Tuesday 12 February
2:37:48 PM
I am restless, under the influence of my rampant motor neurons, cranky, combative and physically uncomfortable. What to do? Don’t just do nothing, sit there Dickey :)
Wednesday 13 February
8:46:09 AM
A southerly change, overcast, cold. Up and out of bed. After a night of dreams. Being asked to examine a Plant of some sort, Electrical I guess, maybe Nuclear. It was old and rusting and full of corrosion, everyone had to get out. Then the plant closed and, no power. People had to adjust, to seek alternate ways of doing life. An interesting dream.
( as I just re-read that I considered the dream, was it my Motor Neuron Disease, the corrosion of my neurons? mmm! )
Now I have showered, muy beautiful Emily showers me, it’s strange that I cannot do for my self all the things I have taken for granted. I guess. But to sit by myself, under a hot shower and relax, hot water running down and over my body. I stand holding the sturdy grab rails or sitting in my shower chair. Absolute bliss as the high pressured water splatters against my skin. Bloody luxury. Absolute bliss. Like standing beneath a waterfall on the Snake Trail in San Bernardino but hot, not cold :) And then comes muy Emily to scrub my back, arms and legs and soap my feet and hair and bum and balls. Aaah!
Then comes the drying with a nice textured towel, the rubbing of skin stimulates and wakes me. Blood surges to the surface and I feel both loved and alive. How I ever got by with showering myself, I will never know.
My Bipap sucks air out and pushes air in as I sit with my laptop. My fingers have lost their ability to dance over the keys and now they sort of stumble about as my arms rest on the sides of the chair. Bloody flies have kidnapped my computer and they irritate while walking, hovering, sitting. Harmless and annoying :)
And just now, I got stuck in the garden, bugger, a very heavy chair with totally inappropriate tires. Muy Emily is working at redesigning, planting and nurturing the rear garden, it looks awesome. I am somewhat jealous watching muy Emily work, not being able to work together, as we once did. This disease has taken much from our relationship but I am becoming more and more aware of what it has taken from muy Lover. The cost, not only in time but in our relationship. We sat down a couple of nights ago and muy Emily shared with me how she was experiencing loss. Like a death of a loved one. Death of the man she fell in love with. Her Superman! The grieving process is taking its toll. I truly relate as I am experiencing, finally, the passing of my life from one of activity to one of solitude and isolation as my body slowly takes me prisoner. I am not dead but I am finding it harder and harder to create and to express myself through my creativity. I can write, albeit slowly. I can work on my photographic images but can no longer hold the camera to capture new stories. As I spell check this my laptop feels like it burning my legs as it sits on my thighs.
Tomorrow, 14 February is Valentines Day, a day of renewed romance and love. What can I do, what can I plan, create or even celebrate. I guess that in my own way I can express my love for muy Emily but bloody hell, it’s hard. Bloody hard!
6:08:06 PM
Another day goes by. What have I accomplished? A great deal or nothing at all. Bits. Bits of this and bits of that. Enough for now, Ciao!
Valentines Day
14 February 2013
10:52:54 AM
This morning I fell. It’s time to pay attention to the fact that my legs don’t work the way I would wish they did. They have gone from long hikes, bike rides and running to not being able to support my weight. So here I am, sitting in my reclining chair. The television is on but muted. I don’t need another button to turn on an off with hands that are fast running out. A few moments ago I transferred from stationary chair to power chair and motored out to my studio and then back. Its an awesome summers day, no breeze, cool, clear blue sky and a few wispy clouds. As I sat gazing out over the natural beauty of the local hills I wondered at my life. What can’t I do vs what can I do. It’s an interesting dilemma. I experience gratitude, I practice an attitude of gratitude, I pray to the god of my understanding. Truth be told, am I ready to die? Or . . . Will I continue my down hill spiral where my body becomes a cloister for my spirit. Actually, that sounds pretty damned cool. My body as a Cloister. Better than a tomb! The TV shows images of the Pope delivering his last Mass. His body has become something less than. God’s representative here on Earth. That’s what they believe. I believe that I also, am god aka good’s representative here on earth. So, who’s god is better, theirs or mine? Or some one else’s? Doesn’t matter one iota. In my eyes all men are born equal in the sense of spirit. To me, that is where it starts and ends. Evil exists along side Good, in all of us. We make choices. Cause and Effect. Good vs Evil. I have tried to do good, have not always succeeded but have I done evil? I have no idea. Certainly not in any deliberate form. I have never set out to harm anyone. In fact I would say I have only harmed myself. Choices. And yet, when I step back and look honestly at my choices I have not done so badly. Others, ex-wives maybe, will view it the way their lives are colored. I have no power over that and, in fact, their view of me is actually none of my business. Very freeing. And here I sit, outside on the street, a truck slows with screeching brakes, it’s Thursday, garbage removal day. A metaphor as I write my thoughts, garbage removal day indeed, writing is getting garbage out and clearing the way for new ideas. Taking my own personal inventory, not others’. It is healthy, like a fasting, cleansing of the body. I realize in sharing that, my writing since childhood has been a healthy cleansing of my soul. It may not always make sense but the mere fact of being willing to sit and scribble, sit and type or today, to sit and tap with fingers without power. My typing is a challenge that I can see, today, as time running out. What’s next? Eye Gaze typing or simply, meditation. Acceptance and surrender are key. I cannot fight, I will not fight, there is no point. My body has said “NO!” I need to accept reality today. I have Motor Neuron Disease, pure and simple. Fuck! But what ever, no matter how negative I may sound today, to talk, write, share, is healing. It’s like sending a message to the Universe. Help!
