Think of yourselves the way Christ Jesus thought of himself. He had equal status with God but didn’t think so much of himself that he had to cling to the advantages of that status no matter what. Not at all. When the time came, he set aside the privileges of deity and took on the status of a slave, became human! Having become human, he stayed human. It was an incredibly humbling process. He didn’t claim special privileges. Instead, he lived a selfless, obedient life and then died a selfless, obedient death—and the worst kind of death at that—a crucifixion. (Phil 2 – The Message)
Last Lent was a good one. I was preaching for our Lent Course, working hard at planning a massive service in St Paul’s Cathedral, and at weekends, my boyfriend and I would go for long walks in the park. I’d get up too late and run for the train – in February, I even did a spontaneous 5k Parkrun in 31 minutes. Sure, at that stage I was averaging 4 hours sleep a night, but there was nothing I wouldn’t do because of my illness.
Since then, it’s been a tough year. Things I have had to give up include:
Going to the cinema/walking in the park/playing the piano/dancing at parties/privacy in public places/connection in non-public places/running (for the bus)/clothes with buttons/shoes with heels/bracelets/umbrellas/being able to afford things/being able to ignore things/being found attractive/dates that are straightforward/anonymity/spontaneity/using regular-looking office equipment/creating a good first impression/going upstairs in boutique shops/having long hair/having long showers/exploring/church without physical pain/buffets/lectures/classical music/coffee/travelling light/carrying anything/the list goes on…
My illness is affecting every system in my body, and as a result, every activity I’d like to do. If you’d like to know why any of these aren’t possible, feel free to ask – or better still, help me do one of them again!
The new normal
A normal week for me will fit in 16 hours of work, where I try to remember what normal felt like, try not to shock my colleagues with stories of the latest attacks on disabled people that are preying on my mind, and battle through typing with sore hands and thinking with a sore head. But the rest of the time, what’s left after you take out what I can’t do any more, is being cooked for, washing, dressing and feeding myself, keeping on top of my laundry, and a lot of resting.
Resting is very dull. Anyone who says “I’d love a day off in bed” has failed to understand what three days off, every week, sometimes without the energy to do much more than breathe, feels like. When you’ve listened to and fallen asleep during anything vaguely watchable but not too complex on iPlayer, texted anyone you think might reply, rearranged pillows and you’re still in pain, researched the next trip you’ll make when you have energy, emailed venues six weeks in advance to see if you can get in, and made plans that go “it’s a nice day, I could go outside, that would be really lovely” and realised you haven’t the energy to take a blanket into the garden, there’s nothing more to do. And while social media is great company, it’s easy to see others complaining about situations you’d love to be in – just because they’re seeing something other than your own ceiling and the mess you haven’t the energy to tidy.
What this does in Lent
In Lent, sermons seem to be about denying ourselves, learning self-control, and not being greedy.
I don’t get to church every week, for obvious reasons – if I do anything on Saturday I’m risking lacking the energy or coordination to get out of the house – and church is early enough on a Sunday morning that I’ll still be in pain and rather sore even if I’ve rested well. When I get there, it’s noisy, uncomfortable, there are hymn books I can’t carry myself, steps without rails if I want to receive communion, and a disabled loo that smells of baby changing. Physically it’s not great, and to have tea afterwards requires such coordination with two crutches, no chairs and kids running around my ankles that it’s tempting not to bother.
And then there’s the people. Most are understanding, where they can be. It’s hard to build relationships on occasional attendance, or to connect with people who don’t have time for more than a passing word. There’s so much activism in the church – joining of rotas, socials, things to do – that I feel left out and as if they want me to feel guilty. On Sundays I just want to sit quietly, to pray, but not to be alone when I do that. There’s a saying, church is family. And just like that casually-racist grandparent who embarrasses themselves, church has those casually-ableist elders who say and do offensive things. They can be challenged, but there’s such a long stretch of them telling everyone you don’t know that you’re “touchy” that it’s hardly worth it.
Now that going to church makes me feel awful about myself, and I feel so little in common with other people there, it’s unsurprising that sermons aren’t hitting the spot either. They aren’t really for me. They’re for the normal people, the ones who earn enough to claim back Gift Aid.
Solidarity in the Wilderness
For me, this Lent, it’s been a great comfort to know that Christ suffered. Properly, really suffered – not just physically, a couple of days of torture – but emotionally too. He felt isolated, abandoned, and frustrated, particularly when his friends didn’t understand. He was used to depending on others’ hospitality for his meals. Overwhelmingly, he could see what his future held, and wasn’t looking forward to it!
I have felt isolated, abandoned and frustrated lying in bed, while Facebook shows that all my friends are together, having fun. I’ve been dependent on others to care for me. My present has been impoverished, by losing so many things that give me joy, as well as by gaining so much pain. I can’t help thinking it’s not meant to be like this. And I fear the future – in a year, will I still be able to walk? Earn enough to cover my outgoings? Express myself in a way that normal people can still relate to? Go out of the house on a regular basis? Lift cutlery, leave my bed, or wash unaided? And if not, what then?
My friend Jenny is far less well than I am, but with the same illness. If you have the time after my ramblings, please take the time to read her poem, Gethsemane. She articulates some of what I’m feeling this Holy Week – a gratitude that however bad this gets, we’re in good company, and we’re not giving up.