Easter - closed churches and open faith

Easter Day - and the churches are empty across the nation, across chunks of the world even.

Some bemoan this, that on our holy day our buildings are closed, claiming it sends out a message that our faith is irrelevant and has nothing to offer in these virus days.

I beg to differ - the church has been forced into new ways and patterns, we seem to be engaging more, with each other and with the community.

On a normal Holy Week and Easter I would be leading services hidden away in church buildings, a brief open air on Good Friday led by an ecumenical colleague, to church folk in one village and maybe 1 or 2 passers by who hurry past.

This year I have led no church services, I have sent out worship material in advance, I have invited people to place palm crosses in windows and redecorate for today - Easter Day.  This year I have posted in community facebook groups explaining that they may see some crosses amid the rainbows and why, wishing all Easter greetings.  This year I have had 58 positive responses to that post in one community alone, almost all not church attenders, and it continues with today's Easter post.

This year when we could not meet inside the church I made a point of telling the story outside the building (at church near manse).   Visible to those out on their walks, emailed to contacts across my churches, used in my community facebook posts.

This year I worried about those who didn't have internet access or resources - posting and phoning - and have challenged myself about not including those unable to attend in previous years. Just because there are more I have been stirred to act. I have worried about zoom worship and video clips because it excludes some, yet I have in the busyness of regular church services been less alert to how those not able to come any year can be a part of our worship.

This year I have thought of how the excluded can worship, for too long we have thought of those less able to get to our buildings as in need of visits, calls, but not resources to worship with us.

This year I have heard of church people choosing to engage with worship from various sources, and have spoken about how they used the reflections I circulated, I have seen their crosses in windows and front gardens when walking and photos emailed.

This year it feels that our Easter journeys have been more public, have been wider for many, and have challenged me deeply about our patterns of  inclusion.  Lessons I need to process and apply in life beyond Coronavirus.

The first Easter the followers of Jesus were scattered in different places, some - a group of women, or just Mary of Magdala depending which gospel - head for the tomb, the message is sent back to others, still more are hiding in locked rooms or heading home to Emmaus. Maybe this year we are closer to the dispersed, confused, still mourning first followers of the risen Christ.

Good Friday - rituals lost and found

It is Good Friday

A day when the churches are traditionally full of ritual - from the high churches that have stripped altar and church to a bareness to mark the solemnity of the day, to the ecumenical gatherings that walk behind a cross carried through their communities.   And in a couple of days the ritual of newly lit Easter candles, the cry 'He is risen' and response 'He is risen indeed, Allelulia'

Others follow a ritual of chocolate and the hunt for eggs, but this year we are stripped of our rituals and the hunt for eggs is mere practicality, alongside that for flour and the elusive toilet roll. 

I remember our conversations in college about the place of ritual in human life and community. In the past religions were a gathering point for community rituals. This is less the case today, certainly in the UK, although many still look to churches and faith when it comes to a funeral.  And where no religion is invoked there is still a rhythm, a ritual to our stages of life, and of death.  We are in a time where even that most precious ritual is denied people, first reduced numbers and now in many areas no gathering at all at crematoria. A scaled down farewell, with no touch to wipe away tears, no arm to support the grieving. Before that no bedside vigil at the hospital no final moments close to loved ones.

We are in a time of worldwide insecurity, and national upheaval that has changed everyone's lives, in such times our need for some roots, some shared connection is very real. Ritual offers that, and as other rituals - of faith, and beyond - are stripped away we find new ones. The Thursday clap for the NHS, or wider to all keyworkers, has within 3 weeks become one such ritual.  It holds people in a shared activity at a set time, a bonding in unity despite our separations. It offers a sense of doing something meaningful.  On facebook people celebrate where their street has performed well, or bemoan if it is too quiet, and wow betide any that question the effectiveness of the now sacred ritual. Like all rituals, we come as we are, our motives and feelings may be mixed, but the ritual stretches beyond those that take part.

