Friday 15 February 2013
10:37:02 AM
The angry buzz of a electric sander attacks me from my neighbors house.
5:59:12 PM
All is quiet but for the sound of my breathing.
Sitting in my Studio a few hours ago, my iPhone chirped, normally I do not answer the phone unless it’s muy Emily. Twas my Brother, my eldest. After my Father, my most troubling male relationship, not his fault, mine. I wanted him to fill the hole left by my Dad. We have phoned, written, faced off. I have confronted, argued, guilted and more. And now he phones. He hopes I am better. MND dude, no cause, no cure. My frustration rises to the surface. My Brother has a trigger temper, I have no boundaries. This is always going to lead to mayhem. Bugger, I so wish for a sibling I can enjoy an intelligent, civilized conversation with. My Brother experienced a stroke a few years ago whilst living in Wales. My Sister and Me, we helped him back to New Zealand. He chose Napier. The town we moved to after Wellington. I spent 14 years in Napier before giving New Zealand the big heave ho. Sometimes I could kill him, with words :) I need to let go. I can be hard work, for myself!
My relationship with my siblings is rocky at best.
“how important is it?”
Not very :)
Sunday 17
12:33:37 PM
A glorious start to the day with clear blue sky. Now an overcast, matte grey sky. Not all bad with the air as warm as it is. Computer clean out time, restoring back up disk, saving images. House keeping. Yesterday muy Emily helped me set up my desk now that I have handed over my desk top computer and hard drives to Wellington film maker Costa Botes. In front of me, a whole new view, my MacBookPro, hard drives, a printer, speakers and photographs of my children, mother and me. A new chapter in my life. Onward! Ever onward.
4:47:40 PM
New Hazelnut trees, BlackCurrent trees, muy Emily is awesome. Sad news today. Emily was at her school swimming competition when news came that a student was killed while on her way to school. Killed at a rail crossing, in a car, driven by her boyfriend. She is dead, he in critical condition in hospital. I see it so often, cars, drivers, not stopping at stop signs. Bloody tragic and so now, muy Emily plants fruit trees.
Monday 18 February
11:43:17 AM
A new week. Overcast. Like me. Today I am mourning. My reality is that today, my right hand does not work. Fuck! My hand can operate my Power Wheel Chair but it can’t work the keyboard of my computer. Right hand and my right foot. Pretty much useless. I experience a profound sadness, frustration, anger maybe. I am reduced to typing with one hand. This is one fucked up disease. I feel helpless, even while not hopeless.
Earlier I was working on my photography which I love. I can no longer edit my film but I was hopeful that I could continue to tap out my thoughts and color correct my select library of images. It makes me angry. My anger is, I guess, my fighting spirit. I accept my condition but it does not mean I have to give up or give in. If I were to do that I would go and hug the local goods train at the local crossing as it carries fallen logs to Wellington. Not ready for that though. I gulp air as I type and my fingers curl like a hook out to snare a fish. Merde! My breathing comes in gulps as I try to focus my mind on what I wish to share. I pause because my breathing needs to catch up to my brain. A healthy mind, a sick body. I guess that sums it up. I am fine, it’s my body that’s fucked!
6:48:48 PM
Writing about my hands and my pissoffedness brought the sun out and some life back to my pinkies. Warmth is my God. In the beginning was the Sun, followed closely by . . . The word!
Ciao!
Friday 22 February
12:06:38 PM
Bloody hell, where did the week go? Seven days later and here I sit.
From hot, crystal clear days to overcast and cold. A relief or a challenge? The hot air was extremely difficult, breathing became harder, my comfort level jumped all over the bloody page. And yet . . . I managed to work on photography, dick around on FB, wasting time and energy in places I need not go.
Right here right now, I am alive and tapping as against typing. Typing for me is writing, where a thought, an idea has a life of it’s own and I simply go along for the ride. Tapping on the other hand, pardon the pun, is where I struggle to get my fingers to land where I want them to land. No great threads come from this but I am being productive. Practice, practice, practice . . . I am not simply accepting that my neurons have take control, actually . . . the opposite is true, they have given up control. The are running wild. Erupting throughout my muscles and twitching my body away. Twitch bloody Twitch! And then my fingers cramp as I suck in air. Life is strange don’t you think . . . Not!
Some, or many, say life is unfair. Unfair? Compared to what? Life is Life. That I can breath is proof of that. So I can’t run, hike, cycle, photography, film or make muy lover smile, but there is much I can do, and do do!
My Blog is my voice, my Photography my eyes, my Garden my Soul. Muy Lover, my mate, soul mate.
That we own a home, that I have muy Emily to share with, that I can eat, drink and smile, that is fair. My imagination could run riot if I were to describe what I believe to be ‘unfair’!
