Posts filed under 'Theology of Chronic Illness'
Scallop shell relief at Saint Guilhem-le-Desert: photo by Fritz Geller-Grimm
On this day, 25th July — the Feast of St James, in 1986 I submitted my DPhil thesis in Chemistry. I don’t remember the date of the viva which followed (somewhere in mid-August to allow me to enter the Jesuit novitiate in mid-September) but I do remember the submission day — not as a calendar date but by the Feast. I remember being amused at first and then moved when I saw the first reading of the day (2 Cor 4:7-15) — how apt it felt after all the struggle to write and the many setbacks! Indeed, I used it as a dedication to the dissertation. Here it is in the NAB version:
Brothers and sisters: We hold this treasure in earthen vessels, that the surpassing power may be of God and not from us.
We are afflicted in every way, but not constrained; perplexed, but not driven to despair; persecuted, but not abandoned;
struck down, but not destroyed; always carrying about in the body the dying of Jesus, so that the life of Jesus may also be manifested in our body.
For we who live are constantly being given up to death for the sake of Jesus, so that the life of Jesus may be manifested in our mortal flesh.
So death is at work in us, but life in you. Since, then, we have the same spirit of faith, according to what is written, I believed, therefore I spoke, we too believe and therefore speak, knowing that the one who raised the Lord Jesus
will raise us also with Jesus and place us with you in his presence. Everything indeed is for you, so that the grace bestowed in abundance on more and more people may cause the thanksgiving to overflow for the glory of God.
It resonates in a different way now as I read it from a place of diminishment due to chronic ill-health. I have just seen my new GP in Oxford. He happens to be the GP I had when I was a student all that time ago. He is — unfortunately — readjusting my medication routine according to his principles. He has every good intention but by adjusting drugs, changing dosages and removing others he is making my life more unpleasant. I am seeing old symptoms I haven’t seen for years. They aren’t going to kill me, they just wear me down a bit more. It is frustrating to be powerless to protect my well-being.
This experience of being at the mercy of others is not uncommon to people with ME or, from what I hear, people with chronic illness in general. Do I find meaning in it? Can I proclaim with Paul that I am ‘constantly being given up to death for the sake of Jesus, so that the life of Jesus may be manifested in my mortal flesh’?
Not really — or at least not directly. I don’t find nobility or anything like that in being ill. I don’t find I can helpfully align my sufferings with those of Christ. I don’t even truly believe that my being ill is God’s will (except in the way that everything that happens is) and certainly he has never intimated that it is his desire. I struggle to abandon myself to trust in providence — after all does God always get what God wants?
But ill or well he does intimate. Become intimate. Show up tenderly. I don’t think he does so more generously because I am suffering. But this is how I am and this is how he meets me. If anything because of my problems with attention and concentration I am aware of him far less than I used to be. But ‘I greet him the days I meet him and bless when I understand’. And that seems enough for him even when it isn’t for me. He is the generous one in this relationship. And the one with the lighter heart.
July 25th, 2014
Felix Randal the farrier, O is he dead then? my duty all ended,
Who have watched his mould of man, big-boned and hardy-handsome
Pining, pining, till time when reason rambled in it, and some
Fatal four disorders, fleshed there, all contended?
Sickness broke him. Impatient, he cursed at first, but mended
Being anointed and all; though a heavenlier heart began some
Months earlier, since I had our sweet reprieve and ransom
Tendered to him. Ah well, God rest him all road ever he offended!
This seeing the sick endears them to us, us too it endears.
My tongue had taught thee comfort, touch had quenched thy tears,
Thy tears that touched my heart, child, Felix, poor Felix Randal;
How far from then forethought of, all thy more boisterous years,
When thou at the random grim forge, powerful amidst peers,
Didst fettle for the great grey drayhorse his bright and battering sandal!
Gerard Manley Hopkins, SJ
I just dropped in on Pray As You Go for the first time in a while and noticed a retreat with the poetry of Hopkins. Listening to one of my favourites, ‘Felix Randal’, I was hit by the line:
this seeing the sick endears them to us, us too it endears
‘Hit’ is perhaps the wrong word. ‘Nudged’ might be better. ‘Us too it endears’ … is that what sickness does? Endear us to God? And is that what God was nudging me to see?
