destination full of hope.” — Maya Angelou

Towanda's Window

Fangirling Is Resistance

Lou's Story

Our journey with cancer

Vanessa's War

The wartime memoirs of Lady Vanessa Montague

Equality by lot

The blog of the Kleroterians

Citizen Participation Network

Connecting Research, Policy and Practice on Participatory Democracy


In memory of an inspiring young doctor who mused about life & death through her terminal cancer illness. Her husband (Chris) now keeps the page updated.

Critical Dispatches

Reports from my somewhat unusual life

opera, innit?

a good Tito/mezzo guide


140 characters aren't enough for this stuff...

Bullet Proof Cardie

A doctor in recovery writes...........

Leisurely Seeking Doctorate

A fifty-something American explores doing a PhD in the UK — and then turns 60 and does it


Stuff about user research and delivery, and stuff

Swimming in Stormy Weather

Fieldnotes from the World of MS, White Shirts & Opera

Content At Large

Notes from the front: Content strategy, development and dissemination ideas from champions and leaders in the field


Debunking pseudo-neuroscience so you don't have to

What I did on my holidays

A week in Ireland. Alone

Bella Caledonia

independence - self-determination - autonomy

%d bloggers like this: