Into the Dark (part two)



A typical communication board

I spent a week in the St Helier hospital ICU where doctors and other staff struggled to stabilise me enough to make a transfer to the Royal Brompton safe. It was, I can state without a hint of hyperbole, the worst week of my life. Despite being heavily sedated, I was in a great deal of pain. Every breath hurt.


When you see CPR performed on hospital dramas, you see the photogenic doctor or nurse rhythmically pressing down on the patient’s chest, humming along to the tune of Nelly the Elephant or Staying Alive. Someone shouts “We have an output”, and the scene cuts to the patient sitting up in bed, surrounded by relieved relatives. What you don’t see is the damage done to the ribs caused by the pummelling the chest received. A common complication of CPR is broken or fractured ribs. I was fortunate, none of my ribs were broken or fractured, but boy did they hurt. Mind you, I’m not complaining, the alternative to some damaged ribs is a lot more terminal.

Another source of pain was my mouth; it was being held open by a bit of shaped plastic, so I didn’t bite down on the tube that had been pushed down my throat and into my somewhat battered lungs. The plastic cut into the sides of my mouth, and there seemed to be no way of adjusting it. My mouth was painfully stretched, and I began to wonder if I would end up looking like the Joker.

And, in addition to ribs and mouth, was the pain caused by the way I was lying. Firstly, there was still the matter of the pressure sore that I had gained on a previous admittance to St Helier. It was still excruciating to lie on, but it is a hospital protocol to move patients regularly, ironically to prevent pressure sores. Then, to double down on the irony, I was frequently repositioned back on to the previously acquired sore. Furthermore, how I was positioned was often painful for my joints. My shoulders could cause me agony if I not positioned correctly, and my arms had a near continual burning pins and needles sensation. These positioning issues arose not from poor nursing, the staff were excellent and professional, but from my total inability to communicate these matters in any way, shape or form.

I could make no sound at all, the plastic guard in my mouth guaranteed that. I couldn’t even make the default clicking sound I use to draw attention when I can’t speak. I couldn’t make any form of facial expression, the ‘fascio’ aspect of FSHD had long seen to that, so I couldn’t screw my face up in a way that might signal distress. I couldn’t wave, I couldn’t kick my legs like a toddler making a scene, and I most certainly had no means of using the joystick-controlled computer attached to my wheelchair. It felt like a terrifying, but hopefully temporary, kind of Locked-in Syndrome.

There are such things as communication boards that enable you to spell out words one letter at a time by blinking an eye or nodding. The problem with them is they are extremely slow to use, so slow that by the time you have reached the end of a phrase or even a word, either you or the operator has forgotten how the word or sentence started.

Another problem is that most people don’t know how to use them or, more often than not, know they even exist and therefore don’t think to use them. And, heaven help us, if you are even mildly dyslexic, like Polly, for example. You might think that, in this day and age, there would be a technological solution, and you’d be right, there is. We will come to that in a near-future blog post.

In the meantime, my only hope of even the most basic form of communication to indicate my increasing discomfort lay, as ever, with Polly. To strangers and friends, it often appears that Polly and I have an almost telepathic level of communication. Polly maintains that it’s just her ability to interpret my 37 types of eye-roll. However we do it, Polly can recognise even the slightest indicator of distress from me and, the most likely source of it. She also knows the best position I need to be in for any given circumstance and the best way to move me.

Polly had been with me almost continually during the first couple of days since everything went downhill faster than Lizzy Yarnold. Even after the most critical danger had passed, she was still there virtually all day every day but, even she needed some sleep and to do the washing, shopping and the like. There was also an anxious Labrador at home who hates it if his pack is not together, preferably in the same room, where he can keep an eye on us, in case we might be eating something and need his assistance. There were also two teenage boys at home who, left to their own devices, would dine exclusively on home-delivered pizzas. So, there were sometimes longish periods when Polly couldn’t be in two places at once. Those were the worst times. It felt as if it would be impossible to claw my way back from this particular precipice.

The week passed in a haze of hallucinations, sedation and agony, with only the occasional bout of lucidity. I needed a tracheotomy, but the doctors had concerns that because I had had a series of tracheotomies back in 2000, there might be too much scarring to make the procedure safe. The matter was discussed at length. (Note to medical staff: Drawing a curtain around a bed does not render it soundproof.) There seemed to be a worry that complications might arise that would make it difficult, if not impossible, for me to leave the ICU. I have some sympathy for their predicament. Intensive Care beds are hugely expensive; research carried out in 2006 (Cost-effectiveness of adult intensive care in the UK – S. Ridley and S. Morris) put the cost at £1328 per day (approx. £1950 today) but with many variables that can massively inflate the cost per diem. This is cost-effective given the survival rate, but it is unsustainable for an extended, open-ended stay. (The median duration of a stay in ICU is two days.) ICU beds are in high demand and not used for long-term care. St Helier wanted me transferred as soon as possible, at which point I would become the Royal Brompton’s ICU problem and not theirs. Understandable really.

I transferred to the Brompton in early October, but I have no memory of the no doubt exciting ambulance journey that blued and two-ed me into London. I just woke up, seemingly in my old college common-room, to be told they are about to tracheotomy me. I remember thinking that I thought the old college building had been demolished years ago, but maybe it had been repurposed.

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  1. Donna on 12/01/2020 at 2:03 pm

    It’s always a relief to get to RBH in my experience.

    • Stephen Deal on 12/01/2020 at 2:22 pm


    • Kate ( Karen) on 12/01/2020 at 5:22 pm

      Blimey Steve- I really don’t know how you’ve done it! Much respect ❤️

  2. Wendy Boulter on 12/01/2020 at 2:47 pm

    I remember you Polly and the boys from when I worked at park lane pharmacy. The boys were only small then. Love reading your story and look forward to your email to let me know your story has continued.

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