My nasogastric feeding tube is a prominent fixture on my face. With loops around my ear and tunnels up my nose, I often expect stares.
I even expect a minority to sheepishly ask questions – I’d prefer them to mind their own business, but curiosity isn’t a crime.
What I didn’t expect was for a stranger to suddenly appear behind me in B&M last summer and ask me ‘How old are you supposed to be, with a cartoon sticker on your face like that?’ Her brazen disregard for something so personal caught me with my guard all the way down.
A range of autoimmune complications mean I have no choice: the tube is attached to a pump that administers enteral feeds and keeps me alive. The ‘cartoon sticker’ on my cheek ensures the tube doesn’t dislodge in my throat and enter my lungs. I’m not sure why she thought I was playing a childish prank.
As you’ve no doubt deduced, I’m denied any privacy or modesty when I’m outside. My tube is simultaneously the world’s best and worst icebreaker. Before lockdown, adults rubbernecked whenever they passed me in the street, always thinking I didn’t notice. I bumped into friends I hadn’t seen in years and their eyes always begged me to mention it first.
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The shop incident isn’t solely responsible for my insecurities about the hardware I had installed 15 months ago, but it is the most prominent. It’s the event that my mind has replayed the most over the previous few months when there’s been nobody outside to stare at me.
I initially felt relieved during the early weeks of lockdown. It was refreshing to venture outdoors and not have hundreds of prying eyes lingering on me. By June, I’d forgotten how vigilant I’d once been when it came to the public’s gaze while on the high street or in a packed cinema.
The eventual easing of lockdown measures in my local area also meant face masks were compulsory, which was great for me since they hide my tube completely.
I spent several hours at my local shopping precinct on that July weekend when lockdown restrictions were first eased in the UK without inviting so much as a fleeting inappropriate glance. It was liberating.
But my relief is always followed by guilt. Why is it that I should benefit from the effects of a global pandemic, while all around me people are experiencing loss, dependence, and health anxiety – feelings I know all too well – on an unprecedented scale? It’s been uncomfortable to derive any enjoyment whatsoever from this period.
And for the first time ever, feeding tubes have appeared on my Twitter timeline. Sadly, not because of well-meaning hashtags or awareness weeks, but because thousands of hospitalised Covid-19 patients are currently being fed by them.
I sometimes wonder if people will see me in the future and think I was one of the unlucky few they saw on the news, who wound up in intensive care, required enteral feeding, and just got stuck with it.
Another epidemic seems to be gearing itself up: a new wave of chronically ill people in need of regular healthcare. I don’t think anybody knows what’s around the corner for those people.
I’ve also taken a somewhat morbid interest in watching ordinarily active and healthy people reluctantly adapt to lockdown life and refer to it as the ‘new normal’, simply because I spent my late teens living through the same stages of denial, bargaining, and acceptance as illness eroded my life.
This ‘new normal’ has been my constant since I was 19, and it’s heartbreaking to see thousands of others forced through the same experiences.
And as some patients ‘recover’ from Covid-19 but report symptoms of post-viral fatigue (PVFS) and postural tachycardia syndrome, another epidemic seems to be gearing itself up: a new wave of chronically ill people in need of regular healthcare. I don’t think anybody knows what’s around the corner for those people.
But I’m mostly frustrated that my positive experiences during lockdown have only papered over the cracks in my mental health. However far away it might seem, a day will come when face masks are no longer compulsory and the wandering eyes of random strangers will follow me down the street again.
Someone will inevitably catch me with my guard down once more.
Truthfully, I’ve appreciated the secrecy of lockdown more than I have the modesty. I’ve been able to choose whether my nasogastric tube is an icebreaker, or whether Facebook friends are aware of my health problems. But I’m left wondering whether being able to selectively avoid my insecurities has done me much good.
I want to believe that, after experiencing intense health anxiety as a global community, we’ll be less presumptive when discussing peoples’ various ailments.
And I’d like to step into this uncertain new world feeling okay with being the boy with a cartoon sticker.
It’s who I am, whether I like it or not.
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