Tag Archives: living

Unlocking – The Realities

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.

Book Review: The Amazing Technicolour Pyjama Therapy by Emily Ackerman

The Amazing Technicolour Pyjama Therapy by Emily Ackerman was reccommended to me by someone else who suffers from chronic illness.  It is unusual to find a book that comes at ‘living with’ from a faith perspective, so I thought I would give it a go.

This post will review it, at some point I may write reflecting on what it says to me where I am.

Emily writes this book from her own perspective and experience of being a doctor before illness put an end to her professional career, so she writes with true understanding.  It is based, if you hadn’t guessed from the title (and I hadn’t – that’s how much brain fog I have!) around the story of Joseph – he of the Technicolour Dreamcoat fame, and the losses he had to face in his life.

There are chapters about a wide range of issues involved in facing life-changing issues.  Chapters range from working out how to get the rest that you need, family issues, work, church and faith, and a final one on facing terminal illness.  At all points practical, emotional and spiritual challenges are tackled.  The sub-title is ‘And Other Ways to Fight Back Against Life-Changing Illness’ and that is essentially what it is, a book to face the reality of where you are and perhaps find a (better) way to live with that.

The book is written with a very jaunty appearance.  An easy to read font, nice arty squiggles and some cartoons – which are very funny!  Each chapter is broken down into manageable chunks if that is all you can manage.  It is interspersed with helpful bible passages and at the end of each chapter there is a ‘For Reflection’ section, with questions to help you do just that.  Each chapter then concludes with some witty and poignant quotes.

But for all it’s jolly appearance, The Amazing Technicolour Pyjama Therapy is not an ‘easy read’.  Much of what it says is profound, and I had to keep stopping, sometimes for days, to let it sink in and work out what that meant for me.  The Reflective questions were particularly helpful with this.  This is not a book to jolly you along, or I didn’t find it so, but a book to make you really stop and think at where you are with your illness and it’s effect on your life.

Much of this book was very helpful.  However, I did find some of it a bit simplistic, for example regular comment is made on ‘choosing’ to think or behave differently.  If only it were that simple, I wouldn’t need to be reading this book!  Perhaps that’s something I need to work on… Or the comment that, “every believer will be useful in heaven” (p186), the kind of comment that I find really unhelpful, but it may be just what someone else needs to know.

I was also slightly disturbed by Chapter 11 on Healing, where I read a suggestion that sin can be the cause of our illness, or illness used as a discipline.  This is certainly not my theology.

However, it is always good for a book to have parts that bring you up short and think, ‘do I believe that?’ ‘What do I believe?’  And I was delighted to discover someone with the same analogy as mine of Sweeping Things Under the Carpet!

So, all in all, if you are looking for something to help you learn to ‘live with’ and even live well with this a useful book.  It will offer you practical advice as well as challenge attitudes.  It is going to keep me thinking for a while…

Thank you Emily for writing it.

Not That Way

Not that way Lord,
surely not that way.

I thought following you
was going to make life easier,
simpler,
better,
more blessings
and goodness,
how my life will be better
and problems will disappear.

But now you tell me
I have to think of others,
of their needs,
that it’s not all about me,
what I can get from you,
all the amazing things you’ll give me.

It’s about giving,
loving,
going beyond,
doing what you would do,

and that is going to cost

and not everyone will like it,
or the consequences of going your way.

Following you is not the easy way,
but it is the good way,
the right way,
your way.
It can be the way of rejection and pain,
but it is the way of life
truly lived.

So may I take the cross,
your cross
and follow you

Mark 8:31-38 (CEV)

Jesus Speaks about His Suffering and Death

31 Jesus began telling his disciples what would happen to him. He said, “The nation’s leaders, the chief priests, and the teachers of the Law of Moses will make the Son of Man suffer terribly. He will be rejected and killed, but three days later he will rise to life.” 32 Then Jesus explained clearly what he meant.

Peter took Jesus aside and told him to stop talking like that. 33 But when Jesus turned and saw the disciples, he corrected Peter. He said to him, “Satan, get away from me! You are thinking like everyone else and not like God.”

34 Jesus then told the crowd and the disciples to come closer, and he said:

If any of you want to be my followers, you must forget about yourself. You must take up your cross and follow me. 35 If you want to save your life, you will destroy it. But if you give up your life for me and for the good news, you will save it. 36 What will you gain, if you own the whole world but destroy yourself? 37 What could you give to get back your soul?

38 Don’t be ashamed of me and my message among these unfaithful and sinful people! If you are, the Son of Man will be ashamed of you when he comes in the glory of his Father with the holy angels.