It’s all a question of degree, I guess. I have my memories, thousands and thousands of inbuilt, stored images and experiences from which to draw. Of hiking mountain trails of California, the American West, of walking the streets of New York, Paris, Singapore, Sydney, Hong Kong and Wellington. Of books I have read, movies I have seen, Art Galleries I have explored. Of coast lines I have sailed and rivers I have swum. Roads I have driven. Memories to share, to inspire, to feast on in my moments of quiet solitude. A rich banquet indeed. And then there are the relationships, marriages, children, family, friends, the turmoil of human interaction. The struggle to remain positive, the failure, the mistakes, the victories, and on and on life goes. The trees in our garden. The colors of Nature. Grapes crushed to wine. When I step back as I am, I can see that life has been very much a life well lived. I have enjoyed, despaired, inspired, explored my self.
Not a question of fair or unfair at all. Life is simply Life.
All the minds and hearts that have gone before and those that will follow, all add to the history of humanity. This is the palette from which I draw. God is in the details . . .
”I am here. I am there. I am everywhere. Always and all at once. So says our God. I am within you. I am around you. I am above and below and beside you. Now and forever. So says our God. There is no place that you can be that I cannot. There is no time that you can inhabit that I will not share. I will be with you. I will watch over you. I will uphold you and enfold you and carry you and lay you gently down. So says our God. Do not fear. Anything. Ever. Do not despair. Do not deny. There is no need. For I am. And always will be. For you. For all of you. So says our God.”
- The Rt. Rev. Steven Charleston, Choctaw
I guess that says what I cannot. That I have struggled all my life, searching the aisles of Supermarkets all over the Planet, looking for a belief system and guess what, “take what you like and leave the rest” resonates. I do not need to join a club to believe what I believe. My Cathedral is a Forest of Native Totara Trees. 500 years old, not 500 yards along the street from where I live. Before I was diagnosed with MND I would run down to the Grove and walk , slowly, beneath the towering trunks and branches of these Gods of the Forest, ‘Tane Mahuta’. I love the concept of being able to place my arms around a tree or at least, as far as I can reach, or to simply lie against the trunk and close my eyes. Looking up, the light dances between the leaves. The sky plays hide and seek as the wind moves the leaves. Rays of sun light shaft down to the carpet of leaves on which I stand, supported by the ancients. The God of my understanding. My first memory of this as a child was age 18. As I began full time employment. I walked from our house, down a winding path beneath the trees towards the city streets below. On rare occasions, I would sit and reflect. Waves of peace washed over me, I felt as though a light of understanding would peirce my shell. Years later, now living in Sydney, as I sat in Moore Park, practicing meditation on the edge of a lake, I sensed an energy flowing toward and through me. Peace is Profound. Peace is Healing.
Today, I sit in the garden, surrounded by trees. Bathed in light and reflective within my self. This is my religious practice. I do not always succeed. But when I accept that all is well in my world, I am at peace and my negative energy evaporates. As it is right now. Gratitude! Life is a mystery. It begins the moment a spirit enters and ends the day the spirit dies. At times I feel as thoughI have ben reborn many times. I feel at times like an ancient traveller. Maybe I am, maybe we all are. It’s not for me to know, it’s up to me to live and fully experience the Journey. And, as I am today, pass it forward. Who knows who will read these words.
Who indeed! Ciao!
“Do not be awe struck by other people and try to copy them. Nobody can be
you as efficiently as you can.” – Norman Vincent Peale
A friend of mine gave me back something I thought I was losing when she asked me why I didn’t use the on-screen keyboard to just click, since I confessed to being ‘lazy’ with replies and comments to everything. I’d experienced a slow and increasing shut out of my participation in the world beyond my computer via email, the world of my peers through Facebook, etc., and a huge increase in difficulty in my ability to complete effective study – all because of the loss my respiratory strength, and general range of movement and strength in my hands and arms means that it’s a lot of hard and energy-draining work and effort to get everything just so in order that I could type. Bit slow getting quick with familiarity – just like a new phone – but I can do so much again, so easily with just a click and a fraction of the effort! Do try it. :) You can find it in the Ease of Access centre in the Control Panel on Windows (not sure about the Mac equivalent, sorry!). MD isn’t MND, but I hope it helps give you back something like it has for me. :)
Richard, Reading your account of your relationship with your brother shakes us all to the DNA of our bones-The story of Romulus and Remus writ large. I thought my brother was the only reactionary, judgmental, hair trigger tempered sibling out there, but I guess the sentiment is universal. I’d be interested to see his take……As usual, your insight into the human condition is at once mystifying and banal. Banal in the best Everyman sense, I say! If you are up to a little Skype time, I would welcome the chance to speak to you directly for a few minutes. In Austin, TX today, have a meeting or two, and then the Jungster’s reunite. The band I was in during the late 80′s and 90′s is re-uniting here for a jam and good times. Going out now to buy sets of these cool sonic filters that filter out impulsive volume, preserving what’s left of my hearing. What?