I’d like to thank…

I’ve just been on holiday. I had an amazing time. And I couldn’t have done it alone.

In a testament to just how much our Church loves each other, and how far I’ve come in relinquishing my stubborn independence in order to actually achieve anything, I’d like to say some thank yous.

Before I went:

Eight weeks of gradual planning and packing meant that I wasn’t too drained to travel. I’d like to thank my sister, for lending me a tent, and Ruth for coming over to help put it up. Dave and Amy for congratulating me on wrestling it back into the bag by myself. My Dad for lending me his tin box of useful camping things, with which I fed people, lent guy ropes, pegs, and generally kept other people warm and dry. My Mum for cooking for me in the week I was packing, and taking me shopping for food. Also for her heaps of encouragement. But then you’d expect that from family.

I’d like to thank my landlord and landlady for lending me a stove, ice box and gas, and for calling their friend Charles who had a kettle and brought it round specially. Thanks go to my physio for talking me through the energy I’d need for different things, helping push through the wheelchair assessment, and checking up that I wasn’t exhausting myself. And to the lady whose wheelchair I eventually bought, who completed the sale while attached to an oxygen machine, and whose parents drove her home in order to do so. Thanks go to Lee, the EPC manager who couriered parts to me in time for me to attach them, and the bike shop guys on my road for having a look at my spokes.

I’d like to thank the staff at Momentum, especially Sam who handled my booking, and all who answered my trivial questions carefully.

And for moral support, particular thanks go to Sally and Clare (also baker of flapjack, pray-er and wheelie skills helper) on twitter, and numerous other encouragers. At church, our student worker reacted just right, by getting to know me first and my care needs second. Then came naturally to the conclusion that if our church couldn’t look after each other, there was something wrong with the way we were doing church. I was emboldened.

When I got there:

Pete’s Dad Dave, who picked me up on the morning we left, and dodged traffic to get us to the meeting point on time. Pete for driving, Anna and Joe for letting me have the front seat when they were so squashed they couldn’t get into their own pockets. Anna W for coordinating it all. Ellie and Matt for making my packed lunch (with which we fed three people), and Samuel (4) for jumping up and down when I arrived at their house. Also thanks to the family for their spare key, and the backup plan of a bed and shower if I needed it.

Then I was safely in the care of my church group, a selection of 30 students and young (or not so young) adults, of whom I’d met five before. Thanks go to the tent putter-uppers, Nick, Martin and Ian; the chefs and food preparers, Imogen, Ben, and Naomi; those who brought me just what I needed and exactly how I’d asked for it. Thanks to those who did my washing up without questioning why, who bought food and planned for meals to just be there for me, and the girl who made me hot tea at 7am in the rain. Thanks to the people who pushed my wheelchair; Andy, Danny, Martin, Jenni and others, and to Ed for holding an umbrella over me while they did so.

When I collapsed, particular thanks go to Anna T for noticing what was wrong, following instructions, and holding my head up while I drank Andy’s squash. To Naomi for fetching Ian’s jumper and making me comfortable. To Andy for not freaking out and timing my collapse (33 minutes 45 seconds).

The isolation can be particularly tough, so thanks to Ian for asking good questions and listening, to Cameron for being up early enough that I wasn’t doing physio exercises alone, to Andy for speaking the truth when I was doubting, and to Becs, who gave me a hug when everyone went dancing and I couldn’t join in.

In worship, I love to hold my hands in the air, jump and dance. Thanks to Basil, Toby, and the effortlessly cool East London guys for dancing so that I didn’t have to, to Christian, Pippa and Hannah for singing so beautifully I felt heard when I was too tired to sing. Between us, the worship I wanted to bring was offered up from our church. And thanks to everyone in front of me who refrained from putting their hands up so that I could see the words. Thanks to those who prayed for me – the prophetic words and pictures seem to form part of a bigger picture, and it’s a beautiful and exciting one.

And to my friends from home, a big thank you to Rich and Dave for a very normal chat over hot chocolate like the good old days, a cheeky thanks to Rich for letting me steal his coffee to warm my hands on while I was in the shower queue, and amazing gratitude to Dave for going out from his parent’s house to buy me new wellies. If you don’t use walking boots for two years, they disintegrate entirely, soles first. Who knew?!

And afterwards?

I still had to endure a few lonely days’ bedrest with laughable amounts of pain. But the overall effect of the holiday was transformative. With this support team of around fifty people to share the load, it’s easy to move from feeling 100% disabled to only 2% disabled, which is hardly disabled at all. An amazing relief, and a window of respite from a tough few months of missing out. The sermon at church today was based on Philippians 4:10-23 – the bit where Paul talks about being content in all situations. It might be easy to imagine that I’d be more content with my life if I wasn’t ill all the time, but to my delight, as I closed my eyes to imagine the place I felt content, and found it was exactly where I was sitting. The preacher spoke of pain being measurably easier to bear when one isn’t alone, and of the encouragement of doing life alongside other people, just as Paul encouraged his church in Philippi and was supported by them. Of weak people being made strong through the embodiment of Christ’s love, the Church.

With the extended Church to support me in this way, physically, emotionally and spiritually, and with the certain hope of a time to come when there will, finally, at last, be no more pain, I have found I am able to be content with what I have.


Giving up for Lent

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.