Washing machine
Every day the nursing team and medical team would hand over relevant information about the patients, morning and evening; these handovers were done within earshot of the bed a lot of the time. This wouldn’t be much of a problem for the patients asleep, confused or comatose, (which was most of them) but I was none of these.
Twice a day we would act out our little ritual. They would discuss me clinically, surgically and furtively from behind paper parapets and clipboard walls, some eyes sorrowful, some eyes empty: the latter were worse. There was a four-week-old stainless-steel world between us. They were busy. I understood. I would catch phrases and glances and I began a long journey of learning the language of Doctor-to-Patient, even though I didn’t want to; I only knew the doctor’s side of the script and that was how it was supposed to be.
“Road traffic accident.”
“Poor prognosis.”
“Complete spinal-cord injury.”
There was something that felt deeply wrong about this; I had been in their position discussing patients just a few weeks before, and now I had been suddenly transposed into the wrong role. There was a strange voyeuristic component to the experience; to be watched but not engaged with. At some point I told them to hand over away from the bedside, or at least I tried to. Over a year later I reunited with an ITU doctor who had been heavily involved in my care, who told me they thought I had told them I didn’t want to speak to any of them unless absolutely necessary. It’s easy to be misunderstood when you don’t have a voice.
I wasn’t prepared. The words rolled around in my empty evening head. They brought finality and substance and brutal clarity to the smiles that only half hid the horror, the conversation that couldn’t conceal the sadness. It ain’t good, Ed. You can’t run from how sorry they are for you and you know what that means. I could never really escape to deal with these facts and intertwined emotions; I couldn’t even have the curtains drawn to cry. I’m not sure I would have done. I’m not sure if I wanted to.
ITU worked so hard to make me comfortable and did all they could to give me consistent nurses that I got on with. Those nurses preserved my dignity and morale as best they could. They sympathised without pity; they opened up a bit of themselves to me, and I to them, and we shared a strange bond in a strange time: it’s odd how anguish can bring all sorts of people together in a way that you just don’t see any other time. They even got me a TV and some glasses with 45° mirror lenses that let me watch while lying down! Most days we would go through the back and forth of perfectly positioning the TV and balance the glasses, which had to sit precariously on top of my normal glasses, so that I could watch something. I often chose at random; I had only sat down to watch TV a handful of times in the past five years of medical school and I had watched so few films prior to my injury I didn’t really know what I liked; I usually couldn’t sit still long enough to finish them. No real risk of that now. I have a vivid memory of watching Shaft (the 2000 edition if anyone cares) and in one scene Samuel L Jackson says something to the effect of,
“What are you going to do, just lay down and die?”
I didn’t know. Hell, maybe. Those words rolled around in my head too, along with hundreds more. Have you ever seen someone throw a brick into a washing machine on spin cycle? Well I’m from the Internet generation so obviously I’ve seen it couple of times in high definition on YouTube, and it goes exactly the way you think it would; the washing machine shakes itself violently to death. You can almost attribute a sentience, a confusion, to that white box, it’s mouth open in an “O” of surprise and betrayal before it soldiers on to self-destruction. Before those weeks in intensive-care I never would have considered comparing my brain and any product made by Smeg (other brands are available for those of you trying at home), but you can see where I am going; my mind was a washing machine and those thoughts were bricks; I was spinning myself onwards to annihilation. Sometimes I would throw in a brick in myself, sometimes other people would; sometimes by accident, sometimes on purpose. You know what they say; sometimes it takes a brick in your washing machine to make you appreciate clean clothes. Okay, I’ve stretched this metaphor way past breaking point, let’s continue.
Once, maybe twice during this time the police visited me. They asked me questions, and I mouthed some answers.
Take me through what happened. Were you on the phone whilst riding your bike? What condition was the bicycle in? Had you had anything to drink? What were you wearing?
Wait. Could this have been my fault? My parents were telling me I needed a lawyer. Okay. Am I guilty? I guess I’ll get a lawyer then. It all happened so fast. What does a lawyer even look like? Don’t guilty people need lawyers? I didn’t do anything wrong. You’re telling me I don’t just tell the truth and it all goes away? I didn’t do this. Did I do this?
After a few more weeks of the same days and the same routines I achieved my goal; the ventilator was turned off for a full 24 hours. I could breathe again. Sort of; I still had the tracheostomy, and so I was breathing through my neck hole still- it was advised to keep it in until I got to Sheffield as we didn’t want to rock the boat and invite something else to go wrong.
34 days after I rolled into ITU in a coma, the glorious day came that I moved on from intensive care. I say glorious, but in reality, a nurse came by and said that I was moving to the high dependency unit and we need to get my things together. Now that I didn’t need the ventilator, I didn’t need to be in intensive care; I would wait in high dependency until a bed at the spinal unit was available. There was no warning, no time or opportunity to say goodbye to the people who had looked after me, who had kept me alive. I was being transported. Washing machine on tour. I wonder if the bricks will taste different where we’re going. The extent of how jarring it was just made me realise how attached I had become to the staff that had not just looked after me, but shared in my distresses, my fears and doubts. They had watched me struggle, but had also watched me progress. They had spent every waking and sleeping minutes with me, 12 hours at a time, the last 44 days; they didn’t feel like jailers, they felt like security. I felt secure.
Nothing made me realise that more than moving on; I had learnt to rely on and put my trust in the staff in ITU. They knew my preferences, they were starting to learn how to brush my teeth properly, and I had developed relationships with them that meant their singular company for 12 hours wasn’t just tolerable; it was wholesome. Hopefully they feel the same way. Now I would have to start again: strange how moving forwards feels like going back.
