I am broken.
My most recent hospitalisation has wrought some changes that are as devastating as anything I have faced hitherto. The medical opinion is that my recurrent bouts of pneumonia (I have been hospitalised five times in the last twelve months) are most likely caused by me aspirating food or saliva. Muscular dystrophy has compromised my ability to swallow safely and choking episodes can result in food and drink (and saliva) going down ‘the wrong way’. Whilst I can’t do much about the saliva I can cut out the danger from food or drink by taking ALL my nutrition via a feeding tube, and for now that is what I have decided to do. But it comes at a heavy price.
Pause for a second and think about how much of your life revolves around enjoying food and drink in a social context – family meals, trying out a new restaurant with friends, a shared meal with colleagues at work. Possibly the cruellest loss of all is the ability to savour a BACON SANDWICH! (I made that point to a medical student when I was in hospital, but she seemed less devastated by the thought than she should. She was, though, a vegetarian and we never found a veggie equivalent to stir her emotions in the same way).
Worse too is the extent to which eating attaches itself to invitations to other people’s houses – ‘come and have supper with us’, ‘ we are having a get together to celebrate …’. Yes, I can come, but please don’t worry about feeding me, I’ll just sit here and watch you enjoy yourself.
And it is not just me who is affected. This change profoundly impacts Sally too.
A second development, is that my voice is now badly affected, and some days I find it very hard to engage in any form of conversation at all as I open my mouth and no words come out. Coupled with the difficulty I have lifting my head, increasingly people are talking to Sally about me, whilst in my presence, rather than to me. I find I am rapidly disappearing from sight, like the Cheshire Cat in Alice in Wonderland.
The sum total of all this is pretty bleak at the moment, especially as Sally is now having to hoist me places as I have also lost so much mobility. Any sliver of independence I was hanging onto has been totally shredded.
I look at what is left: I can still write and use my brain and I still have my faith – but that feels more or less it. Like the Cheshire Cat, I will try and share what wisdom I have while people are still prepared to listen, but beyond that, what. Yes, I know I’m loved, and that is a precious gift, but this state of affairs is pretty rubbish to be honest (other, more earthier expressions, are also available).
My wonderful wife has embraced a new expression ‘it is what it is and we need to make the best of it’, which is itself a statement of immense grace from someone who in the past found it hard to let go of disappointments. But even with that positivity the road ahead looks generally dark and unyielding. In the words of the song ‘Star Trekkin’ – ‘Its life Jim, but not as we know it’.
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I’m so sorry, Ian. Thank you for using your talent for writing to inform, educate and entertain us all.
Stephen
Hi Ian,
I cannot begin to imagine how challenging and difficult this all is and yet I still hear strength through your words. You will never be invisible to us.
🙏🏽 Ruppi
Evening Ian
I can’t imagine how you find the strength to deal with all these awful challenges being thrown at you, and then to write about them with such equanimity.
So there is another thing you should add to the list of the things you can still do – you continue to inspire all of us in the way that you still retain such grace and resilience in the most trying of circumstances. Thinking of you and Sally.
I am so sorry Ian to hear how very tough things are – I can definitely think of a much fruitier word than rubbish. It is indeed totally rubbish. It is hard to know what to say. As ever you express yourself so incredibly well – (always some humour / light in the midst of the darkness) and I just can’t do the same. But know this .. I am thinking of you and Sally and send you lots of love.
Ps thinking about vegetarians …. I wonder whether it would be nuts …?
Do nuts carry that aroma that drags you in off the streets or make it worth setting off half an hour earlier for a meeting so you can stop for a bacon sarnie and a cup of coffee en route? I think not.
Well …. when you put it like that!! A dry old nut just doesn’t have the same appeal.
As ever Ian, you are in my prayers. I am so sorry to read how difficult it is now for both you and Sally.
The first three evenings this Holy Week we have been treated to some wonderful teaching at Bristol Cathedral by Paula Gooder. One or two of the strands of thought have spoken to me from her preaching, her stories and the sung scripture and canticles. In particular Jesus says I will never leave you, I am with you always. You also know that because of your faith.
I can not begin to imagine how you are coping with all this. Thank you so much for keeping in touch.
We flew to Washington DC on Maundy Thursday and are now staying here visiting family until after Easter.
David
Thanks David. Great to hear from you.
