Day 83 wasn’t amazing eventful but I needed to rest especially before the big day tomorrow but it was a pleasant day dozing on the couch while Helen worked. There is a something very special about being able to relax and be quiet with a friend, I have felt that tranquility with Helen. Later we ambled down to the very trendy Church Street for a latte while we considered holidays and our wish lists. Later in the evening as I was sitting watching her little girl in her school show ,the thoughts came to me that will never see her grow up , I might not see her next year in this show …but I have the choice enjoying this first experience seeing her up there glorious , beautiful inside and outside, being strong and overcoming her anxieties . I could just enjoy this experience instead.
I guess to be more positive I realise that as last times are very frequent new experiences are also bountiful . The time I have on this earth is an open book for new experiences, so I must make sure that I make them possible while I still can . The making of new experiences is up to me …. Every moment is really a new experiences rather than thinking of it as a ‘last time’ experience . I can make new experiences by planning a wish list of the things I want to do as well as making most of the things planned already in my days .
So to be optimistic rather than being complacent with life I reflected on my list wish which I will share with you :
Sleep in a leafy wood in the wilderness
Read a book while gently rocking on a boat watching the countryside go by
Attend a classical music concert preferably Sibelius
Go to Isle of Harris and photograph the colours at sunset
Ride a scooter and enjoy the sound ales through empty streets
Have a fire in my garden with all the lights lit and enjoy the cheer joyful faces
Learn to play summertime on the piano
Hold an open air movie night in the garden of the MND movie ‘ I am breathing”
Make a collage of natural materials
Ride a horse and cart through the countryside
To identify the North Star and send a lantern up to it
Do a graffiti
Dye my hair an outrageous colour
Write a poem about my experiences
Have a weekend just driving and seeing where end up
To plant a tree in a desolate place .
Throw a pot
Attend a daylong meditation
Row a boat
Visit Bilbao
Make the biggest sandcastle ever and pin a hundred sparklers on OT and set it alight .
Spend a night huddled up in rugs in a tipi in front a fire
Read Middlemarch
This wish list has been curtailed somewhat to make realistic in relation to my MND but post yours !!!! Just for the rest of the year ….
I guess my new experiences will also be MND related as the first day in my wheelchair , the first day using a cough assist machine , the first day in a hospice … I hope I will have the strength to embrace these as first moments too. Sadly I think this might take place tomorrow night as I know my body is weaker than my spirit and a wheelchair will be needed : (
Living with MND 