Giving up for Lent

It’s Ash Wednesday. Last night, a flurry of status updates marked the annual Exodus of Christians from Twitter and Facebook. And I was cross.

Give up chocolate, give up TV, give up reading the comments sections below Daily Mail articles, but don’t give up social media.

Because we consume those things, but we don’t consume twitter. Other people’s lives and our interaction with them isn’t a commodity to be cast aside when we deem that they take up too much of our time. It is, or should be, mutually giving, a place where we share something of ourselves, and influence the online culture around us. During Lent, Facebook gets markedly more mean. The self-righteousness with which Christians are happy to say “all that time I’ve been supporting people whose statuses send up warning flags, act as an arbiter in hurtful wall discussions, or just say something kind about the kids of a struggling young mum, that was all a waste – I’m off to do significant and holy things now.” The fragrance of Jesus is notable by its absence, and in its place, profile photos are changed to crosses.

One of my most supportive friends is a lady I know only through twitter. Her child is profoundly disabled, so she gets the frustrations of daily life, the pain, the drugs, the attitude of doctors, and I like to think I understand her too. It’s not an intense friendship, but the constant stream of two-way support and affirmation every day or so makes our lives more bearable. On this, the first housebound day when I know she’s not on twitter to listen, I feel a sense of loss.

Social media is a virtual space, but the human interactions are real. The relationships are real. The impression that people give, when you see them throughout their day, shows a picture of their character that is different from what you’d see in conventional, face-to-face interaction, but is nevertheless a window into their character and aspirations. Through twitter I’ve met friends across the globe, some with whom I share very little in common, and others who have surprised me with our similarity in outlook. It takes the power of storytelling away from corporate mass media, and puts it in the voices of ordinary people.

If anything, we should, in Lent, look to be more present to our online community, pray for it, look to serve it, and be present and authentic in a new way. It’s not a corrupt and oppressive Egypt we’re fleeing for a promised land of digital isolation.

Sunday

It’s normal for me to spend the whole weekend saving up the energy to go to church on Sunday. This weekend I did just that, spending an agonising and isolated Saturday too sick to get up, to do anything, even call anyone. I was withdrawn, quiet, shy, I felt cut off from what everyone else was enjoying. But when Sunday came…

“Present your bodies as a living sacrifice, holy and pleasing to God.” was the verse shared from the front. God doesn’t care that my body twitches, aches, fails at a lot of things and is not the socially accepted norm. I just need to be ready to do what He calls me to, and my body pleases him. This acceptance is amazing. During the lunchtime seminar, I spent much of the time sat on the floor sorting out my back pain, but this didn’t bother the speaker. To him, disability is not the only part of my identity; he’s able to hold in tension both the concept that I’m weak and in pain, but also that I’m irritatingly over-keen and loud in seminars. Kid gloves around my illness don’t prevent him from shutting me up.

I can get so used to the habitual isolation that I don’t know what to say – the simplest question stalls me. In comparison to Saturday’s silence, Sunday was awash with conversation, small talk, smiles. Even before I arrived, I bumped into someone who knew me by name. Then I had tea with three other people, who cared about what I’d been up to.  And others afterwards. Comparisons of the CofE and MoJ governance structures and their agility, muscle pain advice (I am so knowledgeable…), the near-overwhelming desire to swim in the tank with the fish. (I met a toddler and his parents; the toddler was entirely unawkward around my wheelchair, so his parents were too.)

This week I’d come off the welcome team rota, because I felt it was the right thing to do, despite my guilt. And the opportunity arose, when I would have ordinarily been in the team meeting, to have coffee with two women who are exploring faith, and who’d been to the same seminar as me. An hour or more of puzzling through questions together, sharing stories of our faith journeys, and getting to know two thoroughly lovely people who I’ll see again. I may not have the stamina for any of the official jobs, but God’s opening up ways I can welcome, befriend, and use the theological training I’ve had to good effect.

In the second service, I braved the stairs and sat beside one of my closest friends. We’re in an accountability group together, so despite not knowing her long, I know her well. Without having to say anything, just the physical closeness of sitting next to someone after so long completely alone is a comfort. When the light triggered my leg spasms, she wasn’t alarmed. When she spoke to a new person after the service, she knew to check if I was too tired to meet someone rather than go ahead and make the introduction. There are a few people now who know me well enough that my myriad symptoms don’t surprise them – it’s healing to be around them.

