Invisible Disabilities

One day earlier this week, I was on the way into church on the bus. On the journey I found myself standing, as the seats downstairs were mostly taken. Standing can sometimes be a problem for me because of my MS. It is difficult to explain (or even understand… for me too!) but the experience of standing can be debilitating and result in energy depletion, heavy limbs and muscle aches.

Although most of the seats were occupied, there was one seat… one of the ones for those who are elderly or disabled… I kept standing.

Was it pride? Well, perhaps…

But I think it was also because I do not APPEAR ‘disabled’. I did not have a walking stick that day (although I do occasionally use one) nor any other outward indication that I am ’disabled’.

And yet I AM ‘disabled’. In fact, one recent (and rather surprising) discovery has been that the very fact that I have MS categorises me as ‘disabled’ in the provisions of the 2010 Equality Act.  But even forgetting all that, I know that standing for long periods is a problem, energy depletion is a BIG problem, cognitive function can sometimes be a problem and so on and on.

(I will spare you some of the further symptomatic details which restrict but which are not visible)

And, as if that were not enough, I also have a second chronic condition more recently diagnosed and rather more difficult to talk about. Three months ago I was diagnosed with Ulcerative Colitis.

Once again, I will not go into all the gruesome details except to say that there are very real restrictions caused by both my conditions, that they both are causes of fatigue and energy depletion and that neither of them  looks as though they are doing anything other than getting worse!

But, to the outward observer, I seem to be the picture of health!

Which is, of course, why I find it is difficult to choose to sit on these disabled seats on the bus!!

And so back to that morning a few days ago… After the bus journey for which I stood all the way, when I reached St Cuthbert’s we were about to begin our monthly lunchtime Bible Study based on the passages for the next Sunday’ services… and if you have looked ahead, then you will know that the Gospel passage on Sunday is about the daughter of Jairus and the woman who had been bleeding for 12 years. 

We cannot be sure, but I think we may assume, that the woman who touched Jesus’ robes would not have been obviously ‘disabled’. Her condition and its symptoms would likely have been ‘invisible’ to others.

I saw the connection.

But I was not just thinking of myself, but of the many (very many!) friends, family members, congregational members (past and present) and pastoral contacts who have conditions (physical, mental or emotional) that are not outwardly ‘visible’.

Let me be quick to say that those of us who have less visible disabilities often do not face the challenges of those who are more ‘obviously’ disabled. The very invisibility tends to mean (in most cases at least) that we do not face the same physical challenges. And we are not generally subject to such discrimination and prejudices as still exist in our society with regard to the ‘disabled’.

While for many people with MS, the effects of the condition are very evident and visible, for me and others they are not. And there are many others who have disabilities that may not be visible, but are nonetheless debilitating, challenging and awkward to cope with, and which put real (and often permanent) restrictions on life. I am thinking of the likes of dyslexia, inflammatory bowel disease, autism/Aspergers, depression, anxiety, and so very many more…

Both the Church and society have moved far in terms of support, inclusion and attitudes to those who have disabilities. But there is still a distance to travel.

Perhaps one thing we could still try to do is find an alternative description to ‘disability’ (and please not ‘differently abled’!) And another is to work harder at ensuring that being ‘disabled’ does not automatically imply that we are also considered as ‘disqualified’ from certain jobs, positions or roles.

After all, in the ‘West Wing’, President Bartlett seemed to do a pretty decent job in spite of his MS! Just a pity he had to start off hiding it!

Jesus' response to and compassion towards the woman with the bleeding tells us something about how God looks upon those of us who have any condition or disability, visible or invisible, and surely also tells us something about how we should regard them.

But none of all these musings resolve my problem with taking a disabled seat on the bus! Perhaps I should just carry a walking stick as a matter of course…

Who stole my descriptors?

OK everyone.... there are loads of you who will profoundly disagree with me.

That's ok.

But I would ask you to show respect and be considered in you responses... please!

I respect you as brothers and sisters in Christ. I hope you can do the same with me...

At the General Assembly of the Church of Scotland held last month, and following the deliberations and decisions of the Presbyteries of the church, the Kirk took the significant but limited step of affirming the traditional teaching of the church on matters of sexual relationship and marriage, while simultaneously allowing congregations who so decided, to depart from this ‘traditional’ position and (should they so wish) appoint or call Ministers or Deacons in Civil Partnerships (and possibly also in time, Same Sex Marriage).

