Category Archives: disability

Testimony – the 2020 Edition

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This is the text of my Going Deeper devotion for today.

It is so easy to sit in church and think everyone else has got it together or is having a great life, only when we start sharing our stories together do we realise that others may have been in a similar situation to us, or are in that place now.  By sharing our stories we can help support one another and strengthen our faith and the life of the church.

We all have a story to tell.  Our life and journey are unique, but will touch on common factors with other people.  Our faith story is no exception.

In his brilliant sermon to us on Sunday morning, Trey Hall encouraged us to tell our stories -so, here is (part of) mine.  I did share this in written form when we first came to here, but this is an updated version.

When I left school I worked for our local church as part admin part outreach worker which really developed my call.  Fast forward to when our children were born and I was very fortunate to be able to be at home with them and was perfectly content with doing that and volunteering through church – until God had a different idea…

Thus, I became a Circuit Minister in 1999.  Aside from raising our sons, I felt as if I was doing what I was always made to do.  I loved it.  I got to meet all kinds of interesting people of all ages and talk about God with them, I had the massive privilege of being with people at significant times in their lives, I got to work with great people with God and we were doing some new and exciting stuff.  We were happy and settled.  It was hard work, but the blessings were immense.

Then in March 2005 I got proper flu.  Although the flu symptoms went after a few weeks, I was left with an awful chronic cough that also caused hoarseness, which is not much help when your voice is your tool, and breathing problems. I was constantly exhausted and had various other symptoms, but the cause was never quite pinpointed.  I visited various consultants and no one could really offer me a diagnosis or a real prognosis – but it meant my life had turned upside down.

I had several trial returns to work, fully supported by my GP and the Circuit, but wasn’t able to sustain it.  Eventually it was concluded that I was going to have to retire on ill health.  At 41 and with two teenage sons, this wasn’t quite how we had envisaged life going.

I guess it should have been a scary time, but I didn’t feel it.  Partly I was focused on being ill and trying to find a way to live with this new reality, but I never lost a sense of “we do not know what the future holds, but we know who holds the future”.  I felt such a strong sense of God holding me and holding whatever was to come, however unclear that seemed.

So we moved out of Circuit life.  I was left with the new reality of feeling that I no longer had a role.  I couldn’t do any of the things I used to love – not just work, but everyday life.  But still I felt that God had called me to something different, to be a Minister in a different way.

Unfortunately as the years went on my symptoms multiplied and it became clear that there was something very specific going on, not just post-viral problems.  I was able to do less and less.

Eventually I was given a diagnosis of Sjogren’s Syndrome, which is basically effects every part of the body that produces fluid.  This is a brilliant illustration of where and how it effects the body,

but for me as well as the lung issues, it effects my joints, balance and concentration/processing (if I don’t give a sensible answer it’s because I’m trying to process the question and what the answer is), as well as giving me dry eyes (with vision issues), dry mouth (which gives difficulty in chewing and swallowing) and awful skin.  I find sitting or standing for long hard work and struggle with energy, everything is an effort and I struggle if I try to do anything for more than an hour. I have little spare energy for anything I might want to do, having to concentrate on what I really need to do.  I also have to be very careful what clothes I wear so they don’t cause me any problems.  As anyone who has spent more than a few minutes with me will have noticed I am constantly drinking and putting in eye drops – and I have an assortment of other medications I take that try and keep on top of the symptoms – though nothing can cure it.  That is my reality.

Over the last couple of years as my symptoms have increased and effected more parts of my body, it became clear that I was struggling to live in a house and I wasn’t very safe on the stairs.  We are very fortunate to be cared for so well and were able to find a bungalow to live in.  That has made our lives so much easier and we believe that God has brought us here with a purpose and a place. 

Well… that was up until COVID-19 arrived in our lives, and the church had to find a new way to be.  Although COVID has had its challenges, for me it has also been an opportunity to rediscover my voice and my ministry.  I am so grateful to Sean for inviting me to be a part of the team that creates these Going Deeper devotions.  By recording slots in my own time and my own space and with the ability to record in tiny chunks and put it all together, I have been able to do what I haven’t been able to do for 15 years and publicly lead God’s people in worship and prayer.

So, just when I was wondering what I can do, what role there is for me any more, how God is going to use me, something new came along – and I am as surprised as anyone else.  My ministry has been in some small way, which to me is a massive way, been given back to me, my life, faith and spirituality have found a new path

The last few years have not been easy, there have been times when I struggled with not being able to do what I enjoyed or even the basic tasks. There were times when church was the place I most needed to be – yet the hardest and most painful place to be.  There will no doubt continue to be those times and on bad days it can be heart-breaking.  But God, his arms, his love, his hope and his peace have the only thing that held me together. God wrapped his arms of love tightly round me and gently held me.  God is in the reality of where I am and continues to work in and through it – and me.

I hold tightly always to the words of Habakkuk 3:17-19:

Fig trees may no longer bloom,
or vineyards produce grapes;
olive trees may be fruitless,
and harvest time a failure;
sheep pens may be empty,
and cattle stalls vacant—
18 but I will still celebrate
because the Lord God
saves me.
19 The Lord gives me strength.
He makes my feet as sure
as those of a deer,
and he helps me stand
on the mountains

Life does not look like we anticipated it would and is a struggle every day.  Having a chronic illness that effects every part of your body is exhausting and frankly mostly sore, but God is with us and continues to work. I may not be able to much physically, but God still is God. God saves me, holds me gently and gives me strength for what he calls me for and to.  God still calls and still uses us.