Hopkins says of the once strong farrier Felix that ‘sickness broke him’ but that ‘he mended’ with time and Hopkins tenderness. Hopkins does seen to have been made tender by the encounter. But I find something ambiguous in the poem. If Hopkins is ‘endeared’ by the ‘tears that touched’ his heart what is that last stanza doing extolling the former Felix, ‘powerful amidst peers’, ‘fettling’ that ‘bright and battering sandal’? It doesn’t sound like a lament for lost glory. It sounds like praise and wonder. Is Hopkins moved by ‘seeing the sick’ or ‘all the more boisterous years’. Or is it Hopkins love of ‘dappling’ and contrast that is at play here?
There is something of the play of strength and weakness at work in this poem: the contrast between ‘big-boned and hardy-handsome’ and ‘tears that touched my heart, child, Felix, poor Felix Randal’. As though ‘the heavenlier heart’ that Felix comes to is more impressive for the impatience and cursing that preceded it.
What is it like reading this poem — one I have long loved — from a place of chronic illness? In a word — disturbing. I am not sure I admire it very much any more! Or, at least, I don’t own it any more. Partly it feels like an ill-fitting template — this is terminal illness being theologised — and that makes a poor pattern for the experience of chronic illness. Part of the experience of being chronically ill is that the double-vision of the poem that Hopkins celebrates is forgotten. Your sickened self is the only one at hand. The memory of being ‘powerful amidst peers’ is a private one for grieving over from time to time. The outsider sees none of that.
A tiny example… people say ‘Hello! How are you?’ and every time I am faced with not knowing how to answer. Leaving aside the way convention operates (I know I am not being asked for a full account) there is the fact that I genuinely do not know what to say. How am I? I remember — barely some days — what full functioning was like for me. I can recall being ‘powerful amidst peers’. I remember having great desires, as Ignatius would say. My high-water mark these days is maybe 30% of that previous experience. So every time I say ‘fine’ I feel I betray that former self, however mildly.
But one of the transitions in being sick that helped me a lot was reaching the point where I decided that I couldn’t wait to be ‘better again’ but that I could go on living my life the way it is given to me, and living as well as possible. And largely I do — I have recalibrated the scale so that the 30% is my new normal — and that’s how I measure ‘how I am’. How am I? Well today the asthma is bothering me after the chest infection and that scares me. The last few days I have been feeling dizzy and nauseous towards evening. My lower back and my neck are hurting more than usual. Otherwise I am OK. I am getting about a bit more, enjoying being in Oxford, a bit sad that there is not much I am capable of ‘fettling’ right now, let alone a ‘bright and battering sandal’. Enjoying hearing the bells of Oxford this morning.
I guess ‘fine’ covers it — but it contains another betrayal — not of my former self but of my present self.
This seeing the sick endears them to us, us too it endears.
‘Seeing’ and ‘seeing the sick’ are at the heart of Hopkins’ poem but invisibility is part of the burden of chronic illness. Everyone with chronic illness knows the experience of feeling lousy and being told how well we look. It is usually meant well but it can feel alienating, corrosive. Asserting one’s visibility is problematic too. Rightly, the ones around us calibrate their scale by what they see in the medium term. If someone is acutely ill — common cold, broken leg, etc — we see a change, we extend sympathy, give help, we want to know how someone is. But, as Bateson said, it is difference that makes a difference. And it is the lack of difference in chronic illness that makes the illness invisible. When we force the issue of visibility — tell the story of our illness — we run the risk of alienating those around us. Hell, our illness bores us too!
Talking about chronic illness feels transgressive — as if we are allowed into polite healthy society on the condition that we pretend. Even sitting here writing this my internal critic is trying to shut me up — ‘quit whining’ it says.
I am taking comfort in knowing that Hopkins himself grappled with invisibility and lent it eloquence:
St. Alphonsus Rodriguez
Laybrother of the Society of Jesus
Honour is flashed off exploit, so we say;
And those strokes once that gashed flesh or galled shield
Should tongue that time now, trumpet now that field,
And, on the fighter, forge his glorious day.
On Christ they do and on the martyr may;
But be the war within, the brand we wield
Unseen, the heroic breast not outward-steeled,
Earth hears no hurtle then from fiercest fray.
