If goodwill heals...

And I’m sure it does.

Hey there everyone,
My own experience tells me that without the goodwill of my loved ones, it’s highly likely that I would have succumbed to my condition a considerable time ago.  It is only with their support and encouragement that I am galvanised into action every day with positivity, without it I honestly think that the frustration and disappointment would better me into submission.

If the messages of support we have received for my auntie Margaret have similar healing properties, I dare say that she will be skipping out of hospital in the morning. Her current situation is unchanged from yesterday as she is still awaiting the appropriate scans. Again, no news is good news.

Our life here at home continues unabated. Louise and her mum are quite frankly superwomen. Considering the fact that I am as dependent as ever, Oscar has been fitted with a supercharge button, the recent snowfall has prevented some of the visits by the palliative care team and Marie Curie daycare nurse, and supermarket shops have to be done on foot, they are managing admirably. Actually I have just been corrected by Louise that they are not superwomen, they are bionic women on account of their having assorted body parts replaced with synthetic versions!

As far as my condition goes, there is little change. The last two days have been surprisingly good as my swallow appears to have maintained its strength and I have felt rather energetic, relatively speaking of course. This is even more surprising when you consider that my ventilator pressure has been inadvertently set lower than the usual 18 cm.

Oscar continues to amuse with his ever-increasing speed around the house and his expanded vocabulary. It is fairly safe to say that he has his Granny Rosie run ragged, especially when you bear in mind she has been at our funny farm almost constantly since Christmas (she sends her love to Johnnie at home in Edinburgh).

That’s about it. Until tomorrow.
All my love,
Neil x


Our friends had used up every piece of holiday time they could from work and it had been getting harder and harder to fill the calendar with able bodied helpers. After a certain point in Neil’s progression, possibly after the introduction of the ventilator, it became difficult to let more people into our lives. There was so much to learn about equipment and emergency procedure that I didn’t have time to pass on. Some friends and family came purely to help look after Oscar and cook and clean, leaving me to concentrate on Neil. Others knew how to help with Neil’s equipment and ventilator, and would sit with him, giving me more time with Oscar.

My mother, Rosie, had given up her job and was now with us on an almost permanent basis. She had to leave my Dad, who was still working at the time, and life at home in Edinburgh to stay with us for an unknown length of time. Nobody knew how long Neil would live. The Palliative Care Consultant at the hospice took me aside to say to me she thought it was a matter of weeks rather than months.

My mum didn’t want to leave me after Christmas, and I’m forever grateful she was there. She had to see the fights and the bickering, the tears and heartache and just as there was nothing I could do for Neil to take away the pain of the situation, she felt the same for me.

My mum and I have now been through so much more together than mother and daughter should have to share. I don’t think there’s anyone else who understands exactly what I went through, and although I wish we had never had to share such a painful time, I know it’s brought us closer together.

My mum and Oscar now speak a language together that even I can not understand sometimes, such is the strength of the bond between them because of this time and the help that I needed as a bereaved single parent after Neil had gone. Oscar knows exactly how to wrap her round his little finger and, although she denies it, I know she wouldn’t have it any other way. – Louise (2013)

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