So, a quick recap; its April 2018, I’ve been hit by a car, hit the road, had my vertebrae rearranged, had emergency surgery to re-rearrange them, 10-day coma, infection, a five-week stint in intensive care trying to shake my unhealthy dependency on the ventilator, and a transfer to Sheffield spinal unit. Now I’ve just been seen by the junior doctor about my own age and seniority, I have a fat tube up my nose, another in my urethra, a fatter tube in my right elbow up to my heart, an even fatter tube in my trachea, and a mood nestled somewhere between anxious and suicidal. I’m flat on my back, unable to sit up, laying in a small room with another bed to my right, there’s one small window and the curtains are a demoralising shade of what may have originally been mustard yellow a decade ago. If I look left, I can see out into the corridor and towards the nurse’s station.
A man in his late 50s approaches the room with a stride that simultaneously says “I’m very important” and “I’m busy don’t talk to me” in a way that is only achievable many years into consultancy. This assessment was only bolstered by the five strong cohort of presumably less-senior doctors shuffling behind him like ducklings with access to a professional wardrobe. One of the ducklings was the junior who had spoken to me earlier. She was rifling through the medical notes spread open over one arm and is trying to keep up. The man enters the room and the stragglers squeeze through the doorway after him. The curtains around the bed are cast further back to allow the group to approach and the consultant looms over me while his audience fill in the few metres between the foot of the bed and the wall. It was hard not to be intimidated, and none of the juniors would make eye contact with me; they were here to observe, not interact. I realise now, looking back, that I will have been guilty of the same offence; the patient in the bed is a learning objective, the scene playing out in front of you is just that; a scene. Entertaining, or informative, but regardless at least one step removed from you and in no way threatening to become direct and tangible.
He introduced himself as my consultant. He neglected to introduce the ducklings.
“I’m going to have to ask you about everything that happened, as the hospital haven’t sent your notes across.” He said with a detectable amount of derision. I thought of the staff that had nursed me back to health over the previous five weeks and with many of whom I had developed really positive relationships with. I was already antagonised by this man. I could see the junior I had spoken to earlier squirm, realizing he was about to ask me all the questions she asked me only half an hour previously and she would have to write it all down again.
I answered questions regarding my injury and the consultant was surprised at my medical terminology and asked me where I had learnt it; I explained I was a doctor. He appeared to be either entirely unimpressed or intermittently deaf, I couldn’t tell which diagnosis was more likely or more worrying. The dynamic of the interview was uncomfortable; I was weak, laid flat, unable to project my voice and being asked to discuss sensitive medical information in front of six strangers. In contrast, he was stood over me, the five juniors had not been introduced in more than a cursory way, and I had already been asked these questions half an hour earlier. He then proceeded to do a neurological examination that by this time I was very familiar with, then stretched my shoulders to assess the range of movement. At this time my shoulders were stiff from weeks of immobility and the examination was almost as painful and uncomfortable as the prior 10 minutes of conversation.
“When you can sit in the chair for four hours, you will be assigned an OT and physio and start therapy,” he concluded. He then turned away from me, administering a series of orders to the waiting ducklings -which I was not privy to- and then they promptly waddled out of the room in a flourish of demoralising yellow curtains. I reflected that I hadn’t been out of bed for the past six weeks, the closest attempt being me sitting on the side of the bed and promptly passing out. I also received at least some therapy whilst in bed on ITU; why couldn’t that happen here? I was dismayed, and a little confused. The whole event was intrusive, awkward and unexpected, like a stranger’s dog aggressively sniffing your perineum.
Some time passed while I vacillated between looking out of my little window at nothing in particular and watching staff members wander the hallway to my left; I could only see them in the corner of my eye. Eventually a monolithic lady ventured into my room with a red button, a disturbing shortness of breath and what looked like two oversized skateboards with no wheels. Firstly, the big red button was secured with Velcro and a catheter bag strap to my pillow and then connected to the nurse call switch. The spherical support worker then said something to me in a cheerful and very thick northern accent which was both very comforting and almost completely unintelligible. Over the course of the next few sentences, I began to get a handle on how some people in Sheffield speak. This isn’t a joke; I genuinely struggled to understand some people’s accents: what the hell is a lug ‘oil?
“These are crucifix boards, love. They’re for your shoulders.” The lady said, sliding the boards under the mattress at shoulder height. Presumably this was one of the items in my consultants’ package of recommendations for me that I had not been privy to. My arms were then strapped to them rather than nailed in true commitment to crucifixion practice. To begin with this was quite uncomfortable with my shoulders, but in hindsight it definitely helped. You would think that I would be disturbed by having my arms strapped down, but I knew when I first felt that stiffness was a problem and was disturbed by how uncomfortable they had become in just a few weeks. Also, frankly, they weren’t doing much anyway. It is interesting that without the ability to see myself, move myself and interrogate my own body, I had very little insight into what sort of condition I was in. This was probably a blessing in disguise.