Yet God (that hews mountain and continent,
Earth, all, out; who, with trickling increment,
Veins violets and tall trees makes more and more)
Could crowd career with conquest while there went
Those years and years by of world without event
That in Majorca Alfonso watched the door.
July 6th, 2014
Changes in the passage of time?
D. G. Myers writes a very frank article, The Mercy of Sickness before Death, about some aspects of his experience of end stage metastatic prostate cancer.
You may, for instance, become more conscious of time. What once might have seemed like wastes of time—a solitaire game, a television show you would never have admitted to watching, the idle poking around for useless information—may become unexpected sources of joy, the low-key celebrations of being alive. The difference is that when you are conscious of choosing how to spend your time, and when you discover that you enjoy your choices, they take on a meaning they could never have had before.
I recommend the article highly. I was struck by the strong differences between the experience of terminal illness and chronic illness — the relationship to time for example.
June 28th, 2014
The cover of Elaine Scarry’s book The Body in Pain
Three posts to set alongside each other:
I feel that if those three articles together were rubbed together something interesting might spark.
Elaine Scarry‘s challenging and insightful book provides a backdrop.
June 13th, 2014
Japanese Katakana: ‘me’
There are some things that are supposed to be sacrosanct on the internet: one of them is that URIs, web addresses to you and me, should never change once they have been allotted. Now, in reality, web addresses get deleted or modified all the time — but I don’t like to be the culprit. Despite that purism, I have just changed the name of one of my post categories. I think it changes the address of 2 or maybe 3 posts so the internet will survive!
Six or so years ago when I created a category for ‘theological’ reflections on chronic illness I called it ‘Theology of Fatigue’. Six years ago I remember not caring what anybody called my illness — CFS or ME made no difference to me. Now I am more sensitive! I have realised that whenever I say Chronic Fatigue Syndrome on the whole what people hear is the one word ‘fatigue’ — they think I am tired a lot and they measure that by their own experience of being tired. There are few things as alienating as being told ‘oh I know, I get tired too’. (Also read Toni Bernhard’s post ‘What Those with Chronic Pain or Illness DON’T Want to Hear‘.)
Well I am tired a lot but that misses the real experience of having ME. Fatigue is almost peripheral. Some days the cognitive problems of ‘brain fog’ are to the fore; some days it is dizziness; other times digestive symptoms, or allergies, or hypersensitivity to sound or light, or waking up as tired as the night before, or muscle and joint pain. Fatigue in itself isn’t the core problem, the ease with which fatigue happens is, and the effects of fatigue on all the other symptoms. The problem is called post-exertional malaise (PEM). I can walk slowly for 30 minutes. I can see a person for some spiritual direction for 50 minutes. I can visit my mother in the nursing home for 10 minutes. But if I walk for 35 minutes, or speed up a little bit, or if the spiritual direction goes on for 10 minutes extra or the visit another five, then there will be consequences. Post-exertional malaise might hit within the hour or it might wait a few hours — sometimes it happens a day or more later. It has two aspects: the malaise part of it feels (to me) like the fatigue and malaise of having flu with the malaise of jet-lag thrown in; the other aspect is that some or all the other symptoms flare up too. A sure sign I am ‘doing too much’ is when my hands or feet swell up with what my doctor called ‘idiopathic urticaria/angiooedema’. Large doses of antihistamines normally keep it at bay but when my symptoms flare it turns up again. And I don’t know whether the PEM will last an hour, a day, or a month.
That’s all to say ‘Theology of Fatigue’ as a category has gone and been replaced by ‘Theology of Chronic Illness’. All I need to do now is actually add some theology to the category!
June 9th, 2014
William James (from Big Think)
Over at Big Think yesterday they had a quote from William James:
“The greatest weapon against stress is our ability to choose one thought over another.”
If only it were that easy! If only our ability to choose were so straightforward! Since I have had ME I find that anxious and stressful thoughts — usually about one symptom or another — pounce on me suddenly like they were cat and me mouse. They leave me shaking and sweating and feeling sick. There isn’t a space between the thought and the physical response in which to choose not to respond. In fact, when I reflect on it, it seems that the first thing I know is the physiological change with the thought about whatever it is following in its wake. And once the adrenaline is pumping and I am thinking anxious thoughts the power to choose to be calm seems to have left me.