Anyway, back to HDU. It turns out that HDU is a lot like ITU, but instead of one-to-one nursing it was two-to-one. I was still really well looked after and was getting stronger everyday; I stopped requiring any additional help to breathe; I could merrily breathe through my neck hole all day and all night. I could talk for much longer; I could have whole conversations. What a time to be alive. By this point I was in a holding pattern; I had achieved what I had needed to at the hospital I was in and I had outgrown what it could offer me. I was just waiting for a bed to be available at the spinal unit, a place that I was told could cater for my very specific needs and help return some semblance of life to me.
One Tuesday on HDU it was time for my physiotherapy. We were restricted by time and resources and the fact I was stuck in bed, but we tried to get as much neuro-physio done in that hour as possible; one thing I was determined to not be limited by was my effort. Sometimes Samuel L Jackson was in my ear, and that’s a voice that’s hard to say no to.
“What are you going to do, just lay down and die?”
No Samuel, not today. Put the bricks away. Okay, so when you lie down for a long time your blood pressure control goes south. Literally. Especially with a spinal-cord injury. Your body forgets that when you go upright the blood vessels in your legs and abdomen have to constrict to ensure enough blood keeps moving up to your brain, and the muscles in your legs and abdomen do a good job of helping this process. Well my muscles were on a permanent holiday and were most definitely not coming back to work and the blood vessels had been chilling out for the last four weeks and weren’t particularly quick to get back to grafting either. I found this out the hard way. My physio manoeuvred me and sat me up on the edge of the bed, stabilising my flaccid torso from behind. I was still very tired and very weak, the whole process feeling like an out of body experience; I was being moved around and I couldn’t feel it but everything looked the same; my legs appeared to still be attached, as were my arms, but apparently a man was holding my back to prevent me from rearranging my teeth on the floor but I couldn’t feel him at all. My neck was so weak my head felt like a bowling ball, my complete lack of balance made it hard not to panic and instinctively I wanted to reach out a hand to steady myself. Worse than that, the blood was draining out of my head. Have you ever stood up too fast and felt that lightheaded feeling? The lightheadedness came on fast and wasn’t letting up; it kept going and my ears were ringing and pinpricks of light were jumping in my eyes and the corners of my vision were drawing in and I was trying to speak and-
“Ed are you okay?”
I was lying back down in bed. Concerned faces were looking down at me. I must have come close to passing out. If weakness is a state of mind then that’s the state my mind was in. The washing machine got some fresh bricks and ran on spin for a good few nights after that.
I had one final visit from speech and language therapy; one final test. I had to eat a biscuit.
I’m not saying that I had biscuits thrown at me as some sort of alternative therapy, although at that time eating biscuits was nowhere close to the most extreme thing I would have done to try and escape my injury. But apparently biscuits are at the top of the “hard to eat” hierarchy; if you can eat biscuit, you can eat anything. I underwent the biscuit eating ceremony and several swallows later I survived unscathed; I was allowed to eat whatever I wanted! I was a man who’d been sustained on (very nutritious) brown sludge through a tube for six weeks with the occasional Twister as respite; I had been dreaming of my taste bud emancipation for a long time.
I had my birthday in HDU. I’m not going to tell you where it ranks on the all-time list but it’s definitively out of the top 10. I must have received more cards than I ever had before or since. I think it gave me a degree of approachability and everyone else an opportunity to communicate, to tell me how they felt. In that respect it was beautiful. I had been craving a burger for weeks, and so that was the first proper meal that I had after my injury. I dived in at the deep end. I deserved it. We had to cut it up into tiny pieces so I could eat; much like everything else, my swallowing muscles were so weak even the basics had to be relearned. I managed maybe a quarter of it before I was full; my stomach was in no way used to or ready for normality yet. I guess I wasn’t either. I wish I could tell you it was a triumph but all I remember is disappointment and growing embarrassment as bits of food were inevitably dropped on me. Eating lying down is hard. My girlfriend got me a cake that was part ice cream, so it would be easy for me to swallow. We read cards and pinned them to a board. She told me she still loved me. We cried. It is what it is.
The following day I paid for that burger with some nasty abdominal cramping, but I would do it all over again if I could; sometimes you just have to look life in the face and say fuck you.
A few days after that I found out that there was a bed for me at Sheffield and I would be moving on again. I hadn’t had time to get settled and so there was less upheaval on the ward and in my heart; most of my stuff was still in plastic bags. I don’t remember being afraid; I just remember being hopeful that I could salvage myself in this new place.
On one of my final evenings my nurse in the day came back in the evening. We had discovered our mutual love for board games and he had offered to come back and bring a game to play with me after his shift had finished. If you’re reading this, I didn’t forget. It was very kind of you.
I trust your biscuit eating ceremony was with a McVities Chocolate digestive and not a ginger nut!
Seriously though I’m glad you are making progress, your humour in such a shit situation really comes through. Again I wish you all the very best and more progress. Like reading your blogs…… and you will at some time look back and see how far you have come (oh and by the way happy birthday!)
Always a privilege to read your insights Ed. Thank you for deciding to share them. Wonderful to hear that the hospital staff around you were so great too.
I take something from each and everyone of your blogs. You write beautifully and with honesty. Thanks for sharing.
Thank you for your blogs Ed.They are always so honest and enlightening to read, striking the tone so well by telling us how it is, but with humour, apt metaphors and hope running through.
Ed I have just read this and even just texting this message to you has made me aware of how we take everything for granted x just moving my thumb across the keyboard is completed with involuntary ease x you are truly remarkable Xx
Wonderfully written. Please keep on writing.
Inspirational, thank you for sharing.
Great insight to what you’ve been through and really well written I felt guilty when I cracked a smile I’m off to watch someone chuck a brick in the washer on spin xx I look forward to following more of your journeyb