Pete once said to me, “Life is precious for however long we have it.”  He stood by this view, even when he was at his absolute lowest.

I’d like to share an email he sent me in the minutes leading up to midnight on 31st December 2020. It was in response to a new year message and prayer I had written to both him and Mum earlier that evening, and I have no doubt that it would have taken Pete the entire 3-4 hours which followed to draft this long and moving reply to us using his specialist technology.

He was writing at the end of a year which saw seemingly no let-up in the devastating progression of his MND symptoms: the total loss of his ability to speak, to laugh or to cry; his enjoyment in offering hospitality to others replaced by the need for assistance to eat and drink himself, increasingly via a PEG tube in his stomach; the loss of his ability to support his own head and almost total paralysis of his body; his dependency on full time critical care, day and night, with no longer any brief moments just to himself in his home. He used to say to me, if only he could have just a little period of respite to adjust to each new challenge. But the rapid deterioration he experienced throughout 2019 and 2020 meant that he was forced to relentlessly adapt and develop new coping mechanisms, and it’s hard to imagine how frightening each loss, each new symptom, must have felt for him.

Considering all this, together with the added pain of isolation from family and friends and the stress of carer recruitment throughout the ongoing pandemic, I can only describe Pete’s words at the start of 2021 as totally awe-inspiring. They beautifully sum up my brother and typify his positive and selfless nature, even in the face of such suffering. To use his words below… something I myself find hard to fathom; except for knowing that Pete’s strength and thankfulness and his sure and certain hope came from the Holy Spirit of God within him and from the love of his friends and family who meant the world to him.

[I just added in a little punctuation as this wasn’t easy to do on eye gaze technology]

My very dear Mum and Nicky thank you more than I can say for your great love and huge support this year and every day of my life thus far and I so wish I could hop out of this bed and drive over to Longborough and Bournemouth and give you both the biggest bear hug. I love you both and Harry Ed and Imogen so so so so so so so so so so so much. I know that it is so much harder to see a loved one ill and struggling than for the person themselves and I want you to be at peace knowing that I am saying to everyone in the new year how much I have to be thankful for. I am not in pain and life has become so much simpler I have had a good life that is not over, surrounded by love from God and my loving and much loved family and friends and I am blessed to have the most peaceful and relaxing and sunny home with everything that I need to get through this wretched disease and a lovely team of carers who are genuinely caring, all paid for by the nhs which my tax would never have covered. And what is more my mind still works and so I can enjoy thinking and pondering life and the faith that we share that this life is not all there is and one day we will see Jesus face to face and in his everlasting love will see those we love… [a few personal names mentioned] …and we will be in wonder for eternity together. It will be so beautiful too, like Stoneleigh house garden in June, and God who has been with us through every high and low will be there wiping away every tear from our eyes so we need shed no tears of despair and only tears of the kind that are because of love. Only those who have loved can feel the pain of loss and illness and those tears bring us towards the heart of God because God is love. I know that you cry for me and I would often too if things were the other way round and I thank God that they are not. I think I am learning more and more that what I was trying to say in the beatitude sermon is true [the last talk Pete gave to students and teachers in Brighton College Chapel in 2017, which can be read on Pete's Blog noordinaryhope.org]. I would love to be free from this wretched disease but I have been truly blessed in the midst of it because it is a bit like an outpouring of love that I have been so blessed by.

So I don't think that I am hard done by and I am so so grateful for the family and friends who are prepared to go to inordinate lengths to show extra ordinary love and care for me and I think I will never fathom it p x x x