I have tried lots of therapies to change this pattern: Cognitive Behavioural Therapy aims to change illness beliefs but it didn’t help me in this area; various NLP-based pattern-interrupts are supposed to help but haven’t in my case; Eriksonian hypnotherapy helps to some degree, letting my unconscious mind ‘choose’ less stressing thoughts, but it isn’t a fast-acting solution for me. Mindfulness is supposed to help but when I am in the grip of the adrenaline response I find it hard to inhabit the observing space and let things be. I have had a modicum of relief in simply ‘externalizing’ the thought — telling someone that X is happening and I am worrying over it and what to do about it — if i can find someone who will listen and not make a fuss or make me feel stupid.
I guess all that shouldn’t surprise me — human beings are complex, weak creatures and sick ones even more so. Ignatian spirituality has been called a ‘mysticism of choice’ and Ignatius knew all about the complexity of choosing one’s thoughts. For him the issue was to do with discernment of spirits. Here is Ignatius’ ‘subtitle’ to his so-called Rules for discernment:
… to aid us toward perceiving and understanding, at least to some extent, the various motions which are caused in the soul: the good motions that they may be received, and the bad that they may be rejected (Exx 313).
‘Motions’ covers thoughts, feelings, desires, leanings, fantasies, etc. and Ignatius provides rules of thumb for sorting them out, ‘good’ from ‘bad’, so that the first can be ‘received’ and the second ‘rejected’. Quite similar in a way to William James sentiment but the context is more nuanced. Ignatius’ rules are embedded in the experience Spiritual Exercises, a month-long imaginative pedagogy of choice and desire. Receiving and rejecting takes some training!
One insight from Ignatius I find helpful is that following the ‘good spirit’ is more helpful than resisting the ‘bad’. All the focus on pattern breaking is — at least in my case — giving extra air time to the ‘bad spirit’. Far more helpful is to engage the ‘good spirit’. I recently discovered a psychological approach that has something in common with this aspect of Ignatius teaching.
Hardwiring Happiness: The Practical Science of Reshaping Your Brain – and Your Life by Rick Hanson attends more to the ‘receiving’ pole than the ‘rejecting’ pole. I will let him explain the practice himself:
What Ignatius describes as ‘storing up consolation’ Hanson presents as three steps HAVE, ENRICH, ABSORB:
1. HAVE – Notice any quality of being for yourself already present in the foreground or background of awareness. Perhaps you can sense or feel a determination to take care of your own needs, or good wishes for yourself. Or, create this feeling. Bring to mind a time when you were strong on your own behalf, when you self-advocated or were kind to yourself. If it’s hard to get on your own side, start by remembering the experience of being for someone else. Feel what this is like, and then see if you can bring the same attitude to yourself. Perhaps get an image or memory of yourself as a young, vulnerable child and see if you can feel supportive toward that young person.
2. ENRICH – Open to this feeling. Let it fill your body and mind and become more intense. Stay with it, help it last, make a sanctuary for it in your mind. Notice different aspects of the experience. Imagine how you would sit or stand or speak of you were on your own side, and then let your posture or facial expression shift in this direction. Be aware of how being on your own side would matter for you at home or work.
3. ABSORB – Sense and intend that this feeling of being on your own side is sinking into you as you sink into it. Let this good experience become a part of you. Give yourself over to it. Let being kind toward yourself, wishing yourself well, be increasingly how you treat yourself.
It sounds very simple — and it is. Make the most of ‘good’ experiences when they happen, amplify them and dwell with them long enough for them to affect the brain’s chemistry, store them up. And even when such an experience is not present you can evoke a memory or even imagine one and store that up too.
I find that even when ‘nothing’ else good is going on I can enjoy the simple experience of holding a hot water bottle: the warmth is comforting and when I focus on it it expands and I notice the way it relaxes muscle and soothes pain and takes up the focus of my attention in a lovely way. If I dwell further I can feel it connect with other richer experiences too.
And more, even when the adrenaline has pounced on me and I am feeling scared and wrung out, shaken and shivery, when I get a moment’s freedom I can recall the hot water bottle — or better fill a real one — and, instead of fighting the adrenaline or trying hard to choose not to think disturbing thoughts, I can accept and receive something good and healing. And maybe take a step to rewiring my brain.
