Coffee: elixir of life.

In the Kingdom of Overwhelm (writing about chronic illness)

I was leaving a party the other day and sharing hugs with friends, when one said, ‘Urhh!’ and flinched. This is my non-hugging friend. We get on, but she doesn’t enjoy hugs and I get it, because until recently, neither did I. And yet now I do, sort of, sometimes, with the right people at least.

I hated social hugging until a few years ago, when our family health deteriorated in one of those scary ways. By scary, I mean that when something horrible happens to someone else, we often seek reassurance that it won’t come to us next. So if someone cuts off a foot by dropping an axe on it, but we never pick up axes, we can sympathise without the dread of “Damn, that’ll be me next”.

Well, ours didn’t offer that reassurance.

Our health issues came in a way that we couldn’t have predicted, a way that didn’t tell us what might have caused them. We were non-smoking, healthy-eating, active people. We weren’t battered by poverty. We didn’t take illicit drugs. We maintained sensible bodyweights. We didn’t go sky-diving (OK, we went shark diving, but nothing bit us), eat out of the bin, or jump into the animal enclosures at the zoo. 

We ate, slept, worked, got paid, lived in a house, worked out, had the odd glass of wine, and enjoyed TV.

We were “normal”. We were lucky. We had no idea what was about to happen.  

One day we got sick. I say “we”. I say “sick”. Not all of this is my story to tell and I’m not going to share anyone else’s medical history, but over five years, between us we clocked over 10 operations, some minor and some pretty big.

Injured but not ill, I emerged with a clean bill of health (after spending half of 2016 unable to stand up straight, and over a year of training to be able to run properly). Another one of us wasn’t so lucky and we are now, as a family, hobbled by a chronic, debilitating illness.

Most illnesses end after a while, but when they don’t, life shrinks. Anyone who has been in this situation will know how the walls close in; how your old horizons slide out of reach, and isolation becomes the enemy. You can’t travel any more, for work or pleasure, either together (they can’t) or alone (they need you). You can’t have people to dinner when one person is ill. You can’t go out (who’d like to babysit my sick adult?). On the worst days, even nipping out for milk becomes a logistical juggle, and the day the car breaks down is a whole fresh hell.

At first, maybe you just you accommodate the restrictions. Business trips become teleconferences. Dinners become coffees and then Skype chats. Your social and career options slither away, one by one, and you have no ethical choice but to let them go. ‘For now,’ you tell yourself, watching the years slip away, watching others get promoted for work that you’d give your eye teeth to enjoy, and then gallop on to after-work parties and weekends away with friends.

Meanwhile, you’re stuck together behind closed doors, one in pain and the other unable to help, annoying each other. (Sick people don’t turn into saints. Neither do the people looking after them.)

You try to hold onto what you still have. You relocate as much work as you can to your home office to maximise your hours, so if you lose a day to mopping brows, you can burn the midnight oil or wake pre-dawn to catch up. Working alone, you get a lot done, but it’s hard to feel confident without a team. You miss colleagues.

You take on some local volunteer work to keep yourself grounded. It helps. It’s fun and the people are brilliant, but they don’t always want you. The volunteer role is expendable and costly: you buy professional people’s company by giving unpaid time that you can ill afford, you put in the effort to learn but never become trained or qualified, and while some days you kid yourself that you almost belong somewhere, more often it reminds you that you don’t. It’s nice to give something back to the community, but you need to look elsewhere for your own needs.

You look at further education and training to broaden your flexibility, but few courses are compatible with hospital emergencies. You knew that already, but even though it’s like staring at a tantalus, you keep looking. When you find a course that would allow you to work mostly in your own time, they say that you’re a mature graduate so you’d have to pay tuition fees. You calculate the cost of no-income-plus-tuition-fees for three years and struggle to justify the expense to your family. You resume your paid work instead, for your children’s sake. Your inner optimist buys a lottery ticket.