Prayer ministry felt safe, for the first time in forever. The prayer for healing that I didn’t ask for (which is inevitable if you’re visibly sick) came with questions about what I felt God was doing, what a new opportunity or hope might look like. She listened when I talked about how I experienced healing in the non-medical sense. Asked if there was anything she could do. I felt respected and cared for. We’re standing together wondering at God’s purpose in all of this, and she was content not to push for a simple explanation. There are still trust issues that I’ll eventually break through around being prayed for, but to have a positive experience was very welcome.

I’ve had a tough couple of months, and after the service I was able to talk to a friend at some length. Isolation seems to fill my heart with many sentences formed but left unsaid. I know myself, I know how and why I am struggling, I can see how each thought has originated and snowballed. But all the self-comprehension in the world doesn’t make it less tough; to articulate the core frustrations of my life to someone who’ll listen without pitying, ask in order to understand not to belittle, and who’s tactful enough to keep concepts abstract and avoid prying, that’s what eases the burden. I can carry it, but I do need somebody else to understand how heavy it is.

I’ve shared this, I think, because it’s easy to lose sight of Sunday in the pain and isolation of housebound days. I know that people care, even if they aren’t showing it on weekdays when I’m sick in bed and they’re in the office. And I’m not convinced that church is just about unbelievers coming to faith, but the whole family of God living in a way that redeems and transforms a broken life and sustains and strengthens it to return to the fight.

Conserving emotional energy

In pacing myself, medics have explained the three types of energy; physical, mental and emotional.

By far the toughest of the three types of energy to stop yourself from using is emotional energy, so here are some handy tips on how to manage, or dampen, your emotions:

  1. Go to church. Avoiding church might make you feel sad, or hopeless. But while not standing and lifting up your hands, and not thinking about the sermon, you must not emotionally engage with the worship. Compassion for those on the prayer list, or joy at the wonder of grace, are not allowed.
  2. Watch television. Avoiding it would allow your mind to wander – you may start to ruminate. But while not watching anything too interesting, requiring thought, be sure not to empathise with any characters, and select dramas where their emotional range is limited. Doctors, or another daytime soap, is preferable to weepy chick flicks, or a high octane drama.
  3. See your friends. Avoiding them would make you feel isolated. But be sure to disengage if the conversation goes anywhere deep, and to talk about yourself in as detached a way as possible. They may wish to feel sad or angry on your behalf, but don’t feel those things yourself. Avoid weddings, new babies, or anything too celebratory.
  4. Keep up with disability news. Avoiding it would risk being ill-informed about the things that affect you. But while reading about people tipped from wheelchairs by gangs, starving in waits for assessments, or dying of the illness you have, don’t fear. You haven’t the energy for worry, even if it is legitimate.
  5. Meet attractive people. Avoiding them would risk the self-pitying imaginings of a life without romance. But don’t sense the attraction, excitement or anticipation, these are too extravagant. Flirt without hopefulness, dance without joy.

Do not feel. Do not feel anything. A beige, bland numbness is ideal – floating through life with the detachment of an automaton. Any deviation from this will bring overwhelming pain, but you may not cry. Drugs are there to assist your apathy, but not cure you. Expect to be disbelieved when explaining these limits because you don’t look “very upset”. Upset is a luxury for those with enough energy to waste on feelings.

Self-control, patience and perseverance are virtues we undervalue. You will have these in abundance. People will still undervalue them.

Taking one for the team

Three things have happened recently:

New statistics about disability hate-crime

I listened to a brilliant radio programme on 5 live, highlighting the new information that police are failing to recognise attacks made on disabled people as hate crimes. On many occasions, disabled people have been targeted simply because of their disability, but when the crime is recorded that information is missed out. It’s significant for two reasons – one is that for disabled people an attack may take far longer to recover from because of their pre-existing condition – but the other is that, along with racially-motivated crimes and others based on a person’s protected characteristics, disability hate crime carries heavier sentencing than an equivalent assault carried out at random. The programme stated that society is at the same place now with disability hate crime that we were with racially-motivated crimes 21 years ago, before the murder of Stephen Lawrence.

It’s completely usual to experience ableist abuse or attitudes every time you go out. But culturally, people don’t currently stand up for the disabled person being insulted in the way that they would if, for example, racist or homophobic abuse was taking place. And often people are unaware that language being used is offensive – there’s a lack of education in the population at large as to what constitutes inappropriate behaviour.

