No, I’m not talking about disability, which is also a ‘d’ word, but rather I want to talk about ‘disappointment’. It is not a story which is unique to me, and indeed there are countless people facing far more difficult circumstances than me, but it is my story and having shared it with a number of people recently it is a subject that seems to resonate with others.
I was diagnosed with a muscular dystrophy in July 2019 having first presented myself to the doctor six months earlier with what I assumed was a posture problem that just needed some insightful physiotherapy to sort out. (As an aside I have always thought that most of the world’s problems could be resolved if we were governed by physiotherapists and accountants! I will be happy to elaborate on my theory some other time).
My physical deterioration was unusually rapid – in September 2018 I had happily walked up Snowdon – 12 months later I was no longer able to drive a car. As with all such diagnoses I went through a range of emotions – shock, anger, frustration, despair – but looking back now I believe the underlying emotion was one of intense disappointment.
With just a few words of diagnosis on that July afternoon, all my ambitions, hopes and plans were stripped away in an instant. The things I loved doing would soon be out of reach: I had already been forced to give up cycling and would soon have to give up on canal adventures as well as I was no longer safe around water. My ‘ministry’ too was denied me – I could no longer provide practical support to others or play a musical instrument and my role within my family changed profoundly as well. All the plans Sally and I had for our retirement were turned on their head. And, four years on I have to admit too to disappointment that all the prayers I and others have prayed for my healing have not yet been answered either.
The question that I, and so many other people like me who face similar disappointment, must answer is ‘am I going to let my disappointment define who I am?’ Is my life going to be defined by this diagnosis or are there other ways to live a fulfilling, purposeful existence?
I have heard people with profound disabilities say that they wouldn’t have life any other way. That’s not true in my case: if you offered me my old life back I would grab it in an instance. I don’t think there is anything in my current life which is better than what I had before, except maybe that my muscle weakness provides a perfect excuse for getting out of doing household chores.
However I have found other ways to minister, other ways to connect with people and other ways to serve. I have time to share the wisdom I have acquired over the years and have taken on roles that still allow me to work as part of a team, which was always my deepest passion. The sense of disappointment will always remain, but with it too comes ‘hope’ and it is ‘hope’ by which I wish to be defined.
When I started writing this blog six years ago we decided to call it ‘Living in Hope’, partly because our narrow boat was called Hope, but also because we saw a new adventure opening up before us. With hindsight those words have proved to be more prophetic than perhaps we realised at the time.
It has been a while since my last post. If you wish to leave a comment click at the top of the page and join in the discussion.
Welcome back, Ian!
The home-made bread is all too familiar. I think we both know the depressing “thunk” it makes if we tap it on the work surface. I usually try to pretend that it is an exotic foreign type of bread, as I carve off a solid slab.
As ever Ian, I continue to pray.
Thank you for your post
D.
Thank you Ian, your boldness of thought never fails to give me something to challenge myself with. The word that jumped out at me was wisdom (and yes your point was hope). I accept that yes wisdom comes from acquiring knowledge and experience over years. But also you have a God given gift to discern what you have acquired through those years and the ability to humbly offer that wisdom when called upon to do so. Always in our prayers
Ian – your post, always thoughtful and encouraging, Will call you to arrange catch-up.
Hi Ian, thank you for taking the time to write. Your posts are aways so thought provoking. Amanda xx
Really appreciate your deep inner thoughts and honesty. Love from Yorkshire!
We too have baked building bricks similar to yours. We jettisoned one such ‘loaf’ down the garden only to find it still there several days later. Not even the foxes would go near it. You could take it to a farmer’s market and sell for £15 as ‘artisanal bread’.
Too little salt or too much water could be the problem.
Thank you so much for taking the time and effort to share your thoughts.