About a month ago I ‘spoke’ at Belmont Church in Exeter via a pre-recorded video interview (see here if you missed it). After they showed the video, I rang in, and we did a 20-minute live Q&A while I was mid-vertigo episode, room spinning and all. (This is the beauty of modern technology…)
There were some excellent questions, and I did my best to do justice to them in the short amount of time I had, though my answers are a bit rough and ready. If you want clarification on any of my answers, please comment below, and I can give you a more reasoned response! Just press ‘play’ on the Vimeo video, and you can hear the audio recording of the Q&A. (Sadly the same picture throughout.)
I’ve also provided a hastily-typed transcript of the Q and A (below) for those unable to hear the audio. Enjoy!
Taking Questions from the audience, hosted by John Allan (JA) with me on the phone (TLM):
JA: First question…what can we do to make doctors realise that ME is real, and that there is a right and a wrong treatment?
TLM: Well… aside from holding them down and physically persuading them…?
JA: ha! you’re advocating violence here?
TLM: No, not advocating violence – that’s a bad thing, I remember now… [laughter]
I think the short answer is – I’m not sure. I think there’s a problem with individuals and if you can persuade one doctor that’s part of the battle but there’s also a need for change from the top down.
JA: So there’s a case for spreading awareness at the bottom and changing policies at the top.
TLM: Yes, exactly. and if we could get the NICE guidelines changed I would be a very happy woman
JA: what are the NICE guidelines?
TLM: Those are the NHS official guidelines, and at the moment they advocate Graded Exercise, and they haven’t made any plans to change those.
JA: That’s pretty scandalous really.
**NB Didn’t say it at the time, but a great way of getting involved is to sign up to #MEAction.net and join in with the campaigns **
Audience member: My question: How do you respond when people say you can’t do something because of your illness? e.g. if they have a knowledge of your illness – how do you respond when people question your ability?
TLM: If it’s friends, then I’ll say, ‘hi, i can actually do this’ and then launch into an unwelcome explanation of what I can do and not do. If it’s an official, as I was saying about the BA person, sometimes I don’t have the words right at that moment…
But I always find it does cause a bit of a stir if you stand up from your wheelchair – people don’t expect that. It can cause a lot of confusion in a Christian healing meeting…! [laughter] So that’s one way to alter people’s perceptions!
I think often we think of disability as binary – we think it’s either that someone is completely dis-abled, or they’re completely able-bodied, and there’s a whole bunch of us in the middle, who don’t fit into either of those categories. So I think it’s helpful to remind people to do away with their assumptions.
Audience member: How do you respond when people give you the classic ‘biblical comforts’ of ‘God will do good things through this’ or sometimes like ‘he’s teaching you something’ or ‘it’s punishment for something…?
TLM: The punishment one is a lot easier, in that I can just go to Job, or Jesus and compare myself with them, and that’s a nice feeling to do that…! – I come off quite well.
I think the hardest thing is when people say, ‘this is a lesson, what have you learnt from it?’ – because there’s a lot of truth in that. That’s what makes it hard to hear. Because you can learn things through suffering, and there is a way of seeing blessing in the midst of suffering, but to reduce people’s experience of suffering to an object lesson is to fail them. And God has given us so many good things: it’s right that we have an instinct to love, it’s right that we are appalled by death. These are the ways that God has created us.
So I often look back to the beginning, in Eden, and I look forward, to heaven, and say, ‘what in my experience is leaning toward those things?’ Because however great the lesson I’ve learnt through writing my experiences and finding meaning in this state of chronic illness, I would love to be able to dance in the kitchen with my kid and that’s just something that we’ve got to hold alongside.
JA: So you can’t just reduce it to an object lesson, it’s a whole life…
TLM: Yes, but I think it’s hard to say it at the time to the person who is very forthrightly telling you that. And I would love to see other Christians speaking out against that a little.
Audience member: Can you say something about the way in which you as a couple have been challenged by your ME and how it’s helped working together maybe?
TLM: I think one of the things I’ve really appreciated is Jon’s refusal to blame me for my illness or disability, and I think for a carer it can be really tempting to feel resentment, and somehow he has managed to avoid directing his anger and resentment at me, and his death with it elsewhere.
JA: And this is something you frequently see, is it, in cases like yours, that there can be a resentment towards the person who is the sufferer?
TLM: Yes I think often it can either make you or break you as a couple, because it depends how much you mean, ‘in sickness and in health’, and I think few of us really have a concept of what that means when we make those vows. Something that’s really helped us as a couple has been looking at ‘Love Languages’, which is a concept by Gary Chapman. Before I got ill we would spend lots of quality time together on days off, and since I’ve been ill I’ve had to accept acts of service as a new love language, and we’ve had to find new ways of loving one another and communicating with one another. And as long as you’re fighting to find those new ways of being, then you’ll be alright.
Audience member: …Because there’s so many wicked and evil people in the world, how did God allow Tanya to have this terrible illness when she’s such a lovely and religious – believes in God, everything – and yet he allowed her to have this illness?
JA: So – Tanya – you’re a nice person!
TLM: THANK YOU!! [laughter]
JA: Hey, that wasn’t me, that was the questioner!
[laughter all round]
JA: There are lots of evil people in the word – why would God allow this to happen to you rather than one of them?
