Chapter Two: A Very Local Prison

I was a happy, if fiercely competitive, child. As long as I was winning, I was content. Which obviously wasn’t all the time, but the pursuit of victory kept me occupied, whether in tennis, monopoly, or even just year-seven French vocab tests. 

That competitive streak subsided (to some extent) so sanity could remain for adulthood. With maturity, which teaches very quickly you can’t always win, can’t be the best at everything (or anything, realistically) and also, that you can’t have everyone like you. 

You have to pick your battles, or at least work out what they are. I was happily plodding through these uncertain steps into my twenties when disease struck and suddenly life was no longer about figuring out a sense of purpose. It was about survival. 

Happy-go-lucky character that I’ve always been¹, the idea of self-harm, that someone could or would ever choose to slit their wrists open, had always been incomprehensible before. Before this year, when my life was plain sailing. Now, just as the waves had almost got me and Franciele in Rio, I was drowning again. Each time the disease receded for days or weeks, I rose to a rasping breath of false hope that I was going to reach the shore. Then that inexorable pull wrenched my gut upside down and inside out and crashed me, flaring, back into submission.

Someone who was very close to me said this disease had changed me. Harsh, hurtful, but true. Before the struggles of these toileting twelve months I’d never had suicidal thoughts, never understood or even experienced depression at all. 

I lost a quarter of my body mass. Lost the ability to sleep for a year. Lost the freedom to be confident anywhere more than a few metres from a toilet. Lost my energy and my patience. My body was no longer a marvellous machine, the highly functioning product of aeons of Darwinian refinements. It was a prison. Run-down, with bloody, dodgy plumbing. 

Asides from the insomnia, steroids give me the shakes. Laying alone in the dark, dank, mould-peeling bedroom of my old flat after another early-hours race to the bathroom, I observed my wrist quivering in the semi-light of another morning of this new normal, this semi-life. And I understood. When you are held hostage to your health, be it mental or physical, trapped in your body, it makes perfect, terrible sense. Those blue veins tempt. There, at the surface. They offer a way out.

Thankfully these thoughts were rare. That same person who claimed the disease had changed me more frequently accused me of being all too painfully positive about my condition than so morbid. I had only experienced this – this very local prison – once before. It was a snapshot of pain to come…

(Durham, UK, 2014)

My eyes are open but my body will not move. Invisible forces vicingly hold me down, stock-still. Nothing supernatural, don’t worry. I’m a Physics student, after all. But something is seriously wrong inside. Every ounce of energy has been consumed by this illness the last few days. Now, I must be exhausted. Spent fuel rods. Alive, but incapable of movement. No, I must move. Because I will need to reach the loo again at some point all too soon. 

I try to calm my panicked breathing as that is only wasting precious Joules. My tennis bag and some loose clothes provide cushioning as I half-roll, half-fall to the floor. Pivoting takes 2 minutes or 2 hours, I couldn’t tell you. The crawl to the (thankfully en-suite) college toilet is similarly intemporal. Something tells me water will help stimulate some vigour within. Still on all fours I reach up and grapple for the shower knob. Turning it, I fall with two hands in the basin and the spray splatters forgivingly on my hunched shoulders, dissipating the paralysis. I can move. I can stand. I can sit back on the loo. Wash my hands then more water on my face. Then back to bed. 

Fortunately, I only woke up in this state of terror the one time. But that bout of the standard fresher flu possibly wasn’t so run-of-the-mill. Seven weeks into a new life at Durham, recently made friends don’t know you well enough to notice the difference between a hangover and an extended period of deterioration. But I returned home for the Christmas break having lost over a stone, despite already being slim. Unknowingly, I had undergone my first flare of Ulcerative Colitis. 

I didn’t see a nurse, didn’t see a doctor, barely saw a human at all for those dark, drained hours in my college room. Telling myself it was fresher flu and that I didn’t need to get help. The only form of care I received came from the lovely local ladies who cleaned the college rooms. A small minority of public-school pillocks (Durham attracts a few) treated these women with as little attention and care as they did their rooms and their parents’ bank accounts, but I was truly grateful for their presence in what could seem quite a lonely new life at university. 

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In a parallel, more recent scenario, under the NHS’ care this last year I have met more incredible nurses, doctors and support staff than I could possibly ever thank individually. The jobsworths really are a rarity. Unfortunately, one of the first days out of surgery my nurse really failed to act. Could she not tell from hours of agonal cries that, my epidural having failed, paracetamol wasn’t quite taking the edge off open surgery recovery? I was a prisoner first to the disease, then to pain, and currently to weakness and incapacity. But the shore is now, at last, in sight.

Of all the NHS workers, without a doubt my favourite (and the only person who inspired me to enter a ‘Staff Star of the Month’ nomination) was once again a cleaner, named Dorota². Loud and always laughing, in her European drawl she would either call me ‘Darling’ or spoke ‘Jaack’ as if there was an extra vowel sound. I could have had more trips to the toilet in a night than minutes asleep and I’d still look forward to Dorota popping by for a little chinwag while she changed my bed. If I follow this kind lady’s endless excitable and enthusing advice, then my first fifteen holidays after recovering will all be to places I can’t pronounce in Poland. And I’ll be drinking lots of bison grass vodka with apple juice. One morning she got very confused as I was on speakerphone to the police³ and in the end just joined the conversation, with the now equally bemused officer, as I compiled a victim statement. 

Sorry if this has been a darker chapter than the others so far, but these last couple of weeks have been rougher than I ever could have envisaged. The surgery is done now and, after two weeks in Nightinhell, I left hospital this evening. The next tale finds me naked and aggressively whipped in a sauna by a curious (and equally naked) Latvian man, so stay tuned for some lighter entertainment…

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Footnotes

¹For fans of Only Fools, see Del Boy opening up about always being ‘Mr Happy’ here.  
²This name actually hasn’t been changed. 
³My bike was stolen the day before I was admitted to hospital. Sh*t happens.

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Next: Chapter 3: Cover Your Balls

Previous: Chapter 1: O Pato

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