In the Kingdom of Overwhelm (writing about chronic illness)

A few years ago, our family health deteriorated in a scary way. By scary, I mean that there was no predicting or controlling it; I can’t show this to you and say, ‘This is how to avoid it.’ We were non-smoking, healthy-eating, active people. We weren’t battered by poverty. We didn’t take illicit drugs. We didn’t go sky-diving*, eat out of the bin, or jump into the animal enclosures at the zoo. We ate well, slept, worked, got paid, lived in a house, worked out, had the odd glass of wine, and enjoyed TV.

(*We went shark diving, but nothing bit us.) 

We were “normal”. We were lucky. We had no idea that over the next few years, I’d need nine medical procedures, and someone else would be diagnosed with an incurable, debilitating illness.

Most illnesses end after a while, but when they don’t, life shrinks.

Anyone who’s been told that (i) they’re ill and (ii) it’s not going to get better will know how quickly horizons slide out of reach, preservation becomes a mantra, and isolation becomes the enemy.

Career options slither away, even as the healthy carer. You can’t travel either together (they can’t) or alone (they need you). Business trips become teleconferences; dinners become coffees, then Skype. You watch others get promoted for work that you’d give your eye teeth to do, but you can’t commit to the hours in case you need a short-notice day at home, caring.

Your social life becomes antisocial. Other couples walk hand-in-hand, while you’re stuck together behind closed doors, annoying each other. (Sick people don’t turn into saints. Neither do the people looking after them.) You cancel dinner plans more often than you make them, and watch the invitations decline with a mixture of grief and relief.

You cling to what you still have. You set up a home office, so if you lose hours to mopping brows, you can catch up pre-dawn. You might miss colleagues, but you can still pay the bills. The work hours become harder to fit in; 6:30am rise becomes 6am, 5:30am, 5am as the caring hours increase. Costs increase; you hire a gardener, a window-cleaner — to save time. Now you have to work harder to pay for them: up at 4:30am. 4am is, it turns out, just too early.

You take on local volunteer work to keep yourself grounded. It helps; it’s fun and the people are brilliant, but the volunteer role is costly: you buy professional people’s company by giving unpaid time you can’t afford, you work and learn but never become trained or qualified, and just when you’re desperate to belong somewhere, the staff go on team-building days and you don’t. It’s nice to give something to the community, but it hurts to feel even more of an outsider.

You check out further education and new career opportunities, through the lens of regular hospital emergencies. It’s a tantalus but still you look. When you find the perfect course, they say that you’re a graduate so you’d have to pay tuition fees. You look at your growing children and resume paid work. Your inner optimist buys a lottery ticket (your inner optimist is an idiot but you love her).

There are reprieves. Lulls that allow you to hurl yourself into work projects, finishing them in record time because you’re geared up for urgency. You work twelve-hour days and pair small socks at 2am; their cuteness still makes 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 fiercely as you reclaim a shred of self-worth. Hard work is soothing and healing; immersion in something other than yourself a blessed relief. You’ll repay these people with lifelong loyalty.

Other people exclude you. ‘You might struggle to cope with caring AND work,’ they assume, compounding your losses by projecting their own weakness; underestimating you, as if somehow you’re no longer driven, ambitious, qualified, strong, capable, or intelligent. You don’t take the time to explain that this stuff has already taught you agility and resilience in bucketloads – because you’re too busy hunting for braver people to work with, because it’s an awkward conversation and because even though you’re angry, you know that, ‘You’re not capable of judging me, because I’m stronger than you can imagine,’ isn’t going to penetrate. 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.

A second person falls ill, reminding you that one family illness is no protection against another. You stay awake for days, holding one person, holding another, and then, while they sleep, putting the dishes away, folding clothes, organising income, finishing work — 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 self-respect and normality and resistance. Plus it’s about hygiene and breakfast because you can’t have anyone else get sick. But mostly it’s about resistance.

Part of you becomes fierce. When you finally get a spare half-day, you run up a mountain, fuelled by anger, pride, and muscles that grew the hard way. The physical exertion takes the edge off the pain and leaves you feeling stronger. You stand on the summit and feel the exhilaration, the hope: for a moment, you’re the lead character in your own life and on your way to a happy ending. But you’ve watched the nature programmes; you know there’s no guarantee of a happy ending.

This is the Kingdom of Overwhelm, a place I only ever visited once or twice before all the illness, but which now feels like a strange, cold overlay on a previously-friendly home turf.

[perfectpullquote align=”right” bordertop=”false” cite=”” link=”” color=”” class=”” size=”20px”]Everyone says, ‘All right,’ which serves as both question and answer.[/perfectpullquote]Luckily, where I live, everyone knows each other. Walking down the street is a series of wrist-grabs and arm-bumps. It’s nice. Everyone says, ‘All right,’ which serves as both question and answer.

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 will leave.

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