Leaving aside the substantive issue, and also setting aside any concerns about the consistency or long-term sustainability of this ‘permissive’ or ‘contradictory’ position (depending on your view) I have a deeper concern.

I may be wrong (I may even be slightly paranoid!) but I think over these last few years as both this issue has come to the fore in the church and also my own (accepting and affirming) views have become more widely known, I have been quietly excluded from certain mailing lists, gatherings and meetings.

For example, there is a Church of Scotland Evangelical Network with whose aims I broadly agree and – had it been set up 10 or 15 years ago – I imagine I would have been invited to be involved at an early stage. Membership of the network is open to minsters, elders, members and adherents of the Church of Scotland, so should I join?

Well, I doubt I would be welcome as, according to its website, it was set up due to concern about the issue of Ministers etc in same-sex relationships.

And so, it seems, the mark of being an evangelical is our view on this single issue.

I wish this Network well; it includes many friends and I am hugely encouraged by the commitment of those involved to stay in the Church of Scotland even if they disagree with decisions that have been taken.

But I would still like to know why I am no longer to be described as an evangelical? It seems that it would come down only to my views on this single issue (and if I there are other reasons, I would really like to know!)

It would seem that I am in good company, with the likes of Roy Clements, Rob Bell, Tony Campolo, Brian MacLaren and Steve Chalke.

But who decided that this was the mark of being ‘evangelical’? And why?

I am genuinely puzzled, and (as you will guess) feel a little bereaved.

Recently, one clergy colleague who is gay spoke of the process of ‘coming out’. He went on to say that now he was challenged about another ‘coming out’… as an evangelical!

It may (or may not) surprise some of my evangelical sisters and brothers to know that (in the wake of some of my previous posts and blogs) I have been approached by a number of others who – for the moment- are keeping their heads below the parapets, but who personally take the more inclusive and affirming view that I do, while being afraid of losing their sense of ‘tribal’ identity and (more importantly) their many friends within the evangelical fellowship of the church.

And I reckon that if I were to name them (which of course I never will!) then the shock would be great indeed.

But why is this so?

I wish people would discuss these things before they excluded some of us who share their views on most of the fundamental matters of faith.

And I would quite like to feel free to choose my own descriptors rather than have arbitrary criteria imposed by others as to what constituted fair and proper use of such descriptors.

O for a closer walk with God

As we begin Lent, William Cowper’s hymn ‘O for a closer walk with God’ has been much on my mind. Now I know that Cowper suffered bouts of insanity and periods of depression and some of that depression and doubt are reflected in his hymns, including this one.

Yet I find myself in sympathy with much of what he writes in this hymn.

I do long for a closer walk with God… (but perhaps avoid facing up to those things that hinder it!).

‘Where is the blessedness I knew when first I saw the Lord?’ he asks. And I can echo that.

As time goes on it is to be expected that youthful fervency matures (fades?) whether that be applied to romantic love, political views or spiritual intensity.  I am not sure whether or not it is inevitable but it is certainly common.

But along with moving beyond the over simplistic certainties and callow fervour I wonder if we do not also (too often?) lose something of the core of our faith, ditch committed discipleship and settle for a bland milk-and-water type of Christian following (of the type I once ridiculed in the respectable church-going middle class environment in which I was raised).

Or perhaps what I am really saying is that this is part of my perception of myself and my story.

Part of the journey of this Lent may be to ask searching questions of myself as to why I feel that this has occurred and what I can do about it.

‘The dearest idol I have known,

whate’er that idol be,

 help me to tear it from thy throne,

and worship only thee.’

Hmmm… could I really say/sing that with sincerity?

Gulp!

Living with Limitations

Lent has begun.

Like many Christians I am ‘giving something up’ for Lent. Not because I feel I must, nor because I consider it some absolute devotional requirement, but because I find it helpful and useful as a spiritual discipline.

This ‘little fast’ reminds me of Jesus’ forty days fast in the desert, where he was tempted. That in itself is good reason to pursue this disciple.

But more than that, the idea of ‘giving up something for Lent’ is about forsaking for a season things that speak of this world, this existence, this reality and allowing ourselves therefore to focus on a different world, existence and reality; that of God’s Kingdom.