TLM: I think it depends on how we see sin and justice. So – I describe sin as everything that is wrong with the world and wrong with us, that we are designed to live in harmony with each other and live in harmony with God, and we sinned and something has gone wrong. So I see sin as a sickness that has infected everything including this world, and we don’t see justice all the time in this lifetime. So if we’re looking for justice now, we’re not going to find it. And I also kind of see that in the way that Jesus was killed: that was not fair. It was a bad thing that happened to the very best of humans.
JA: Just to clarify that – you’re saying that what has happened to you is not directly inflicted by God but is part of the system of chaos in this world. Is that right?
TLM: Yees, it’s kind of… I think of that verse that says ‘it rains on the righteous and the unrighteous’ [Matthew 5:44-45 ish] – there’s blessing that comes for free to everyone, and there’s also a horrible mixture of sickness and death and suffering and injustice. And we can’t look for fairness in the way that people are afflicted. And part of my heart rebels against that because it feels unjust – and we’re right to feel that injustice – but it’s also not the end of the story. Because there will be a point where there is justice and where God does deal with the evil, and does deal with the brokenness of our world and restores it.
Audience member: Thinking of the book of Job – when I read the book of Job – did God afflict Job or did Satan afflict Job. How do you see that – do you think Satan has afflicted you?
TLM: [pause] MMMMM…
TLM: I think that’s a really good distinction to make, and I think it’s good to bring Satan into this because you’re right to say that it was Satan who afflicted Job, and God allowed it, but it was Satan who was bringing it in. So you’ve got this weird kind of messy paradox, that the evil is not originating from God, but if you like, God is ‘staying his hand’. And in terms of what i feel, I think the interesting thing is that when you read Job, Job feels like he’s afflicted by God. He is afflicted by Satan, but the feeling is that he is afflicted by God. And for me that was a really helpful realisation: that when suffering comes, it often feels like it is from the hand of God.
JA: So I guess that ties in too with the verse in the New Testament doesn’t it that says, ‘in everything that happens, God is at work in those who love him, those who are called according to his purpose’? He doesn’t necessarily send the evil, but he can allow it to happen and he uses it for his own purposes…?
TLM: That’s a really great chapter on suffering [Romans 8:18-39] and where God is in it, and I love the bit in that one chapter about the fact that we groan in suffering, and as we groan, God is groaning with us. God the Holy Spirit groans with us. and so i think that helps to adjust our image of God as a distant afflicter of suffering, to be someone who is groaning alongside us.
Audience member: How do you cope with the impact your illness has had on your relationship with your child?
TLM: I think this has been something we’ve just had to learn as we’ve gone along. For me, the way I keep sane with it is by having quality time. And Jon is really kind, because I get to read the stories, which I think is the best job [laughter]. And I can go out of the house maybe twice a month, so I prioritise things like his Harvest Festival. So I can show him in those ways that I love him, and I play to my strengths. So he knows a lot of time that I’m limited to my bed, so I can’t play ball games with him, but I’m really good at making up stories, and I’m really good at playing ‘baby’ when he’s the ‘daddy’, so I basically stick to that.
JA: You did something recently for his birthday party, didn’t you? Uh…Luna???
TLM: OH! You’re talking about the birthday party I did for him? YEAH! I rocked at that! It was a space party, so I wore a silver dress and called myself Luna and claimed to be a sprite from the moon. And I discovered that if you give some kids some facts about space, like “Jupiter is the biggest planet’, and mix it up with some complete fiction, like, if you travel to the centre of the red spot in Jupiter, it’s full of fruit juice and you can lick it, then it really messes with their heads, and they really like you.
JA: Just one more…
Audience member: How has your illness affected your relationships with the people who are close around you and have you seen an impact of that on their faith as well?
TLM: Um…I have a weird situation in that I am friends with a lot of people online who ell me a lot about their life, and then I have normal friends who tell me a normal amount about their life. So in terms of my family relationships and friends relationships… I think they’ve just continued in their own faith and have worked it out their way.
But where I’ve seen it really important to speak out about my experience has been other people on the same journey as me, or a similar journey, who have got in touch via the blog and have been able to share and work through some of those really difficult experiences that very few people talk about. And so that’s where I see potentially my story influencing other people’s faith.
I haven’t yet heard of anyone who has stopped believing because of me! – so I’m gonna call that a win.
JA: Is there any one thing that you would like to say before we finish?
TLM: One of the things that’s been on my mind today is that verse from Matthew where Jesus says, ‘come to me, all you who are weary and burdened, and I will give you rest. For my yoke is easy and my burden is light’ [Matthew 11:28-30 ish]. And for ages I looked at that verse and thought, ‘why is it good to be yoked to God?’ But seeing actually rather than a prison (which is how it can often feel, to be wrestling with faith in the midst of suffering), that Jesus having a yoke alongside us means that actually he’s carrying some of that weight. And I’m still trying to work out what that means, but I really hang onto that as a precious promise. And so that’s really what I’d like to leave you wonderful people with, and I’m very very grateful to you for having me and accommodating me in this way.
JA: Tanya…we’d just like to say thank you very much indeed.
(Thank you especially to David Knowles, who expertly edited out all the technical glitches and repetitions in this audio recording, so that it made a coherent whole).
Over to you:
- Which questions would you have asked? (Maybe I can answer them in future – would you prefer answers via video, audio or normal blog writing)?
- Any clarification needed on my answers?