May we each know that in our lives.

“It’s Not Church Without The Singing”

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This is meant to be an encouraging post for all those who are worried about worship without no singing, or feel that it just is not church without some element of singing. After all, Methodists especially are known to be ‘Born in Song‘. As churches start to go back to the buildings, at least in part, but without being able to sing – how can that be worship?

Music, and particularly singing, have always been a big part of my life. Indeed my mum’s pearl of wisdom to my husband when we got married was, “If she’s not singing within a couple of seconds of putting her feet on the floor in a morning, you are in trouble! She’s either grumpy or ill”.

Music has always been a major element I used in leading worship. So often a song can say what you have been struggling to. Picking hymns/songs always took the longest part of preparing a service, to ensure that they carried and enhanced what was being said and offered to God.

So, I can understand the feeling of people who cannot comprehend worship without music, and cannot imagine what it will be like, and how it can be true worship at all. But, we are having to find new, meaningful ways of doing so many things – and different does not always mean worse, we can find a new worth and value.

When my illness first took hold fifteen years ago, and probably the thing that initially immediately stopped my ministry of preaching and leading worship, I lost all power to my voice. As anyone who has heard me speak will know, my voice goes hoarse very quickly when I start talking, especially at any volume, and my struggle with breathing makes it very difficult to regulate even talking. If I need to talk for any length of time, even in conversation, my throat aches so much for days afterwards. Pre-recording at my pace, with lots of gaps no one else sees has become an opportunity for me to do some small parts of worship again, but it is not something I could do live, or frequently. Singing therefore is impossible.

Hence why this is, I hope, encouragement to those who are struggling with worship with no singing. At first I hated not being able to sing. It wasn’t me. Singing was how I expressed everything in my life (if we could have Pamsperambulation – the Musical, we would!), including my worship of God, and I was bereft without it. But I am here to tell you that it is possible, you can get used to it, we can find other ways to share our worship with God. It may take time and effort, but the new ways that we discover may offer a different slant to our worship, a new facet to our relationship to God.

One of the things I have found is that the less noise I can make, the more I can listen and hear God. God get’s a chance to speak, because I am quiet!

I am certain there are other people for whom singing is difficult, or uncomfortable for varying reasons, or actually it is just not their thing.

So, please don’t despair, don’t think this is the end of worship – we may yet discover a richer seam and a new encounter with God – because after all, worship is about God and not the method.

Basically, what Matt Redman says:

Unlocking – The Realities

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Covid-19: The UK Government's Communications Own Goal

I am continuing to reflect on why I am finding coming out of lockdown and shielding much harder that I found being in it.

When we were all locked down, there was a huge element of ‘all being in it together’. No one could go anywhere (that was not medical or food shopping), because there was nowhere else to go. That fact that my illness and disability means that I could not go out made little difference, because no one could. I was no longer ‘missing out’ on anything, because everyone was. There was nothing really to miss out on. Though I realise it must have been far more frustrating for the able bodied with energy to burn and social contacts and hobbies to maintain.

(I am acutely aware that many people did have to continue going to work to keep what was needed in society going, who could not choose, or be instructed to stay at home. They had to go out, risked their lives doing so – and I am incredibly grateful to them.)

There was much talk at the time among the chronically ill community about how now everyone knew what it was like for us being stuck at home pretty much all day every day, relying only on the internet for social interaction. Hopefully that part of the experience that will be remembered.

Then as lockdown began to ease, places began to open, possibilities were there again. And along with the dilemmas coming out of shielding brought, were the knock backs.

As other people begin to return to A Normal, came the whole new realisation that I was left out again, remembering how isolated life with chronic illness can be. Things are happening that I cannot go to, however much I want to. In the online support that had grown, even if just in text messages or social media posts, people are missing because they have gone to find their new normal. I absolutely do not begrudge them that, they have lives to be getting on with and I would be if I could, society has to get back to some way of functioning – but it is beginning to make a massive difference to those of us ‘left behind’.

It is a reminder, if I needed it, of what I am excluded from, what I miss, what I can no longer do. None of this is helped by the fact that my health has deteriorated, unrelated to lockdown, but concurrent with it. I cannot even begin to return to my normal, because my normal is a different, lower, level now. But even if I could, the risks of coronavirus feels too risky for some of what I might have been able to enjoy before, like a trip to a coffee shop, unless I can sit outside away from a crowd.

So, all power to those who are finding a way to get back to some kind of life. I genuinely am delighted, but please don’t forget those of us whose lifestyle and restrictions you had a glimpse of for a few months. We are not your responsibility, and you should not feel bad for living what life you can again.

But perhaps there are some lessons that have been learned that can be carried onwards:

  • remember something of what it was like to be stuck at home with nowhere to go
  • remember the connections you made and don’t leave them behind,
  • remember all those useful tools you have discovered that enable people to connect with what is happening from wherever they are and continue to use them with those still locked at home.

Meanwhile, I have to find again, the value and worth of my restricted life, outside of what everyone else is, or is not, doing. And I am very grateful to all those who are a part of my world and the life that they can get on and live.