However, something else has struck me this year; that voluntarily giving something up for Lent sets limits and boundaries. There is nothing intrinsically wrong with (for example) eating chocolate or drinking wine or having a coffee or whatever. Giving something up as a spiritual disciple is simply saying ‘just because I can, does not mean I need to’. Just because I can have a cup of coffee, bar of chocolate, glass of malt whisky etc does not mean I must have one. I need not be driven by my every desire but can choose to refocus my attention and energies and – indeed – desires.

Of course, such limitations are in themselves limited! Most of us tend to only give up relatively small things (although they can feel big!). And it is only for six weeks. What’s more we have voluntarily and freely chosen these limits.

I still struggle to get used to the limitations posed by my health (and these limitations are gradually increasing). But while I can choose to accept or resist these limitations, resistance can only go so far, and I have not chosen the underlying limitations in the first place. Naturally, I would much rather they did not exist!

But this – for me – is the added dimension to choosing a voluntary limitation for Lent. As well as the spiritual value, it also gives me a feeling of being able to choose rather than have limitations imposed upon me by an unwelcome and unlooked for health condition.

There is a lot for me to think about in the Lenten season.

Happy Christmas?

I have been thinking and reflecting a great deal these last few days; thinking a lot about what makes us happy.

You may have already noted from some of my previous postings that I am no great advocate of some of the more superficial or straightforward definitions of happiness, nor of the means by which people seek to pursue such ultimately elusive and transient emotional highs.

But if that all seems too high minded or esoteric then I will quote that great philosopher Sheryl Crowe ‘ If it makes you happy, it can’t be that bad; if it makes you happy, then why the hell are you so sad?’

... 'if it makes you happy why the hell are you so sad?’...

Hmm...

I have to honestly confess that Sheryl’s words (sung or spoken) are occasionally quoted to me by my family. Whatever are they trying to tell me? (Please do not attempt to answer!!)

But over these last few days the whole question of happiness has arisen again. In some part I suppose this is because of that oft-repeated greeting ‘ Happy Christmas’.  What do people mean when they say that to me? What do I mean when I say it to others? What do I/they mean by ‘happy’?

Today I had the undoubted privilege of being involved in the annual ‘Spifox’ Christmas Carol Service and Lunch. http://www.spifox.co.uk/ 

‘Spifox’ stands for the ‘Scottish Property Industry Festival of Christmas’ and the Carol Service is hosted at St Cuthbert’s (and has been for many years). Thereafter the lunch (for around 1400 people!) is held in the Edinburgh International Conference Centre.

In the 21 years since this event began Spifox have (of today) raised over £3 million for charities caring for children and young people in Scotland. Remarkable!

Today as we listened to the representatives of this year’s recipient charities describing their work I was aware of the emotion and the tears. Yet these did not seem to jar with the jollity and laughter. Both seemed to me to reflect a very positive kind of happiness; the happiness of having fun in good company and the happiness of being able to do something for those who need our support and assistance. The tears did not contradict the happiness; they were part of it. The challenge and poignancy of some of the stories we heard did not seem to jar with the fun and celebration but somehow (strangely?) all of it became woven together into one.

That seems not so far removed from another experience of the last few days as I have been reflecting on the death of a gentleman in my congregation, meeting with his family and preparing for the funeral in a couple of days time. Sadness, tears, happy memories and appreciation were all combined in one.

Happiness?

And yet there has been another strand these past few days.

I have struggled with the pain and anxiety of a spouse and family dealing with a loved one who has a progressive degenerative illness. They truly have cause to feel unhappy. As a Minister I can do little more than stand with them, feel with them, pray with them and share and acknowledge the unhappiness.

But alongside all of that I have also had to deal with the all too frequent politics and personality clashes that are part of everyday congregational life.

Actually, were I to be more accurate, then I would say not only congregational life but life in every human organisation or group. Although I have been involved more in congregations than with other groups and have seen some of the pettiness of personality conflicts, politics and posturing in churches, I must honestly say that the worst I have ever encountered were not in church groups but in political parties (I was an active member of one such for some years) Parent Teacher Associations (don’t get me started!) and Community Councils.  

I guess the problem is people.

And here I get back to happiness.