Several hours into my Jesus cosplay I was joined by Dave, who would be my roommate for the next few weeks. I knew his name was Dave because the whiteboard on the wall opposite where his bed would end up said “welcome Dave” with a smiley face on it. There was something tired and sad about it. When he first got wheeled in that afternoon all I could see was a bed and an indistinct figure. He got parked to my right, but the arrangement of the room was such that his bed was further forward than mine, so I couldn’t turn to see him. The next few days all I knew of Dave was his legs and his voice. His voice was distinctive because, as I would later find out, he had smoked a pipe for 30 years and the resultant throat cancer necessitated a laryngectomy. He was also from Yorkshire. To speak he used an Electrolarynx, which sounds like a synthesiser heavy prog-rock band but is actually an electric razor looking thing that Dave would press to his neck to allow him to speak, admittedly like a robot. The guy sounded like a Yorkshire Dalek.
He has to live in the midst of the incomprehensible, which is also detestable. And it has a fascination, too, that goes to work upon him. The fascination of the abomination — you know, imagine the growing regrets, the longing to escape, the powerless disgust, the surrender, the hate.
Heart of Darkness, Joseph Conrad
In the evening Izzy arrived. By this time, she had gone back to work as a junior doctor, encouraged by people around her on the basis that it would provide a welcome distraction from everything else that was happening. I think this would have been a more effective strategy if her work had not been in a hospital, sometimes requiring her to go to ITU whilst I was a patient there. Medical careers are not kind. Izzy had travelled to Sheffield by train after work, and upon arriving at the unit was told by the front desk that there was no patient with my name on the wards. She eventually found me, stressed and in tears. It was probably a more stressful time for the people around me and it was for me; they had to adjust to me moving further away, being less accessible, less safe. I can’t remember what we spoke about. She unpacked some of my belongings, which had remained in plastic bags on the floor next to my bed. Visiting hours ended at 8 PM, and so I spent the evening with an audiobook and the ceiling, whilst Izzy went home. I was homesick in a strange sort of way, but home was six weeks ago and non-existent now.
In the mornings, it was the bowel routine. Now, I don’t ever remember anybody explaining to me formally what the plan was, but they must’ve done at some point. I’m probably just suppressing the memory. Many of you have, understandably, never considered how someone who cannot get out of bed with no sensation or bowel control takes a dump. That’s reasonable; until now it’s probably never been particularly relevant to your life. Now you are going to find out. The key issue early on in spinal cord injury is that your bowel essentially goes to sleep. It gets knocked out. You’re also laying down so gravity is not contributing much to your gut motility, so it’s easy to get constipated. As a result, you end up on equestrian sized doses of laxatives, and every morning at 6 AM I would be rolled onto my side, an absorbent sheet would be placed underneath me, and I would be given a stimulant enema; this stuff would agitate my colon, making it contract. The next step, half an hour to an hour later, when someone would come by and essentially glove up, lube up, and rummage around in my rectum to ensure it was empty. The strange thing about this ritual is that I couldn’t really feel it; just had the vague notion of what was happening. Later on, I would sleep through the whole procedure, but in the beginning, it made me feel dirty and disgusting. Part of what made these moments more difficult was that they were only sad punctuations in long sentences full of daytime TV. They weren’t balanced by progress or positivity.
Over the course of the next week or two a few things happened in the journey towards making me fit enough to engage with therapy. My NG tube came out and I could eat normal food again. I remember being so weak that eating made me tired, and worrying that I would not be able to eat enough. So far, even eating was something that been done for me. When discussing my nutrition, a nurse did not believe I weighed 25kg more only eight weeks ago, implying I was stupid or confused. It was the small interactions, sometimes subtle, sometimes less so, that slowly pushed me to retreat inwards. These events may have been insignificant from the clinician’s point of view, but I remember them clearly even three years later. As a result, I was prescribed absolutely disgusting nutritional shakes called Fortisip (the additional protein version), which I proceeded to accumulate and stash around my bed rather than drink them. I’ve since found out that they actually have a really high street value because it’s like a week-long meal replacement if you’re a malnourished drug addict, of which there are many around Northern Gen Hospital because it’s in Sheffield. I could have been the Fortisip kingpin.
