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.

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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.

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.

How do you ignore these things?

1. A well-timed day off 2. Marmite 3. Electric blanket
That last tweet may lead you, rightly, to surmise that my rest day was spent asleep in a warmed bed, waking only for marmite sandwiches.

@eah39 but you still found 3 good things 🙂 hope tomorrow is better

Today was pretty good, if you ignore leg pain, missing an interesting talk on social enterprise, and being to drowsy to skype!
@eah39 and how able are you to ignore those things?

A brief chat on twitter, but it got me thinking: how am I able to ignore those things? Yesterday, and again today, there were apsects of my illness which caused individual pain and discomfort, were detrimental to my career, and isolated me socially. And all because I tried to have two “quasi-normal” days in a row.

I’ve not got it totally worked out yet, but there are a few coping mechanisms which seem to help a bit.

1. Acknowledging pain for what it is.

My mum doesn’t believe I’m ill. Or rather, she sees that I have to rest, but it hasn’t clicked that it also hurts, it’s also isolating, and it’s also setting me back, compared to my peers. I’m slowly learning that when she, or other people, try to minimise or normalise my experience, that I have to speak up, or things won’t improve. So when I said “I’ve been out all day, and now I’m dangerously tired”, she’ll said “well of course, anyone would be tired”. I have to make her realise that “tired” means I’ll be unable to lift my arms to bring food to my mouth, and will have to prop my plate on my pillow and eat very slowly, face-to-plate, avoiding anything that takes too much chewing. It’s not sitting on the sofa watching telly.

It means a lot to be believed, because when I am that tired, the niggling feeling that everyone feels this way and I’m just too pathetic or lazy to cope is something that makes the indignity of it harder to bear.

2. Good, guilt-free rest.

It’s taken quite a while to be able to rest without feeling guilty that everybody else is hard at work. But when I set my mind to rest well, seeing it as my job for that day, not only is the rest better, but it’s more likely to be creative. I’ll find myself thinking of ways I can be kind to other people, or pray for others, or thinking through ways to improve situations at work or in groups I’m part of.

3. Distractions.

Radio shows, bad soaps, twitter, facebook, anything to dull my mind if it’s racing in a bad direction.

4. Productivity.

This one may seem counter-intuitive. How can I be productive, if I’m too sick to get out of bed, or go to work? Doing anything that has a visible outcome is something that keeps me feeling a sense of achievement, so that I can tell one day from another. So making a birthday card, painting my nails, balling up wool, drawing, anything that has an output. They don’t cost much energy for the amount of self-esteem they give me.

5. Companionship.

Particularly on twitter, there are lots of other people with similar lifestyles. Some are more sick, some are less sick. All of us have experienced loss, pain, isolation, and are continuing to live. It’s not good to be alone.

6. Avoiding people who drain me

If, during the few days I am out of bed, I spend time with people whose attitude makes me feel bad about myself, who are critical, who lack attention, however otherwise-lovely they are, I am conscious of avoiding them. Their comments echo back to me on days I’m alone, and wear away at my motivation. Same goes for twitter, social media etc – if people tire me, I stop contact.

7. Thankfulness

The song 10,000 reasons has a lot to answer for. But every day, I give thanks for at least three things. Often they’re pretty small, and are brief windows of relief in a pain-filled day. But I give thanks, because it’s a way of forcing my memory to keep hold of the good things, and lose the bad.

This seems to help with the pain, and the isolation. The bigger issue of the effect on my career and finances is one for another post, as it warrants a different type of response.

 

This is ME – M.E. Awareness Day 2014

Eryngium Bourgatii

Most of you (my friends and family) know that I have Chronic Fatigue Syndrome (CFS). It is also known as Myalgic Encephalomyelitis (M.E) and Chronic Fatigue Immune Deficiency Syndrome (CFIDS).

As part of International ME/CFS/Fibromyalgia Awareness Day on May 12, I’m taking part in an international blog, where lots of us with M.E. answer the same basic questions. I’ve made a list of 5 things you may not know about me (in general) and 5 things you may not know about my life with CFS / ME.

Have a read and see if there’s anything you didn’t know. Awareness Day is about creating awareness, so through these questions and answers, this is my way of creating a little more awareness about CFS / ME. If you wish to pass this onto anyone, feel free to do so. It will create more awareness of this debilitating illness if you do. Thank you! :-)

I’m making the assumption that you already know the symptoms, but if not, vaguely this:

symptoms

What is your name & how long have you had ME / CFS?

Elizabeth, I’ve had ME / CFS for around two years, though it’s been noticeable to other people for about eighteen months.

Where do you live? (Country, State, City – however detailed you want)

Hampton, a leafy village on the edge of London, England.