The programme is available on iPlayer here: http://www.bbc.co.uk/programmes/b04hmrv1

The homophobic hate-crime story on Doctors

Don’t judge me, I watch Doctors. A current storyline is that of Mandy, a nurse in the regular cast, and Catriona, a woman she meets at a nightclub.  As they’re leaving the club, they kiss in the car park, and a gang of girls shout insults at them, calling them disgusting. They wait until Catriona is leaving, alone, then surround her, drag her to the ground and begin to beat her up, until Mandy steps in and stops them. She’s left hurt and shaken.

That’s alarming in itself, but what’s more worrying is the attitude of those they speak to afterwards. The club bouncers don’t help to patch them up or call a taxi. The police don’t believe their story, putting it down to a bit of argy bargy at chucking out time, rather than the hate crime it was. They hold Catriona as responsible as the gang for provoking the assault, and say that as her injuries aren’t very serious, the crime’s not worth pursuing.  The hate crime unit are nowhere to be seen.

Experiencing aggression at church

On my first week on the welcome team at church, I was chatting to a new person after the service, and when we’d talked a while, was taking them through the crowd to meet one of our staff. At this point, a hand tapped my wheelchair. “You, stop, what do you suffer with?” the man said, aggressively positioning his body across mine, so I couldn’t move forward, and his face was bent over me, inches from mine. “I don’t ‘suffer with’ anything” I said. “You know what I mean, why are you in a wheelchair?” Slightly taken aback, I said “I don’t discuss my medical information with people I’ve never met.” “So there is something wrong with you… you have to take this.”

He forced a ripped piece of card at me. “I don’t want to take that, thank you.” I said. He said that I had to go to this website, and I had to take the piece of card. By this stage he was getting more aggressive and I just wanted to get away – the new person I was “welcoming” was growing increasingly uncomfortable. It was clear he wouldn’t let me move until I accepted his “help”. I took the card, and got away as quickly as I could. It contained a URL, an email address, and some other writing. I put it straight in the bin.

Concerning. Concerning that he had those preconceptions about disability. Concerning that nobody stepped in to check I was ok. When I mentioned it to one of the elders, he said it was good that I’d been the one to speak this odd visitor, rather than, say, a fresher student. I’d protected everyone else from having to talk to him. But that day at church, I was the only visibly disabled person there – of course an ableist was going to single me out.

But how does it make you feel?

The incident at church was ten days ago, but I still feel pretty shaken up. I’ve had nightmares. I purposely keep my push-handles tucked away on my chair, so that I can’t be tipped over, or pushed when I don’t want it. But in the nightmare, the man gets increasingly aggressive, and pushes me to the ground. I get surrounded. When I’m asking for the police to be called, the crowd are telling me to forgive him and to stop being a victim, and I’m going into a relapse. Someone says “if she can’t look after herself, maybe she shouldn’t have come out”. Someone else tells the man what’s “wrong with me” but it’s clear neither of them believe I’m really ill. I can’t speak or move, because it’s a relapse. People start to carry me somewhere, even though they’re hurting me by doing so. The police arrive when I’m too exhausted to think what happened, and people assume I provoked it, as this never happened before we had wheelchairs here.

I think the overwhelming feeling from this experience of aggression was one of being silenced. I felt somehow responsible, ashamed, as if I couldn’t speak to anyone about it. As if, somehow, by being openly disabled in public, I should be able to take the insults and aggression that come with it. That the fact that he probably meant well should make it any less hurtful. That in a nice church, this wouldn’t happen, so it’d be wrong of me to say that it had. It’s going to take a while to heal properly, and it’s going to take courage to go back to the welcome team this week.

After that, I don’t know.

On charities and knitting

I feel like it’s all our fault. Mine is one of the charities that actually do knitting. We’re giving you all a bad name.

I first met community-based knitting as a charity-run activity during the Olympics, when I spent quite a few afternoons with a church in Hackney. In their estate there’s a public square, with benches, flowerbeds etc, and rows of shops around the outside. It was here that they started. Just low-key at first, providing some wool and knitting needles, with a handful of residents who could knit to start people off. Small groups would gather, knit, chat, enjoy the sunshine. But in this context, it worked.