June 8th, 2014
Given with love?
All illness involves loss. At times I’ve read the story of the last fourteen years as a tale of loss after loss–of energy, of mobility, of friendships, of useful work, of reputation, of my own reliability–and when I read it that way it seems like I’m trapped in a collapsing bubble of capability and control. From being an agent I’m becoming ever more a patient–an impatient patient.
Grieving those losses is natural–there’s a whole literature to guide you through the stages of loss, to help you do your grieving–but nature isn’t always all it seems. Is it in our nature to hold our own lives as possession? Are we to be self-possessed? Isn’t that the sin of Adam–to want what is given as a gift to be owned by right, available of demand, the object of control and convenience? Isn’t it in the nature of nature to be recalcitrant as well as malleable; Other rather than Same?
What we hold we hold as gift–including ourselves, including our lives. St. Ignatius makes it his basic principle, his starting point, that our origin and end are both outside ourselves.
Human beings are created to praise, reverence, and serve God our Lord, and by this means to save their souls.
And the other things on the face of the earth are created for us and that they may help us in following the end for which we are created.
From this it follows that we are to use them as much as they help us on to our end, and ought to rid ourselves of them so far as they hinder us as to it.
For this it is necessary to make ourselves indifferent to all created things in all that is allowed to the choice of our free will and is not prohibited to it; so that, on our part, we want not health rather than sickness, riches rather than poverty, honour rather than dishonour, long rather than short life, and so in all the rest; desiring and choosing only what is most conducive for us to the end for which we are created.
‘We want not health rather than sickness’. That’s a bold manifesto to be placing at the door to the Spiritual Exercises–an expensive ticket for entry. In a wild and youthful spirit our idealism makes that prayer. I remember, many years ago, quaking at the prospect but finding it incredibly attractive–to be that indifferent, that free, that unafraid, that available to whatever destiny awaited me.
And there’s the paradox for me. It is a liberating vision to be unbound from fear of death or illness or poverty or dishonour. So free! Yet when illness makes an appearance it comes as a binding, a limiting, a loss. It comes un-heroically, sadly, in complication. How can you receive it with open arms as a lover’s gift?
Ignatius’ vision isn’t fatalistic. Finding God in all things isn’t an underwriting of reality as it comes to us. Often it is a naming of evil, a refusal of acquiescence, a passion to make things otherwise. How do you find God in illness–by fighting or surrendering?
At a practical level I grapple with that question under the rubric of ‘living’? Do I put my life on hold until the imaginary moment I become well again or do I live as well as I can here and now with my losses all around me?
June 1st, 2014
First, something from a safe distance: I wrote the homily that follows as part of a class in Celebrational Style (that’s a course in leading worship) while I was at JSTB. The assignment was to create, preside at, and preach for a service of sacramental anointing outside a Eucharistic context. To do that I had to get to grips with the sacrament’s underlying theology and found Jake Empereur’s book Prophetic Anointing: God’s Call to the Sick, the Elderly and the Dying to be really helpful.
The Sacrament of the Sick can’t promise healing–indeed for a long while it was only offered to the dying!–but it must pray for it confidently. How do you handle that? Empereur’s argument (as I recall) is that anointing recognises the prophetic vocation of sickness. I remember the homily divided the congregation (of classmates) right down the middle. Some thought it was powerful; other’s hated it. Luckily the professor fell in the first group…
As I re-read it today I am hearing me preach to myself. Does it ring true to my own experience since? I do find it encouraging right now. It speaks to my experience of God in all this but possibly not to my actual experience of Church or even of community. Or perhaps it points up the unstable edginess of prophecy… the sacrament might assert the central place of the sick in community life but it does so against a constant marginalising pressure. One of my unspoken fears is that if my condition worsens seriously I will have to leave my present community for somewhere able to give more care. Marginal or central? Both.
It is easy to be eloquent about sickness when we are in the best of health but even something as a simple as a minor headache can leave us speechless and confounded. There is a mystery here: the Christian community both attempts to find a meaning in suffering and to pray for it to end.
Jesus healed the sick in body and mind but eventually was reduced to pain and suffering; he raised the dead to life but finally succumbed to death, a most violent death. His enemies scorned him with this very taunt: “You saved others, why don’t you save yourself?”