Age (if you’re willing to share)

27

Tell us 5 things about you that the people in your life probably don’t know (non-illness-related):

  1. I play the double bass rather well. Most of my time at uni was spent lugging Guiseppe, my gorgeous French walnut double bass, around to orchestral rehearsals. I’ve played in tiny churches and massive concert halls. I’ve even played on the back of a truck. My favourite things are symphonies by Brahms, Bruckner, Sibelius and Shostakovich. Sibelius 5 is my all-time favourite piece of music, one year at the Proms I listened to the whole thing standing on tiptoes to see more.
  2. I could somersault and used to trampoline regularly. I’ve worn sparkly leotards and have a selection of interesting socks.
  3. My favourite TV programme is Holby City. Not because of its quality, per se, but because of its reliability. From 2004-2011 I moved house 18 times (I think), and in every new home, on Tuesdays it was reliably there, when nothing else felt like home. On Wednesdays, as an intern, I had 90 minutes off in the middle of the day to make up for late-night Alpha courses, and I’d use 60 of them catching up with Holby. Doctors going out with nurses, people being saved from the brink of heart failure, and the odd train wreck at the end of the series to kill off the expensive actress who’s going to ITV. What’s not to love!?
  4. I live with a semi-retired couple, in a house full of old-people stuff. We’ve got six remote controls, mismatched crockery, a selection of wicker conservatory furniture and you have to put a mat under anything that’s going on the table. Not cool. But I love it. Think of having an extra set of parents, but who aren’t uniquely annoying to you because they remind you of that time you dropped the marmalade when you were six.
  5. I hate carnations, the bought-from-a-garage apology flower, and my favourite flower is eryngium bourgatii (sea holly). It’s just so spiky and blue! I used to design gardens for a living, so I know Latin names but not common ones for a lot of plants. I have feelings about all of them, not all positive.

Tell us 5 things about you that the people in your life probably don’t know about your life with CFS / ME:

  1. I spend at least a day a week (usually two) completely housebound. Most of that time is spent in bed, with normally two bathroom trips and two trips downstairs (one to fetch breakfast and lunch, one for dinner).
  2. The most obviously disabled part of my day is the train journey home, where as the adrenalin of the day wears off, my legs, back and hands go into random, painful spasms. Everyone else in the carriage looks at me like a weirdo, and judges the bloke who was reluctant to give up the priority seat.
  3. I can actually run still. Although I use crutches on a day-to-day basis, running is technically a possibility. However, it’s excruciatingly painful, I can do about 40m before my legs give way, and my chest will hurt as if I’m under an elephant for about 15 minutes afterwards. Then I regret it all day, and the next day too, and have worse joint pain for a week. I just miss it so much that occasionally it’s worth the fall-out. When I started using crutches, a colleague tried to buy me an inflatable parrot, to complete the pirate look.
  4. I have a bus pass, like a pensioner, but unlike a pensioner it’s subject to a mobility assessment. Since getting ill, the best part of my commute, the 15 minutes walk over Vauxhall Bridge, is completely impossible for me if I want to save enough energy for working. So I’m almost always getting buses for one or two stops, because the walk is too much and the tube has staircases. Staircases are my nemesis, I’ll basically a first generation Dalek. A colleague once called me Davros.
  5. Energy is energy is energy. Physical, emotional and mental tasks all draw power from the same battery, which doesn’t recharge reliably. So if a conversation is tending towards the deep-and-meaningful, I’ll sometimes have to ask my friend or family member to put it on hold until I’ve got home safely, rather than risk wasting too much “moving about energy” on feeling things and getting stuck far from home. When I’m really really exhausted and can barely move, but for some reason I’m not at home in bed, there are a few friends I’ll trust to just make all emotional and mental decisions for me while I “power down”.

What one thing do you think most people wouldn’t know about living with ME / CFS that you’d like them to know?

When you see me in person, that time is so unbelievably precious to me, that I want you to value it too. This illness really hurts. Really really hurts. All the time, and every day. Very considerately, people ask if I’m feeling better, when they’d seen me taking pills or I’d cancelled our last shared activity due to illness. And I just want to slap them, if it wouldn’t hurt my hand so much. No, I’m not feeling better, I’m never feeling better, and you looking disappointed isn’t going to do anything to change the situation. You only see me today because yesterday and tomorrow I didn’t and won’t see anybody, just to save up the strength to come and see you. And seeing as I have, why are you asking me to tell you about pain, and pills, and to give more precious time to the disease? Why aren’t we living? Why aren’t we holding onto each other’s every word like it’s the last thing we’ll say to anybody in days? Why are we so unnecessarily mean?

What is the most frustrating aspect for you of living with ME / CFS?

Having to act like a weirdo. I become that person who’s in the way on public transport, who stops irrationally in the street, or who sits down when everyone else is standing up. I’m the person who used to irritate me when I was sprinting to change tube, who’d mess up my lovely neat church services by needing things in large print or wanting the handrail putting out. And I see people like me-five-years-ago getting annoyed and it shows up how driven and self-important and inflexible I was when I was younger. Ouch.