  • Knitting sessions gave the adults (and sometimes the kids) in the community an excuse to sit out on the square in the summer. Reclaim territory, keep an eye on their kids. You can’t sit on a bench alone in public, that’s just odd. But while knitting… well, that’s completely normal.
  • It gave older people a context to teach and to be valued for their skills. In a place where retired women are often vulnerable, seeing younger adults learn from and listen to their elders was beautiful.
  • It reestablished a sense of family. For many on the estate, London isn’t where they grew up, and they’ve lost many extended family in moving. The grandmother who reassures you as a new mum, the uncle who can lend a hand with DIY, all of that is lost when families are upended and have little choice of where housing is provided for them. An activity that helps communities get to know each other and build trust is essential.
  • It taught a new skill. Needlecraft fell off the school syllabus decades ago, so to teach my generation and younger how to care for their clothes opened up choices to them that this throwaway-fashion culture doesn’t afford.
  • It introduced a communal but also individual activity. It’s so easy to spend your free time attached to screens, ignoring those around you. A calming, creative hobby where the mind is engaged does wonders for your mental health.

So yes, we will go back to our knitting. Until our communal spaces are safe, our elders are valued, our families are supported, people have warm clothes and good mental health, we’ll continue. But if you think for a minute that any of those issues aren’t political – policing, welfare, housing, health provision or basic human dignity – then you best think again.

Learning to love again

You’ve probably heard of the five love languages. But what happens when you lose your ability to use the language that comes most naturally and need to communicate using other ways?

The theory goes that there are five ways by which we might show or feel affection; physical touch, presents and gifts, words of affirmation, quality time and acts of service. Most people will have one primary language that resonates with them, and the language by which you feel loved isn’t necessarily the same as the one by which you show people you care about them.

For me, I’ve primarily shown people that they matter by spending quality time with them. I’m the one in our family who initiates the phonecalls, for example. My secondary language, and the one I’d tend to show in less familial settings, is acts of service. So it’d be very natural for me to respond to a colleague under pressure by making them tea or getting the printer working for them, rather than encouraging them to keep going. But these methods doesn’t always work.

Not quality time

Recently I’d been looking forward to a houseparty because it afforded the opportunity of spending quality time with one of my friends. She lives hours away and we rarely see each other, but when we do it’s brilliant. We both arrived about 2pm, and she had until 5pm before she needed to find a train home. So far, so good. But as I arrived, I felt very sick, and spent the next 90 minutes or so vomiting violently and feeling very dizzy and faint. By the time I surfaced into the party, I was pale and shaking, my time didn’t have much quality to it! We chatted while I worked myself up to some dry toast, but the opportunity to reconnect was lost.

Giving gifts doesn’t come naturally to me at all; I find it awkward and uncomfortable. (I’ve previously bought gifts for people, only to bottle out from handing them over.) But I remembered that my friend had mentioned at the party that she was getting a new bike, to replace the one that was crushed in her horrific road accident. So I decided to send her a bicycle bell in the post, painted with her name, to show my support for her getting back on the roads after her injuries. To me it didn’t feel the same as the quality time we’d lost, but I think it made her happy.

Not acts of service

This one’s obvious – I have very little physical energy. To spend that energy on serving someone else would probably mean I couldn’t safely get myself home, or chew and digest my food. So as much as I wanted to care for my friends while camping by sorting out their tents, making them food, or washing up, it would just have been foolish. Clumsily, I started trying to use words of affirmation to build them up, complimenting the way they did things. But I’m naturally quite cynical, and find it hard to say nice things without wondering if I sound disingenuous!

Conversely, I’ve never felt particularly loved when people do things for me, despite how often they do. I’d much rather have a hug or a present. So I can easily and almost physically remember from my holiday the two times somebody hugged me that weren’t just to say goodbye, the hands that helped me up, and the four times somebody brought me something (hot chocolate, wellies, lunch, hot chocolate again). The value of these gifts needn’t be significant (80p, £10 which I reimbursed, free, 80p again) and it doesn’t matter if I asked for them first. Maybe it’s a second child thing, but when somebody brings me something they’ve got just for me, I’m overwhelmed.

Which languages are being spoken to you?

You can’t always choose how people care for you. Now I have physical and obvious care needs, lots of people do small acts of service for me. But I’m rarely hugged – crutches or my wheelchair kind of get in the way. I spend most of my time alone, resting, so quality time with others is hard to come by – I lack the stamina for it. Twitter is odd, in that all of those friendships are built solely on words of affirmation, as no other language is possible. But it’s still a place of real friendship.

In the last few weeks, I’ve tried to be more conscious of the ways in which I am loved, to be thankful for them, and for my friends and family. I’ve tried to show friends I care by being generous with gifts and praise, rather than giving up because I can’t find the words in my native love language. This loss of eloquence is a side of my illness that I never realised would be so disabling.

How has it been for you? If you’ve acquired a disability, has that changed the ways you’re able to care for people? Or if you don’t have one, in what environments are you more or less comfortable in expressing affection for your friends and family?

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.