I wanted to say too about Wayne Dyer. He was recently diagnosed with leukaemia (not sure if he mentions it in the movie I posted last night). Anyway, he’s very open about it and continues doing what he does best, lecturing and writing best selling books.
Saturday 22 June
The interview with Jonnie appeared in last Thursdays Irish Mirror was fairly accurate (got my age wrong – I’m a year less!) and well written. For those who didn’t read it find the link here. I said to Laura as she helped me with my lunch today “I dread being known as “the Lady with MND”” and she replied “you are known for your strength in living with it “.
We did an interview yesterday with the Irish Independent newspaper. The journalist sent me some questions which I really enjoyed answering as nobody has asked those types of questions before. “What do you miss?”or “what was life like before onset?” Such frank questions nobody dares to ask for fear of offending me. But I feel good about being able to answer them now.
I’ll let you know when it’s published.
Jonnie and I watched a movie. It’s based on a book that Wayne Dyer has written called “The Shift” (Shapeshiftingemma!). If you have time to spare I’d highly recommend watching it. We got a lot out of it and I think Wayne Dyer (who stars in it) is really a gorgeous man.
For those who haven’t seen yet there’s an article about us in todays daily mirror. Apart from the headline screaming terminal illness! It’s well written.
I’m sitting in a darkened room as I write this on one of the hottest and loveliest days this year.
The light is my enemy as I struggle to write words on my eye-gaze computer. I’m in constant battle with the sun. My friend Clare, who makes hauntingly beautiful films, is aware of the technical problems that hinder her profession. So she’s kindly helping me find a solution for the light sensitivity problem and has been in touch with the manufacturers regarding a hood for the screen. Annemarie (kind neighbour) got me an umbrella you use for blocking out strong sun on a baby’s buggy. All this is very helpful but, I’m afraid, it’s not enough. This computer basically needs a good servicing. Unfortunately that is not an option as I wouldn’t get a replacement. It’s is my life-line and link to my family, friends and to all of you. Without it I wouldn’t survive.
Saturday June 8
Since I wrote the above Jonnie has been in touch with the C.R.C. (Central Remedial Clinic) who provided the eye-gaze computer. We’re booked in for a “remote” session from Dublin to update the software on Tuesday. I am really hoping this update will make a difference even though I still won’t be able to use it outside in the sun.
I had oysters and lobster al fresco on Thursday evening, with sparkling white to accompany! Jonnie had salmon and it was all thanks to Barre and Joyce who gave me a Fishy Fishy restaurant voucher for my birthday.
The back garden/courtyard has been a place I’ve been really enjoying recently. Watching a poppy burst into red magnificence with a deep purple velvety interior made my day today. Hearing the flutter of a tiny wing as birds reach into a feeder is always a delight. Gazing up into seamless blue is fast becoming one of my favourite things to do. (That rhymes!) But there’s really no accounting for the beauty that can be found in one’s own back garden. Mary Oliver ‘s poetry comes to mind:
“Hello, sun in my face. Hello you who made the morning and spread it over the fields… Watch, now, how I start the day in happiness, in kindness.”
Keeping me sane these days is an audio book by Wayne Dyer (a spiritual thinker from the U.S.A.) that Jonnie kindly got me. It’s his adaptation of Lao Tzu’s Tao Te Ching, an ancient Chinese text. I remember falling in love with a French painter when I was twenty five and he produced a translation in French of this work. I ploughed my way through it with eager intensity, marvelling at the truths I was able to decipher with leaving cert French. Tao, pronounced ‘dao,’ literally means ‘way’ and the text is all about the natural order of how life is. It presumes a higher life energy that directs every living thing:
“Nature does not hurry, yet everything is accomplished.”
I find this really helpful especially as things go so slow in my world! It helps me to be at peace with my condition. I had an epiphany moment recently when I realised that an inner life needs to be worked at. I have acted upon this and subsequently am feeling much better. My sister-in-law, Gill, writes a newsletter and in the most recent one she speaks about ‘practising feeling love ‘. That is taking time to cultivate loving thoughts not only benefits us but those around us too. In fact, Lao Tzu would probably say that the surrounding plants and animals benefit from this as well!
Finally, a trip to the beach was painful recently. Seeing other mums drying their kids little bodies or handing them a bag of crisps when they get out of the freezing Irish water. These are things I miss doing. Otherwise I’m just sitting in silence with my thoughts. I think about writing my blog or songs that the kids might enjoy to put on a play list that I am making for them on Youtube. All creative thoughts to compensate for what I can’t physically do. Later I emailed Mum about my distress and she replied shortly after: “it means a lot to the kids to have their Mummy there with them.” Of course I realised as the penny dropped! Suddenly I felt selfish and unable to see outside my own pain. Of course they’re happier to see me there with them. I can see it in the deep blue of Rowan’s eyes and in Kitty’s little hugs as she sizes up to me. My kids love me despite my physical appearance and that feels really wonderful!
Finally I think Kitty needs more female company around her to play with. There are far more boys than girls living around here. I know this because recently when Rowan threw a ball at her she muttered “oh, my nuts! “