Anything else you’d like to say before finishing?

What you can do to help is make sure that anywhere you go out to is accessible to me. For example, check that your local pub has an accessible loo, and if it does, it isn’t rendered inaccessible by being full of 12 bags of rubbish, a drum kit, the “celebrate Christmas with us” sign in June, or any other rubbish. A pub trip where you can’t even drink is not worth getting out of bed for. And losing a whole crowd of regulars is worth the pub changing their storage habits for. Don’t sit in priority seats if you don’t need them. Don’t use lifts you don’t need, but do complain if they aren’t working. It takes time, but if each able-bodied person made even one “your access isn’t accessible” complaint each year, or did something to initiate change, then those of us without much energy could use it doing things and going places, rather than fighting to be allowed in.

Examples of “accessibility” have included “due to flooding, the train you’re on will be met by a replacement bus service at a non-accessible station. Please crawl upstairs in the rain.” Luckily I spotted the problem at an earlier station, but the complaint letter took 4 months to get a barely-comprehensible and indifferent reply. If everyone on the train had objected, they’d have noticed and changed something.

Oh, and send cake. Cake makes it all better. And kittens. And give me hugs if you see me, but not overenthusiastic ones, as I’m a bit fragile.

Contact details (if you want to give them) – blog, Twitter, FB etc

This is my blog – https://montaguemouse.wordpress.com/

Twitter is @eah39. Twitter is the easiest way to contact me, because it requires very little energy to reply. I’m happy to answer any questions, but might be slow as it takes days to save up enough spare time for them.

That’s a shame

At church on Sunday, the preacher talked about how the cross frees us from shame. “I’ve heard this all before”, I thought, issues surrounding unconfessed sin, residual guilt, etc etc are long gone, I’m used to keeping short accounts with God. Then he pulled up a long list of thing which people are ashamed of – family circumstances, debt, addiction, work status, body image – and on the list was physical illness. Which made a little lightbulb go on in my head. (It’s fine, I was wearing my sunglasses.)

I go to the sort of churches where if you sneeze they lay on hands. To walk in with crutches is to risk being divebombed by prophecies that I’m going to be cured, and in-depth scrutiny about why I’m ill and when I’m going to be better. Yes, I have, occasionally, seen miraculous healing happen, and believe that God hears and answers prayer. And yet I haven’t been up to ask people to pray that I would be healed.

“Shame; awkward, senseless shame, does as much towards preventing good acts & straightforward happiness as many of our vices do” C.S. Lewis

At that point during the sermon, I thought about the field where I’d always felt my calling lay – ministry to people on the margins, particularly those who are isolated with health problems. I’ve known since I was 20, but it’s never quite taken off yet.

I’d dearly love to not be ill, but I think at the moment I’m meant to be. It’s giving me resilience, making me rely on God, making me rely on others. It’s nasty. But through it I’m meeting so many disabled people who I wouldn’t otherwise have met. I’m understanding at a much deeper level how it feels to be marginalised and fearful. I can see that God is using this situation for good, to form me into the sort of person who can fulfil the calling he’s placed on my life.

Previously, I’ve sometimes acted as if I’m sorry to others that I’m ill, for the inconvenience it’s causing them. It’s easy, and very British, to be apologetic when taking someone’s seat on the bus. I’m grateful, of course, when they offer. If it’s a priority seat, I’m also thankful that they get up when I ask them. But I’ve decided not to be ashamed any more.

As with most of the thoughts that occur to me, which at first I think profound, I’ve realised it’s a simple truth. God loves me.

While people I meet will happily shake their heads at me and say “that’s a shame, and you so young, you should try to get better”, I’ve realised that God loves me. He has the authority to heal me, and if he’s choosing not to, then he’ll be doing something clever behind the scenes in that way he always does. God is happy to spend time with me, even if others can’t. God welcomes me into the church, even if church members don’t. God isn’t ashamed of me.

In today’s Chrism Mass, a lot was said, as it always is, about us being a body united, that we are each a part of. Yah boo sucks to the ableds, as they have to now be part of a body which in part has disabilities. But even if it sucks to be ill now, I’m confident that the parts of the body that have no honour now will receive special honour later. None of the formative, humiliating, dependent moments are lost by God. I’m proud (? I might not mean that word ?) that I can share in Christ’s sufferings if only for a short time. I’m assured that I’m fully accepted by God, and a full member of the church, and that I’m accepted. And I’m accepted as I am now, not just as I will be if and when I get well again.

Practically speaking, I am becoming confident that my presence in the room is more valuable than the slight inconvenience of getting me into the room, and the minor inconveniences caused by making an environment bearable for me can also be borne easily by other people. While thankful to them for making those adaptations, I’m not apologetic that they need to be made, because I’m not ashamed of my disabled self.

I’m having a go at living this out, and I’m not sure how this looks yet. But give me a few weeks and I’ll let you know.