(You learn to love your inner optimist; she becomes your confidante and best friend because when everyone real is sick or sad, she smiles. She’s an idiot but it doesn’t matter; you don’t need her to be clever, you only need her to be unbreakable.)

There are reprieves. Lulls in the illness that allow you to hurl yourself into work projects, finishing them in record time (racing the fear of the next emergency). You work eighteen-hour days while your house grows dusty. You find yourself pairing small socks at 2am, and they still make you smile.

Sometimes people reach out to include you in projects, go the extra mile to flex around your commitments. These are your heroes, and you love them with a ferocious loyalty as you reclaim a shred of self-worth. Hard work is a soothing and healing process; immersion in something other than yourself a blessed relief. You promise yourself you’ll repay these people, when better days allow you to thank them.

Other people exclude you. ‘They probably won’t cope with extra work,’ they assume, compounding your losses by projecting their own weakness; underestimating you. As if somehow you’re no longer driven, ambitious, qualified, strong, or intelligent. You wonder if you should explain, but don‘t. You wonder how someone so weak came to have the power to exclude you, and whether they enjoyed it? You turn to fiction, write them into a short story in which they fall down a hole and are eaten by worms. It gets published.

Then a second person falls ill, reminding you that one illness is no protection against another. Now you’re needed in two places at once, and it’s neither a metaphor nor an exaggeration: you are truly needed in two places, at once. You cancel every single remaining engagement in your diary. You remind yourself that it’s not forever and you don’t cry. You stay awake a lot. Not “worrying”, but holding one person, holding another, and then, while they sleep, putting the dishes away, folding clothes, organising income, finishing work. And finally, writing – your reprieve at the end of a long shift. Your eyes sting as you meet dawn from the wrong end.

Someone says, ‘You need sleep.’ You agree, but putting the dishes away isn’t about the dishes: it’s about sanity and normality and resistance. Plus it’s about hygiene and breakfast because damn, you can’t have anyone else get sick. But mostly it’s about resistance.

This is the Kingdom of Overwhelm, and this is where I learned to hug people. Not squidgy hugs – not emotional clings; I haven’t reached that point yet. More the sporty kind. The nudge-an-arm kind of “hiya” that serves to remind you that there are 7 billion people out there, all facing their own challenges, so we’re not as alone as we might fear.

Where I live, everyone knows each other. Walking through a crowd can feel like being Tarzan, swinging from tree to tree — first a friend leans on you, then someone presses your wrist for attention, or drops an arm onto your shoulder, and a kid will grab your hand or clamber onto your back. (The really tiny ones may even wipe their faces on your clothes – yey!) Everyone says, ‘All right,’ which serves as both question and answer. 

Everyone says, ‘All right,’ which serves as both question and answer.

A few years ago, decked out in a suit and a stand-offish smile, I would never have seen this coming. Now, I’m grateful. Of course, what feels like tiny warmths might just signal people noticing that I look rough as hell; maybe they’re steering the gormless woman out of their path, or checking I’m still breathing. Still, they remind me that there is a wealth of humanity out there and that even if I can’t always reach them, they haven’t vanished. And they’re not going to.

Occasionally people meet me in the Kingdom of Overwhelm – I bump into friends there, smiling tired smiles and sighing over the wreckage of an unkempt house while holding out a bandaged arm, or divorce papers, or invoices and bank statements. Then we drink too-strong coffee, eat cake and remind each other that Overwhelm is just a place.

That we can leave.

 

6 comments

  1. Chris says:

    Sorry to hear you are living in the Kingdom of Overwhelm. I know it well. If I lived closer, I’d visit with a thermos of too-strong coffee and your favourite kind of cake.
    Hugs (non-squishy variety)

    • TU says:

      Thanks, Chris, I think we all end up here at some point, obviously it’s my turn. Too-strong-coffee and good company is always very welcome!

    • TU says:

      Thanks and sorry to hear that, Susan. I think everyone goes through this kind of thing at some point, but not sure if that makes it any easier.

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