I can understand why the pettiness etc of others can make us unhappy. But why do we (in response) choose to react by way of criticism and cynicism, resentment and ridicule, sarcasm and slight, bitterness and bile?

It makes nothing better, only exacerbates and multiplies the problem and (and this is significant) ends up making us more unhappy than we were to begin with!

Gosh, talk about cutting off our nose to spite our face!

The more aggrieved we become, the less we choose grace and generosity of spirit, the more we convince ourselves that we are the injured party and we are right, the less we show forgiveness and understanding, the worse our own unhappiness becomes!

My observation of recent days is that those who choose to look at the bigger picture with a grace-filled attitude (however much they have been wronged), those who are forgiving and accommodating, those who are understanding and gracious, those who genuinely see the plight of others who really have struggles and difficulties, those who do not regard their own agendas as the only important matter are much more likely to be ‘happy’ people.

While those who continually complain and carp, who are concerned that their rights and privileges have been thwarted, who only have grumps about this or that or the other, who are primarily concerned with pursuing their own agenda, are much more likely to be miserable!

And why on earth would anyone choose misery?

And one final thought regarding this in the church... and bear in mind (as I said above) it is not only the church! 

If our engagement with the church is mainly (or increasingly) in terms of its organisational machinations and we are divorcing ourselves from its worship, fellowship and mission, then we will get an increasingly jaundiced view (which will, of course, make us increasingly unhappy!).

Thank God my engagement with the church is not only ‘organisational’ or ‘political’. It is the worship, fellowship and mission of the church that put these secondary matters into perspective. Distance ourselves from these more important aspects of church life and we will have a warped view indeed.

Choose to focus on pettiness (whether as perceived in others or found in ourselves) and we choose unhappiness.

And why on earth would we choose to that?

An Alternative Advent

If you have read my blogs, are a Facebook friend or listen to me preach then you will know how much I value the season of Advent.

There are very many reasons for this. To be honest, I suspect that part of it is simply linked to my personality. I am the type of person who gets a great deal of pleasure out of anticipation (and remembrance for that matter); sometimes even more than from the actual thing that is being anticipated (or remembered)!

But as I have also often said, there are theological reasons for my appreciation of Advent. Amongst the many is the fact that the Lectionary readings and, indeed, the very theme of the season, make us face up to the fact (and the mystery... even perhaps the frustration!) that we live in the ‘in between’ time - in between the First Advent (the Birth of Jesus) and the Second Advent (his Coming again, and please note that I am neither pressing nor suggesting only one possible interpretation of this awaited event!)

I tend towards the view (it is called ‘inaugurated eschatology’ if you are interested!) that  there are both ‘already’ and ‘not yet’ aspects to the Kingdom of God. In other words, in the birth, life, death and resurrection of Jesus the coming and promised Kingdom of God was ‘inaugurated’ and, indeed, continues to break into the here and now through the presence and activity of the Holy Spirit (so I suppose you might call my view ‘Pentecostal eschatology’??) but yet there remains an ’age to come’ in which the Kingdom of God will be fully established.

Now, as I say, I am not willing to force any particular specific interpretation of the how, the what or the when of this (certainly not!).

But  for me it is a view (best articulated by the theologian Oscar Cullman) that makes sense of the fact that I see and know God’s action and presence in the 'here and now' in so many ways, and yet, there are other realities too. Prayers are answered, but not all; I have seen God work in marvellous ways, but only sometimes; etc etc.

I have not explained this very well, but it is only a short(ish) blog!!

My point is that this is one of the things that I love about Advent. I deeply appreciate the opportunity this season offers for reflection on all of this and the attempted explanation of it in preaching and discussion.

And so it is with a deep sense of bereavement that I find that I will be missing both the First and Second Sundays of Advent.... one because of illness and the other because I will be on holiday... yes, of course I can still join in worship, and being on holiday is not a bad thing (although I think I wish I was feeling healthier to enjoy it!) But I will not have the opportunity to lead worship, offer public prayer or preach until so far through Advent that the pressure will be on to talk about shepherds and angels and (even!) wise men!!

But on further reflection I have realised that the very reason I am missing these (mainly illness) is in itself an illustration of my thoughts about living in this between time, this ‘already’ but ‘not yet’ age.

As people have shown concern for me in my health challenges in these last few weeks, several have said something along the lines of, ‘I pray for you; I so wish God would answer my prayers’.