On this Good Friday - I hear the echoes of crowds in Jerusalem centuries ago, The crowds cheering on the preacher on the donkey, with a wide mix of hopes of how he might change their lives; then the crowds called on to choose between the one who threatens to rebel against Rome and the one who turned over the tables and spoke of the holy temple being destroyed.

On this Good Friday - I recognise in the cross the cry of those who feel forsaken, alone, abandoned.
And I recognise the heart ache of those forced to be distant from loved ones in pain and in the shadow of death, those who yearn to offer comfort but are kept out of reach.

On this Good Friday we again stand with those who are only able to do the basics in care for their dead, and must wait before fuller farewells can be offered.

On this Good Friday we sit and wait, stripped of so much and yet called together in new ways and new rituals. A world turned upside down, and the undervalued and under paid lifted up in true recognition. I pray that the cheers of the doorsteps morph into a real change in wages and resourcing of medics, carers, cleaners  and  others who are now revealed as those we rely on.

On this Good Friday - we weep and we wait.

I am who I am

It has been a very long time since I last blogged, and we are now in the strange world of Coronavirus. I have been a minister now for over 10 years and in Jan 2020 started my sabbatical, so only returned to my role on April 1st, the day of the fools!  Yesterday I had my birthday in shutdown after a weekend getting hard copies of Easter resources to church folk not on the internet.  The calm after a flurry of activity.

I have spend most of my sabbatical in quiet and alone, so already acclimatised to how I am now living, in a way my life has not changed as much as it has for many. Unlike friends and others in the job who I meet online I am not feeling loss or angst about not leading worship week by week and especially this Holy Week into Easter.  I do not feel personal anxiety about the virus - I am physically healthy and keeping to the distance rules, although family members are more vulnerable I trust that they are also being kept as safe as is possible.  I also have insight about microbiology and biochemistry from my degree days. 

But I wonder also if the medication that supports my mental health - to balance the highs and lows of bipolar - also has a numbing factor.  I recognise the pain of others and their anxiety but it does not create the emotional link that triggers a direct reaction in me.  Does this give me resilience? Not constantly drained by the care of others. Or simply make me unemphatic?  Does this make me a more useful minister or a worse minister? Or just simply make me the person and the minister that I am?

I go with the latter, I am who I am - I am called as who I am.

Whatever you are feeling and however you are coping is a valid response, we are who we are, and there are no rules of how we should feel, even if there are sensible rules about our movements.

Being Mental Health Aware

As mental health awareness week 2018 comes to an end I have been struck by the different aspects that I have heard being discussed over media and elsewhere.

I have heard very articulate people on radio phone-ins, and I guess I come into that category - well enough to explain my experience to others.  Alongside this I also encounter those in long term care accommodation due to their mental health.  

Mental health is just like physical health – there is a wide range of conditions and a wide range of levels you could be affected within each condition.  There are those who have acute episodes of an illness. It is horrendous but time limited and when someone emerges from it they may never have another experience like it again.   There are those who have recurring and relapsing illnesses – each episode will resolve itself but the person knows it will come again, not knowing when or how but that it will come.

Then there are those who live constantly with an illness. Compare to those who live with constant physical pain – you stop telling people how much it hurts because people like to hear about how things are improving, not that life is just day and night of background pain.  The same goes for emotional pain, the agony of the soul.  We may get tired of saying that it hurts so we respond in a neutral way to ‘How are you?’ with something like ‘plodding along, and you?’.  So you may not realise how hard it is for some to do the basic things day by day.  Physical and mental illness can have invisible symptoms, but symptoms that drain people and make doing the normal things a great achievement.

Constant illness can be mild or massively intense, it may lead to living life with a mental limp but still striding out there. Or it may lead to life totally shaped and consumed by the illness.  Some will not be able to live day by day without support. No matter how much the closure of the Victorian asylums was needed, there will always be the minority who need residential levels of care.

Please don’t assume that knowing one person’s experience of an illness, even your own, tells you about someone else’s experience. We can have the same label but very different experiences, we may be stable, well, for long periods but still live under the shadow of the relapse.  We may learn to live with the permanent mental limp. And for some poor mental health is terminal.  This is the sad reality.