You are incredible Ian and it’s good to talk about how your condition affects you. Such a profound change needs time to come to terms with but I know you will face this as stoically as you always have. I wonder if you might be able to tolerate a bacon sandwich milkshake 🤣. Sending all my love to you and Sally.
Hi Nadjie – now there’s a thought! xx
Hi Nadjie – now there’s a thought! xx
Oh Ian.
Keep finding ways to express yourself. We might miss having a bacon sandwich with you, but we would miss hearing from you so much more.
Hi Ian. I don’t tend to leave comments on your posts but I read every one of them. I’m so sorry about your loss of bodily functions over the years. In some morbid way I appreciate hearing your perspectives on life, as you know it, as it makes me appreciate my life more.
In the latter years of my Dad’s life, when he was confined to a single bedroom, except for the odd occasion where we’d take him out in a wheelchair, he once commented, “look at all those people, walking about like it’s nothing!”
You’re not that far gone yet, but your perspective on life very much matters. No other creature in the universe sees through your eyes, hears through your ears or feels what you feel. While you are still able, I look forward to reading however more installments of Living In Hope that there are.
Much love and respect,
Dave Wright
P.S. On the subject of foods that vegetarians might savour, how about freshly baked bread?
Yup, I think that qualifies.
Thanks David. I know precisely what your dad meant. I watch people walking up stairs without holding onto anything and think ‘how do they do that’? I also find it very hard to watch clips of people falling over.
Wow Ian thanks for sharing your thoughts. We are still very much interested in reading them. I would very much have liked to offer you a stack of bacon sarnies but short of that I can assure you I will savour any future bacon sarnies with loads more appreciation.
So Ian, as I have read re-read and thought about and prayed for you and Sally, I have arrived at 1 Cor 3v11-15.
It is clear the foundation of your life is Jesus Christ. What comes out of your blog as the fire increases is that you have built all through your life using gold, silver and costly stone.
As you say in your blog ‘look what I have left, I can still write and use my brain’. And that is the gold and silver we receive in your blog. When you say I still have my faith that is the costly stone so often held in the gold and silver clasp.
So my beloved friend, I don’t understand the fire you are going through but I can see from our visits to you and the power of the words you write that you still inspire many including me.
So use that amazing Holy Spirit inspired gift and continue to write your blog. Write to people you have worked with and people you know. Write to church leaders and those of influence. Write a book if you are lead to……..
Through your writing you challenge me to make every day count. So please please keep using that gift my amazing friend. Much love Phil B
Wow, and thank you xx
Yes I agree with Phil, write and say what needs to be said. I think there is a book coming Ian.
I will continue to look forward and read your thoughts which always inspire. With all our love.
Happy Easter and praying. Keep inspiriting with your thoughts.
We love ya Ian (& Sally). God be with you n we appreciate you sharing, being honest, and we think of you often. Hugs, Terri n Keith
Even amid the challenges you’re facing, your unwavering faith and hope shine brightly. They’re the bedrock of your resilience, guiding you through these difficult times. We’re holding onto hope and keeping both you and Sally in our prayers, believing in better days ahead.
Hi Ian, I see your strength in every word you write. I hear your frustrations, but see you holding on to your faith. Your writing of your blog is a living testimony, a true glimpse, an honest heart-to-heart, a courageous sharing of your life. When I speak with you I am always inspired, and challenged. Your words are a legacy, because your faith in God – gets you through every day. May we all gain a better appreciation of life. You are seen and loved. You may have less of a voice, but never give up your inspired writings.
Dear Ian , I’m so sorry to read about how hard life is for you and Sally. I can only echo what other people have said about how inspiring reading about how your life has unexpectedly developed over the past few years is, and the grace and faith that you always show. You were the best boss that I’ve ever had in my life – I learned so much from you working with you and I am still learning so much from you. You are still a role model. I always remember something you said to me when we were working together – never lower your values to anybody else’s whatever the situation . And you have kept your values. Whilst now it seems that ironically physically you can’t hold your head high, figuratively you surely can – you have given so much to other people in your life and you can be proud of the difference you have made. I hope your brain continues to function as your body weakens – a lot of people are by your side in spirit . Love Amanda
Thank you Amanda. Much love x
Thanks Ian for being so candid. One can’t help but wonder at God’s sense of humour in sending you a vegetarian angel! My thoughts and prayers are with you and Sally. Despite your challenges I hope you enjoy a blessed family Easter.
