When you are facing a flood it is sometimes difficult to know if the waters are still rising or if they are subsiding. The trick is to drive a stick into the ground near the edge of the water and to check at intervals to see if the stick is being swallowed up or being left high and dry as the waters recede.
I am facing a flood of increasing disability and I thought it would help to take a moment and drive my own stick into the ground and assess whether this muscular dystrophy is gaining ground or is in abeyance. The overwhelming evidence is that the flood is still rising. I might still hope that a condition that suddenly switched on in my late fifties might choose to switch off again, but the stick shows that is not the case and I must plan accordingly.
This time last year, during the first lockdown, I was able to walk the circuit around our house in about an hour, at times unaccompanied. That same circuit now takes an additional 20 minutes and I need to hold onto Sally’s arm for stability while I do it.
This time last year I was generally able to feed and wash myself with little trouble. I now find that I need to move my mouth to my food, rather than move my food to my mouth as my arms struggle to lift a fork up and, if I have been working my arms a lot, I sometimes need help to lift a cup to my mouth. Sally is increasingly called upon to finish the last bit of wine in my glass because I can’t tip it back far enough to drain it: a responsibility that she ‘endures’ with alacrity.
The worst effect of the increasing immobility is the loss of confidence that accompanies it. There is a constant battle going on inside me between my mind which says ‘take the safe way’ and my spirit that says ‘don’t give in’. The weather (and lockdown) hasn’t helped of course, but I find I am increasingly reluctant to test myself on Molly in challenging conditions and am more conscious too of the energy that riding Molly drains from me.
At the start of the year I took on a volunteering role with the Diocese of Bath & Wells, using the experience and skills I gained in my working life. The time commitment is not insignificant, which has been a welcome diversion during lockdown. The trouble is that all of that work has so far been conducted over ‘Zoom’ where my disability is largely invisible. I am now facing the prospect of finally meeting my new colleagues face to face when my disability will, for the first time, become apparent and I am struggling to imagine what that will feel like because I have never been there before. This is indeed a moment for my spirit to shout itself hoarse and tell my mind to ‘bugger off’.
Last year a friend gave me this woodcut to hang on the wall in our kitchen. In general I am not a great fan of such things but this one really spoke to me. It is a verse from the book of Joshua in the Old Testament and recounts the moment God encourages Joshua to keep trusting, just before he leads the People of Israel across the River Jordan into the Promised Land.
‘Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go’.
The words stare out at me as I sit at the table eating my meals. Between dips of my head towards my plate the verse stirs my spirit. It is possibly the most important thing in my life at the moment because it reminds me, daily, that God is with me wherever this flood takes me and that I don’t need to be afraid.
Thanks Ian for your update – always read with concern for you. As ever, you are in our prayers too.
Thanks David. Hope you are keeping well
Thank you so much for being courageous enough to share so candidly your journey. It is sooo important for us to understand each other’s journeys and helps us all to grow. Sending you loads of love & prayers. Xx
This is a really powerful read, Ian – and one of my favourite verses, so just reading it again today did my heart so much good, too. Miss getting to see you and chew the cud with you over a pint of beer. Will be praying for you guys on your journey. You are a man of great courage and who is still inspiring many!
Yup, I miss those pints too … and using beer mats to explain organisational structures 😉
God bless Ian: encourage your new colleagues to read your blog and they will have no doubts they are fortunate to have you as a volunteer.
As always a privilege to read and ‘share’ the journey with you… prayers are constant for that ‘switch’ to turn and in meantime praying you have supernatural strength for the journey. Your work colleagues are fortunate to have you on board … what an asset you are to everyone you meet.
Ian this is such a raw, honest description of your life. That verse from Joshua has always meant so much to me personally . Your inspiration , encouragement and determination are just some of the many qualities God has given you. Remember the few verses before this too “ I will never fail you or abandon you”.
Thank you for sharing – we miss you Gill and Maurice x
Thanks Gill. You have done your fair share of encouraging over the years too 😊
The best visual reminder God has given you of his daily outpouring of love for you is Mrs T who will be strong and courageous with you. You may have a number of other supporters on your side too. Xxxx
Indeed, but your gift is a daily blessing to me xx
Sending love to you and Sally. Your colleagues are so blessed to have a man such as you on their team. You are an inspiration. I will join you in your shouting “bugger off”.
Ian, you are truly bearing witness to your line in the sand – those words now cut not just into wood but into your being – through your daily struggles, joyful character in adversity, inspirational blog, and love for Sally.
And may your line in the sand be re-enacted in the face of blaze and beasts, much like Daniel. Take care, I am praying for you too.
Thank you Ian for your words and insight again. You continue to teach me a lot about leadership and perseverance and I continue to look up to your example with admiration and a desire to make every moment count. Lots of love to you both xx
Thanks for your honesty Ian – inspiring stuff. You are in my thoughts and prayers and look forward to actually getting together when you in Sandridge and it is allowed.
Soon I hope!
Searingly honest and so thought provoking. I’m always inspired by you , Ian , by your writing and your spirit x
I just found your blog, as I was looking up the words “Living in Hope” as the title for a book I was planning to write. I had been down and was looking for encouragement to keep going when it seemed like a drudgery to be alive with no real goals or dreams to look forward to. My only hope had become the future eternal rest in our Father. I’d like to share with you what I learned from my study to find meaning and purpose.
1. We were created to walk with Him, in agreement and mutual friendship, closer than marriage.
2. His desire for this relationship with us was so precious He sent His Son to redeem us back to Himself, shedding human blood to atone for our sins, so we could have eternity with Him as joint-heirs.
3. Through our belief in the redeeming blood of our Saviour, we have been brought back into the close relationship He desired.
Now we desire Him again after walking independently of Him for so long. The drudgery of life, which seemed so burdensome, has become a joyful journey because we are back with our best friend and Father.
Being strong and courageous knowing He is with us and never forsakes us is living in hope, as we look forward to every day with Him. He said that he had overcome the world, so walking in it with Him should make us fearless.
Thank you for your post. It was very helpful to me personally. I love how our Father speaks through others to encourage us. My prayers are including your family now.
Thanks for your encouragement Elizabeth.