If you want to help or walk alongside us then ask us about our own experiences, and listen to what we say, helping us to dare to say what we need to. And if this is you may you have the strength to ask for help and you will be surprised – 1 in 4, we are everywhere, no-one should have to face poor mental health alone.

Asylum adventures, and memories and needs today

Today Gabi and I went for a walk on paths around the former, now mostly demolished, asylum at Storthes Hall, Huddersfield. It set off my thoughts anew about the life of the asylums. Before most of the meds we are offered today, and before they became a dumping ground for those who were 'morally' suspect but mentally well (the woman pregnant outside marriage for example) - the architects designed for health and hope.   Today where they are still in use the buildings have declined and represent a different time. But when they were shiny and new the asylums were in the country, wards designed for light and air, to be self sufficient with farms and their own laundries etc. Free labour or Occupational Therapy? Grand halls for celebrations, balls, and meals.

The straight jacket and the padded cell offered ways to stop a patient hurting themselves - and were miles ahead of the previous chaining to a wall. It could be argued that today's medication is used as a drug based straight jacket, and not so far away from the past when times are desperate and someone needs to be kept safe.

All these reflections prompted me to pull out the information I got from local archive services in Surrey about the asylum my great grandfather worked for. He started in the epileptic colony in Epsom. I assume that without the meds now available that people had uncontrolled fits, and
increasing damage to the brain, but they were noted as different to the other patient groups. My great grandfather worked there before the First World War and returned to it after his war service. In time it became a space that accepted voluntary patients with hope of recovery (a novel idea previously) early users of talking therapies, then later became a home for those with learning disabilities.

Looking through that information again I noted a comment that 'From 1918 - Jan 1927 the institution served as a war hospital and treatment for neurasthenic ex-servicemen and administered by the Ministry of Pensions'. I don't remember looking it up before but was curious about what 'neurasthenic' meant.   Google replied with -

Definition of neurasthenia

1. :  a condition that is characterized especially by physical and mental exhaustion usually with accompanying symptoms (such as headache and irritability), is of unknown cause but is often associated with depression or emotional stress, and is sometimes considered similar to or identical with chronic fatigue syndrome

I found that fascinating - that back then they had a name for something that looked like Chronic Fatigue Syndrome or ME, and ex soldiers were prone to it. ME was also linked to 'Gulf War Syndrome' as soldiers returning struggled with it. Labels of things that aren't understood are very woolly, and neurasthenic might include some expressions of what today we would consider Post Traumatic Stress Disorder (PTSD).

Whatever it described I am left pondering the possibility of my great grandfather working with those having CFS as I have experienced, and as the hospital went from epileptic colony to general mental health, maybe with those with bipolar (or manic depressive as it used to be known).   Probably just imaginative thinking, but within possibility. He reached the rank of chief charge nurse.

Today mental health services are too often effectively 'flounder in the community' rather than the dream of 'care in the community' that was plugged when the big hospitals closed.  The mass institution is outdated, and the wider population needs to know us not be protected from us, but the replacement is underfunded and leaves people being abandoned in crisis because the beds are not there when needed, and all the services designed to intervene before crisis are simply not there.

We may frown on the victorian ways of responding to poor mental health and the decades following, but in the asylums there was a massive investment in care, a vision to improve from the workhouses and chaining up, a vision of country air, and meaningful occupation.

We need vision and investment again. instead we get a few dregs...

Ill enough yet not as ill as....

No-one wants to have the worst form of any illness or condition, yet it can be a strange place to have it enough to interfere with life yet being in a much better situation than those you meet on the support forums.

I had this when I had Chronic Fatigue Syndrome (CFS/ME) my life was drastically limited by the exhaustion that is beyond describing, but because I could still have some life and cope with some activities, because I recovered enough for a steady life, I was considered y some as not really having the condition. Those who were left bedbound and light adverse and facing those who want to dismiss their illness as shirking were very defensive against those who had a form of recovery as they felt it undermined the depths of their experiences, and the burden of 'my friend had... and did.... and all fine now'. To be fair I believe that CFS/ME is a mixed bag of things that have related symptoms and as not understood they get lumped together when different things may be going on.