12:19:27 PM
Just spent half an hour goofing off on Face Book, I love it, much preferred to Television :) and so, where was I? Sitting here with sore ribs and stiff neck as the result of my fall. I share these issues on PatientsLikeMe and the ALS FaceBook site, very freeing to share the journey. A problem shared is a problem halved, ancient wisdom. Love it.
So, my fingers are curled, especially my right hand which is where the very first symptoms of my ‘disease’ appeared. Just feeling my ribs again, it would appear that I fell this morning, with my arm beneath me and my ribs were the bones that broke, pardon the pun, my fall. My neck possibly tensed as a reaction. I certainly feel jittery. And emotionally vulnerable. I have heard some with MND share they wish they had Cancer so they would have Hope of a Cure. Don’t know, my reality is that it is what it is. We all have different journeys, we all live different lives, that I love. That I can share what I share as I experience my journey. Certainly not boring. Ciao!
3:39:57 PM
Afternoon cicadas sing to me, it is so beautiful, sun burns down on our cedar decking and the aroma of raw timber is release. I love what we have created. The front garden is a paradise of indigenous plant, the rear garden is fruit trees garden beds full of vegetable, herbs and flowers. Plums, Walnut, Cherry, Lemon, Grapefruit, Blackcurrant, Feijoas and Fig. Not a bad mix when thrown in with Olive trees and Kowhai, Totara and more. Amazing really what can be created in a small space. Both muy Emily and Me have garden Studios. Creative and productive living. This so makes up for my negative words today. But hey, my writing is my inner life being expressed outward, simple really. And so, for now, that is enough, time to post or delete :) Ciao.
I discovered your writing a few weeks ago after typing the word “ventilator” in a New Zealand-limited Google search. What I was looking for was information. What I found was a connection to the words in your writing and the sense of a kindred spirit, of discovering a soul not unlike my own. Words that voice beliefs, emotions, experiences, and a sense of wonder at the world despite circumstance, that I share – and am only just beginning my own journey to voicing. My age is different, my diagnosis is different, but of the loss in the nature of neuromuscular disease, that is what I share, on a very personal level, as I read your writing. The reflection that examines the sometimes grief, sometimes anger, frustrations, gratitude, wonder, appreciation, acceptance and self-contentment born of a body slowly fading while the mind watches, tallies, compares and takes note. As it by day, month, year, quietly records the time and nature of each loss of function and progression closer to that ever-present destination that time now converges on in that indistinct horizon we call our future. Sorry. :) I’ve been trying to engage myself with actively writing lately, rather than only contemplating what I’d like to write, and it seems to be easier to just get carried away. Reading your blog has encouraged my desire to express myself through writing, something which has eluded me, though I’ve searched for it all summer. So, I thank you for that. I’m only just beginning my written journey, and I find a great sense of self-identification that I feel in your writing, through the sense of closeness I feel geographically (as a New Zealander living in Palmerston North), and shared experience (Limb Girdle Muscular Dystrophy, a degenerative muscle wasting disease, diagnosed age 2, rapid progression, range of movement ever-limited by worsening contractures in all meaningful joints, and physical ability ever-disappearing through loss of strength… and, finally, ten years of increasing ventilation support, due to ever weakening respiratory muscles – worse in the last three years, I’m 22 now – classed as “severe respiratory failure type 2″, and the true barrel of the shot gun I face down, which provides the perspective fuelling my desperation to enjoy today, create footprints, achieve change and connect with others). It has also inspired and imbued me with a sense of freedom and expression in writing as a creative outlet. Because that’s part of what I want to do. I want to live without regret and enjoy what makes me happy today. I want to create; I want to leave behind a “myriad of impressions” as Virginia Woolf saw life, ones that reflect who I am, my self, my mind “on an ordinary day”, so that others may know me and the journey I have experienced and am experiencing… So thank you for the part you play in making writing and everything possible with each post, as a living model of a life as I want to live it, to create, achieve, reflect and connect. And also for allowing me to feel connected to another person who shares my losses and my reasons to grieve. After all, a problem shared is a problem halved, right? ;)
“Let us record the atoms as they fall upon the mind in the order in which they fall, let us trace the pattern, however disconnected and incoherent in appearance, which each sight or incident scores upon the consciousness. Let us not take it for granted that life exists more fully in what is commonly thought big than in what is commonly thought small.” – Virginia Woolf, Modern Fiction
What can I say Joyce but thank you, beautiful words, you are on your journey, “write like you talk” is an old writers adage. Do you have a Blog as yet?