Thanks Andrew. Looks like our get together is going to be even harder to arrange and especially so now Emma has moved.
I was about to leave a comment but realised that both Ruth and Dave Wright have already said what was on my mind. And to plagiarise Phil B – Through your writing you challenge me to make every day count. So please please keep using that gift my amazing friend.
Not sure about a bacon sarnie ‘shake’ but it would probably be better than a plant based ‘turkey’ burger or tofu ‘sausage’ roll.
Richard & Sharon
Dear Ian, Thank you a million for your post, it is extremely challenging for you (practically and emotionally), and really really appreciate the work you put into creating it and sharing how you are feeling. How are you today? Am thinking of you. Hope you got some positivity from the Easter weekend. How are you finding it not being able to eat? I broke my jaw when I was 18 and couldn’t eat for 6 weeks. I lost a load of weight (which was great for me as a teenage girl – not so good for you). I remember how I couldn’t be bothered to do anything. I really feel for you, and hope you can find the energy and motivation to keep on engaging with the world and acknowledging and accepting it when people ignore you or seem to talk over you/about you. Sending so much love, Nicki xxx
We went to a drinks reception at a friend’s house yesterday. I parked in the kitchen in front of the table laden with nibbles. It was torture 😱
That is complete torture. Did you decide to park somewhere you knew would be popular, and suffer the consequences? Hope in future you can find a halfway house, somewhere people are passing by, and it’s more comfortable for you to look at.
Do you have a nice place to sit during the day? Fingers crossed the weather will soon improve and give you flowers and birds and rats to entertain you (those are the entertainments in our garden anyway!)
Lots of love and thinking of you
xxx
We have rats too! The joys of living next door to people who keep chickens.
Our bedroom windows go down to ground level and we woke up the other day to a rat with his front paws on the glass, peering in. 😳
Hello Ian,
I have read your epic blogs, and have laughed till l cried, at rent a choir, to dark looks at people eating bacon sarnies. I wonder if we might start dreaming up ice-cream flavours. Turkish delight, tickle you?
I always remember when we worked together, your grace, and sense of fun. A favourite moment being, that you wished there was a raspberry button, on a keyboard that you could press, and send on to people who were, well messing about. To this day, l still giggle, when l remember that one.
Your light shines brightly. Jesus sees you. He’s paying careful attention to you. Light and dark, remain a tension and you blow up the dark, filling everything with light.
In Matthew 26:37-39, Jesus was honest about how he felt going through the most painful moments of his life. He also allowed God into the depths of his emotions as he wrestled in his prayer.
Your writing is honest and brave. An amazing gifting and an example of how to be vulnerable, which illuminates a path, giving strength to so many.
Laughter is never far from your twinkling eyes. Yep, we will also blow some raspberries at dud things in life too.
Love,
Neena
Neena, how lovely to hear from you, and thank you for your encouragement. Life-filled words, as ever. x
Ian, once again, thank you. I’m filed with sadness but; more so this time, anger. You used to tell me that you didn’t like to describe yourself as a Christian: instead, you were a follower of Christ. Well Christ has something to explain in terms of his rewarding you, Sally, and the children with such cruelty. But we needn’t have that discussion again…
All I want to repeat is that your decency as a colleague and a friend has shone through the nineteen years I’ve known you. When you abandoned me at Barnardo’s I wrote to you and told you that the thing I loved about you as a Finance Director was not your accounting abilities but the way I could depend on you, whenever I was uncertain about the right thing to do, to point me in the right direction. You’re a good man.
Martin, thank you for your gracious comments. However let me pick up on your cruelty question. Jesus doesn’t promise to save us from bad things, but rather promises to walk with us through bad things. I have no more ‘right’ to be fit and well than anyone else but I have the comfort of not being alone
Hi Ian
I wanted to write this note as someone you never knew but I admired your leadership from a far.
I was sitting this evening in a pub garden and was randomly talking about leadership. You popped in to my head on this topic. I was a young professional working in the IS department at Barnardos in 2003 that never really had close interaction with you – you appeared to me to be a great leader and an inspiration. I can’t pin point an example of this but you left that last impression that good leaders do even from a far – which I still hold today.
A random google of you lead me here and I wanted to share this reflection with you as you continue to inspire those you don’t even know.
Thank you for that.
Terry, thank you. I am moved by your comments. I hope Barnardo’s was good to you and gave you skills to take into your next role.