I have now been diagnosed formally with Bipolar affective disorder. This matches what I recognised when I read about it several years ago. I knew I didn't fit the more extreme form and went through various visits to different psychiatrists (a string of junior psychs who are on rotation so next appt I saw a different one). I was told by one that because I was not sleeping around and/or in deep debt then it couldn't be bipolar, yet the extreme form is not the only form and even then the effects vary massively.

It feels good to have the affirmation of a diagnosis - that what I experience is acknowledged. That is powerful, I still remember the GP visit (after months of chaos and even college arranged therapy) when I came home with the label 'clinically depressed' I was not useless I was unwell.

Yet on the online groups for those with bipolar I am on the mild end of the spectrum, and I feel that I don't belong there as a peer. yet I do live with the implications of my own health and when it falls short. It is a strange place to feel that you don't belong with the very ill but  at the same time don't fit with the healthy either.

Of course I am grateful not to face the darkest places that others face day by day,  but to be ill but not ill enough is a strange middle place where you neither belong in one place or the other. On one level my diagnosis is an affirmation of my struggles to those I work and live with and explains why I am like I am. On the other hand I feel a stranger to the world that others with the diagnosis live with, and the support I yearn for is not there as I am in a better place than many.  It is a strange place falling between two stools.

'A rose by any other name' - receiving a Label, and having a plan

I remember my English teacher Mrs Storey (yes that was her real name, destined for that job?) when we were doing various bits of Shakespeare. And yes Romeo and Juliet was one of those we looked at 'A rose by any other name would smell as sweet' - you are who you are regardless of the name that you carry, yet for them the names got in the way.  For others though names can be affirming, recognising something important to them.

Mental Health labels can get in the way for some - and they rightly protest that they are more than the label, more than the diagnosis. Yet for some of us the label can become a positive, something life affirming, that describes what we know and shows that someone has finally heard us and acknowledged it too.

At the end of last year I finally had a psychiatrist who listened to my history and took meaningful questions. He said that he felt bipolar explained my experiences - more depressions but with significant times of feeling full of potential and ideas but in a driven, must act now way that is not peaceful, nor productive as the next idea jumps in before following up the one before.  But the psych stopped short of formal diagnosis, as not seen me in that hypomanic state.

My next visit was with a new consultant (having been locums before that) - from that visit and then again a week ago, with notes and some pointed questions, he declared he was confident that I am affected by 'Bipolar Spectrum Disorder'.  Given the vagaries of mental health diagnoses a consultant being 'confident' is about as solid as it comes.

So how do I feel about the label? Relieved to have been heard, to have had not just my experiences but also my own reading and self understanding has been validated.  I can recall the feeling when in the biggest depression crash (at college after a prolonged high period) I finally went to the GP and was told I was in clinical depression. I came back with a strange level of temporary positivity (well compared to where I was) it was not me being a failure as a human being but a valid recognised illness.  This week was not as dramatic but had some of the same sense.

There are consequences of labels though, and I have filled in the form to declare to DVLA as bipolar is one of the notifiable conditions, it should be straightforward as them writing to the psych and him confirming I am safe to drive, and many conditions from types of diabetes to heart conditions have to inform the authorities. But it is a very formal way of embracing a label.

Plans - the consultant I am with is very good at giving a sense of confidence in the plan he has for treatment. He talks confidently about how getting to a certain dose of Quetiapine whilst tweaking the antidepressant should really help me. The hiccup along the way is that increasing the dose of Q has side effects of deep sedation until the body adjusts to it. Hence this post taking days and days, with about 10 hours total sleep and up to the same again in vague grogginess leaves not that much time fully functional.

I am grateful to have supportive people who have helped me look at my diary and how to adapt during this side effect season that could be a couple of months. And I am very aware of the privilege of being in a role that has so much flexibility.

But if you see me looking even more vague than usual then blame the drugs, but we have a plan!!