Well, as you may imagine, I know what they mean!

I have prayed frequently for folks to be healed... and I have seen remarkable answers to these prayers!..... sometimes.

On occasion, I have myself been healed in response to prayer and ministry for things such as a relatively minor twisted knee... but not for this ongoing, debilitating and more serious condition of Multiple Sclerosis.

Hmmm...

And I suppose that this is where I come back to the thought about living in these in between times. It is also at this point that I re-affirm my underlying Calvinism in its affirmation of the sovereignty of God in all things. (What do you know? I seem to be a Calvinist, Pentecostal, non-fundamentalist, anti-literalist, inaugurated eschatologist! That’s me folks!)

And as for Advent reflection? Well, it will not happen (this year at least) so much in worship, but will be in the context of personal prayer and meditation as I reflect on the present health realities I face and speak to and listen to God with regard to these in the light of the promise of his coming Kingdom, and the fact that I believe that kingdom was inaugurated in the birth, life, death and resurrection of Jesus and breaks into this present age in the presence and activity of the Holy Spirit, but a Kingdom whose final and full establishment we await in hope.


And so, what does that all mean for me, now?

Waiting and wondering

As I have shared before via my blog, I have friends and colleagues who have counselled me to share less about my health in public. They have suggested that this is all private stuff and I am making myself too vulnerable etc.

I think they are wrong.

I think this partly because I do not subscribe to the view that Ministers should keep some kind of ‘professional distance’ from the realities of life or guard ourselves from human encounter or the embrace of normal living reality or the admission of human frailty or weakness. I cannot square that view with the honesty of (for example) the Apostle Paul or the outpourings of the Psalmists.

But more than that, I have been touched by the number of people who, on reading my blog or hearing me speak regarding my health challenges, have got in touch with me (many of them strangers) to share their experience, seek a listening ear or express their appreciation of how helpful they have found my sharing.

So, if you do not like my openness and honesty, stop reading now!

When I was first diagnosed with MS, I had been unwell for almost two years and unable to sustain full-time ministry. My energy levels were very low, my cognitive functions were compromised, my muscles were stiff, my balance not great and the other ‘unseen’ symptoms were irritating, limiting and debilitating.

And then (quite suddenly and without warning or apparent reason) things began to improve. In due course, I was called to St Cuthbert’s as Minister and things continued to improve. My health was better than I expected it to become, I was able to function pretty much fully in Ministry, and – aside from the occasional dip or blip – I was able to work well and fulfil my Ministerial and pastoral responsibilities.

But almost two years ago there was a marked dip in my health levels; energy drained, symptoms were exacerbated, mental and physical abilities were compromised. None of this would be outwardly evident to most onlookers. But the difference has been very obvious to me and those closest to me.  

With the exception of the occasional week or two, I have not been able to sustain reasonable health or full ministerial functions since January 2013. More recently I have been put on restricted hours and duties by my doctor. And more recently still other medical issues have arisen which are being investigated and which may or may not be somehow related to MS.

And so I am waiting... waiting to find out what is going on medically, waiting for tests and investigations, waiting to engage in further consultations regarding my future ministry and also waiting in hope (at least a little!) that I may yet regain improved health.

But I am also wondering... wondering if I may have to accept that these health limitations are here to stay, wondering if some big decisions may lie ahead, wondering if there are other things going on in terms of my health and wondering what is best for me, for my family, for St Cuthbert’s....

And, if I am to be honest (and you would not expect anything less!) then I am also worrying a little. What next? What are the implications and consequences of this current situation? How will I know what are the right decisions to take?

Yet, in the midst of all that I do still hear God say ‘Do not be afraid’... and I can lay aside the worries and find something of his peace. ‘The peace that passes all understanding’? Hmmm... I always read that as ‘the peace that makes no sense of circumstances’!

And I guess that’s what it is. My circumstances might seem to rob me of peace, but somehow my faith in God sustains me in an ongoing peace.

If that sounds a bit shallow and trite – a pious platitude – then all I can say is that it is genuinely my experience – as real as is my experience of wondering and worrying.

And if that sounds contradictory, then so be it. It is my reality at the moment!

And somehow faith remains, hope is sustained and peace enfolds me while I wait... and wonder... and worry...