God’s word of comfort and life is so utterly opposed to all diminishment yet is diminished, so completely proclaims freedom yet is bound.
The nasty truth is that sickness can destroy us, can eat at us, can make each miserable moment an effort. In sickness we know pain, and defeat, and emptiness. Our glorious notions of the ennobling power of suffering fade faced even with a headache.
And our culture adds another layer to the pain of sickness. Because when health and fitness become twin Gods, sickness becomes sin; when productivity becomes paramount, the passivity of pain becomes failure. In the harsh sunshine of this world it seems that sickness can only alienate us from our community, from our friends and family, even from our own selves. It seems that to be sick is to be on the margin, on the edge, on the way out.
But . not . for . us , not in the church, not in the community of Jesus. That is why we gather: to undo the power of illness. To recognise its evil and to pray for life and health and joy. But also, and perhaps above all, to take you who are sick into our midst. To reveal the lie that sick people are peripheral to the pulse of life. Because, no matter the appearance otherwise, you are the heart of this community, our community.
Jesus whispers to you with a call, a challenging vocation: “Come to me, you who are weary and heavy-burdened — and I will give you rest” Jesus has invited you to exchange the “yoke” of alienation for the “yoke” of companionship, and has made a promise: “this yoke is easy, this burden light.”
In this sacrament, it may seem that the Church gathers to try to give you something you lack. But the reality is different. We who appear healthy are here to receive from you. You have something to give to us. A word to speak to us from the margin, from the edge, from our centre, from our heart. You are gift to us, you are a hard poem telling us of life and death, of the mystery at the heart of all life.
That is why we celebrate today: we need you, we need to learn from you, we need to see you tread a path in Jesus’ footsteps, a path that we will each in our own way follow.
This is the mystery: we anoint you as prophets, pilgrims on our common way, that we may all be prophetic to a world that so fears both life and death; and yet we anoint you that you may be healed, that we may as community be made whole.
We have good news for each other, we have the oil of gladness instead of mourning, the mantle of praise instead of a faint spirit, because we hear the Lord’s invitation and the Lord’s promise:
“Take my yoke upon you, and learn from me; for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light.”
April 14th, 2007
I don’t know whether this will be a lone post, the first of a coherent series, or just the start of some jottings but I thought in the shower this morning that it is about time I tried to write about the experience of Chronic Fatigue Syndrome as a person of faith and, indeed, an erstwhile theologian.
Suffering is an important issue for Christian theology. All religious belief systems hold out some kind of promise of some kind salvation from suffering; but Christians have had to contend from the beginning with the fact that the founding figure of our faith suffered, died, and was buried. We have had to make sense of the Passion and Resurrection. How do we say that suffering can be the locus of God’s own activity without making God a monster or an incompetent?
The title of this post comes from Gerard Manley Hopkins ‘Wreck of the Deutschland‘–a fellow Jesuit’s reflection on suffering, in his case the conspiration of natural disaster and human persecution as ‘five Franciscan Nuns exiles by the Falk Laws drowned between midnight and morning of Dec. 7th. 1875′. The middle section of his long poem is tussling in tortured language to understand the report that one of the nuns was heard calling ‘O Christ, Christ, come quickly’. ‘The cross to her she calls Christ to her, christens her wild-worst Best’: this is Hopkins’ problem–what is she doing calling God into her suffering, naming the worst that can happen to her the best? He argues one way and another but in the middle of his flow he writes ‘the appealing of the Passion is tenderer in prayer apart’. And he is right: it is easier to be moved by the Passion when you are not in it! In it’s midst suffering can sabotage prayer so that only afterwards can it seem graced. And theories born in prayer apart have little purchase on one’s experience while suffering.
I suppose I want to say some theological things from the heart of my particular experience of suffering–not from ‘prayer apart’. Suffering? I’m not talking about earthquake, holocaust, or cancer. CFS isn’t dramatic, isn’t terminal, and none of its symptoms on their own are unusual in healthy people but their combined effect over time is debilitating, life-changing. Whatever I write it won’t be theodicy. It won’t be anything so grand as a theology of suffering, not even a theology of illness, but I hope it might be a chance for me to make explicit to myself who the God is I have met here in this particular experience.
April 13th, 2007