The first few evenings after my feeling tube had been removed a girl in her late teens or early 20s was the support worker on shift. She asked me what I wanted to eat, running through a list on a clipboard. In the future it became a running joke with my family that the spinal unit had been bought out by Big Potato, because every meal every day featured the things in at least two forms. Mashed, jacket, chips, sauté, strange lumps. Unfortunately, it was sometimes difficult to tell which preparation method of potato you received. Anyway, half an hour later she returned with curry, I think. She then fed me. This was awful. I quickly realised I hated being fed; lying down it was hard to swallow, and it was very difficult for her not to spill food on me. Having food spilt on you is a surprisingly degrading experience, and even more demoralising when you consider that the same person will then have to help you change into a clean hospital gown, or you stay in soiled clothes. Either way your ego and self-respect does not come out intact. The curry wasn’t even good. To add insult to injury, the lady feeding me regaled me with the tale of her mother’s recent death and how difficult she was finding adjusting to life without her, to which I responded with nodding and noncommittal mumbling while trying to catch the errant spoonfuls of curry coming towards me at varying angles and velocities. I never realised just how sociable eating is; it can be incredibly socially taxing to have to eat with someone who you have nothing in common with or just don’t like, let alone them feeding you as well, which is even more intimate.
From this point onward -I think understandably- I only ate a few sandwiches a day, as even though they were virtually unspillable, I could usually work out what was in them, they could be eaten quickly, and the taste was a solid 4/10, rather than risking something that could range from 1 to 6. It also reduced the risk of having to talk to somebody I didn’t like, which at the time was just about everyone.
The next thing that happened is my tracheostomy finally came out for good. You would think it would be an involved medical procedure, but all they do is pull the plastic tube out of your neck, no anaesthetic, no problem. Then they don’t suture your new neck hole, they just slap a dressing on it. This meant that for the week it took for it to heal, when I would breathe or talk the dressing would bulge as if I was a very strange bullfrog, and if one edge came loose my neck would whistle while I was talking. If someone made me laugh, I sounded like a demented kettle.
As the first weeks in Sheffield passed, I changed. My motivation was waning, my ability to do the dance to friends and family was fading. There was no gas left in the tank. I ate very little; I weighed less than 70kg, a weight I hadn’t been since I was 14 years old. I spoke even less, living with my headphones on to insulate me from the ward and reality, with the same audiobooks on repeat to avoid having to ask anyone to change what I was listening to. I resented having to ask anyone for anything, I resented having to speak. I resented my lack of autonomy.
It was a strange time. I was surrounded by people who were living my life. Working my job. This wasn’t something that struck me consciously at the time; instead, it manifested as a liminal sense of unease, sometimes a Truman show-esque depersonalisation trip where none of it seemed real, and sometimes a universal incomprehension. I’m not sure I had the capacity to be furious at the time. I’m not sure how I would define my relationship with reality during this time; sometimes I had very little insight into my condition, with little knowledge of how I looked, if I was hungry, tired, irate, depressed. I often didn’t know where I was, or where I was going – both literally and metaphorically. For weeks my only orientation was the ceilings that I passed whilst being transported supine; I couldn’t tell you the layout of the unit, the bay or anything else. It could also be said that I had too firm a grip on reality, with a brutal amount of insight into my medical future. I think it is delusional for clinicians to expect patients in these conditions to be able to emotionally regulate themselves, to just work hard and have no problems. Let’s be clear; these patients have problems. I had problems. Problems like never walking again, double incontinence, annihilation of self-worth and self-image and unbelievable strain on interpersonal relationships. They are in an alien world but you, as the clinician, are just at work. You get to go home. Their home is a four-bed bay and a cupboard.
This ended up being really long, and parts of it not very cheerful. The spinal unit was a really weird place with some really weird people in it. It was sort of like venturing into a jungle, with hidden dangers, strange creatures and poisonous food. I have so many more stories to tell, but it does get better slowly I promise. Thank you so much for reading, hopefully I’ll see you in the next one.
I have a belief that through technology you will get a better life. Through VR headsets or advanced robotics. But often I am brought back to red dwarf and the book better than life that had to be outlawed because no one wanted to leave. There are many sci fi books that suggest there will be an augmented reality in the future. But actually some of the simple things in life give us pleasure. I think you have a part to play in this augmented future. But as you said it’s your mind that needs significant care. Please keep going. I’m sure it gives others who are less eloquent and good a pointing out the dumb stuff who need you. I think about you often when I go out for a bike ride. Stephanie’s not happy with me breaking bones. But I still want to go out.
Thank you again, Ed, for sharing your intimate and inspiring words. As always, written so well.
Amazingly humbling. We always appreciate you sharing such a raw and ongoing journey.
Keep writing: such a wordsmith.
Forty years on and not much has changed. In reading your experience I am transported back to Nightingale wards in Stoke Mandeville and patients with night terrors drying out from alcohol abuse and screaming all night long. There were good times, there were depressing times in eighteen months.
I haven’t read more of your story, so I don’t know where it goes but if you want an interesting read try Moving Violations by John Hockenbury