Hope For Today :)

 

20050829-L1030358

31:12:2013

Panic Attack New Years Eve, Merde!
What is going on. MND, I am so over it. It is the most challenging time of my life. My reality today.
This past week on Morphine has not been at all pretty. And here I sit. The cusp of 2014.
Where do I go. What can I say but HELP! I need help. Do I sleep in my chair or where I want to be, in my bed. I have spent three nights in my chair. Is this how I want 2014 to start. Or do I Accept my FEAR and turn it into FAITH! Help!
And then I began breathing slowly and like a mantra I began reciting all my friends names. From all round the World. My anxiety reduced. God is a verb. I took action. I was not passive. My friends are my Higher Power tonight.

2:1:2014

I slept well in my chair last night. It was very cold. But I made it. As I lay back, as the day dawned, as the first rays of God’s Sun settled on the grape vine I planted a couple of years ago I observed Bunches of grapes hang, waiting to ripen. This year I’m hoping we beat the birds. I ate breakfast as usual. Vegemite on thin crisp toast with butter. An hour later I felt hungry and Muy Emily cooked mushrooms. Fifteen minutes as I began writing this piece my stomach exploded. All day it has been erupting. I am totally wiped as is my bum. I spent time in the sun and felt great. Then an eruption and a lost race to the bathroom. Merde! And just now I totally freaked out as I read the New York Times on my iPad. I glanced at my fingers. They are dying. No hair. Nails. Skin tight and shiny. My hands! My paranoia!
I was going to write something totally different today. My . . .

3:1:2014

Whew! MND patients really do need 24/7 care. Panic day. Carer gone, muy Emily in Wellie. Can’t pee. Bottle not reachable. Bugger. Challenging night. Dreams of Native Americans. Learning to walk in others shoes. Being available for and caring for others. Life Lessons. Need to pass it on.

I would like to write something positive today, rather than ‘oh poor me’ except that I am in an ‘ oh poor me’ space right now. Not eating has me tired to the point of lethargy. Lethargy adds to my sense of despair. Time to change diet to less solids. Puréed time. Soup time. Back to baby days. I need my strength. More protein liquids needed. Funny how life is a circle aka cycle. We start by depending on others for everything. We finish the same as we begin it seems to me. Makes me smile. Can’t be all bad can it? Not at all easy for others. I can see how certain, many? mothers would find it all too much. Frustration leads to anger. The child pays the price. Society pays a huge price.

Ah fuck! Oh Poo Me :) Shat my pants while in PWC! Waiting on carers.

Stormy and wild weather today. Beautiful looking out rear window. Sunlight competing with dark hammering rain and wild blustery wind gusts. My carer arrived, managed to get me on the Loo and found I had not pooped, mmmm! Paranoia?
After that experience I settled down. Cricket. Tennis. Food intake better than the last. I need my strength or I spiral down, depression kicks in and, ready to call it quits. Then the Sun comes out :)

Which brings me to the next step. When to go how to go. Muy Emily and I enjoyed an honest discussion on this today. We are in agreement. So . . . I did some web research. A toughie. It’s illegal in New Zealand. I am not committing suicide, I simply wish to die with dignity. I am buried alive in my own dying body. It’s that simple. I do not wish to be a vegetable kept alive by machines and nurses. And I do not need religion to tell me I am wrong. As a dear friend shared, it’s my choice.

5:1:2014
Sun day. Finally the Sun. What a day. Wrote to family and friends. Shared yesterday’s thoughts.
Now, mid afternoon my spirits lifted in relation to the morning experience. Sat in the sun and quietly meditated.

6:1:2014

Take me right now, please. A glorious summers day. I am done with MND and the Health ‘Care’ system. There is no Hospice in the Wairarapa who will take me. The DHB will not support me in a Wellington Hospice who understand and serve MND patients. I am over 65 so the NZ Systems cuts funding. There is no relief. My body is totally out of whack. Hardly a cloud in the sky. Birds singing. And I cannot relate. What do I write? Nothing of any consequence. Can’t find the energy. It’s gone. Can’t work on my photographs. Bugger.

7:1:2014

A blanket of grey cloud covers the hills and flats. It’s cold. I am bundled. Trying to write. Can’t do it. Beat.

Time to email Frank. A friend with MND. And did.
Another friend with MND died this week.
My oldest Australian friend is recovering from triple bypass.
Tough times. I continue to breath. Gratitude.
Life on Life’s Terms. The three C’s of Al-Anon FG’s . . . I did not cause it, I cannot control it, I cannot cure it!

“K here. Don’t know if you saw this on the Forum … but sorry to say, but Tom died “unexpectedly” in his sleep early Sunday morning. Unexpectedly, in that there had been no sudden turn for the worse, and even the hospice folks thought he was pretty stable at the moment. It was a such a sad surprise to wake up Sunday morning to find he’d gone; but really, it was the way he always hoped the end wold be. Suddenly, quickly, with no agonizing days-long dying process that would put everyone through the wringer.

But why I’m really writing is to find out how you’re doing. You’ve been struggling so much recently, and I’m wondering if things are settling down a little for you.

Sending tender and caring thoughts your way.

-K”

A Challenging Disease!

About kiwicafe

1955 . . . as a teenager in New Zealand, according to friends :) I talked incessantly of photography & philosophy, in my early twenties I hung out with photographers as I began my film editing career in Australia, I bought a variety of cameras, a faux snapper I guess, more interested in film editing, travel and back deck philosophy through which my curiosity took me from Sydney to New York & Venice Beach. For 45 years have I enjoyed working with some truly great creative directors, writers, art directors, film directors, photographers, producers et al . . . hopefully I learned a thing or two! I did win a bunch of awards and went from Editor of the Year in Australia to one of the top commercial film editors in America, not bad for a skinny kid from New Zealand. 2003 . . . newly divorced, I took the pledge, became 'one of many', an American Citizen & went Searching for Zane Grey's America. For two glorious years I filmed, photographed & blogged my way around the American West. 2006 . . . returned to Aotearoa NZ, restoring a small vineyard and continuing to film, photograph and write. I exhibited & sold some images, harvested a great vintage of both red & white, sold the vineyard, edited a movie or two & now, 2013, I have discovered a whole new journey for myself, via motor neurone disease. I continue to practice my love for film | fotography | philosophy as best I can, I am in a good place, there are no mistakes in life!
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9 Responses to Hope For Today :)

  1. Hi Richard, sending you lot lots of positive energy today…. All the best, Tania

  2. andersobob says:

    It is getting hharder to hang on for sure. The news aabout Tom hit me hard too.

  3. jpistorio says:

    Hope For Today :).

    Richard,

    Sending some positivity to you on the astral plane…..that’s one flight you’ll never miss!

    I support any course of action you decide to take-I think I would have acquieseced a long time ago if in the same straits. I admire your resolve and truthfulness in all the frank details. I only wish I could do something to help.

    Best,

    Joe
    (I reposted in my blog)

  4. Pingback: Hope For Today :) | Vlogonaut

  5. Julianward says:

    Hey my man thinking of you.

  6. Alison says:

    Richard, once more, your beautiful humour rises to the fore as you tell us of such trying times that we who still have good health can hardly imagine. *hat comes off, salute goes up*

    I do hope that what I write next will not offend you in anyway, as it is in no manner equal, but rather a parallel event.

    Four days ago, our beloved wee dog, Rosie, who has been battling kidney failure for the past few months, suddenly became very unwell. We could see that the end was coming and had already decided to let her go in Nature/God’s own way, in her own time, provided that she was in no pain.

    As the day and then the night progressed, she seemed to be quietly slipping away. She was not alone at any stage and we were prepared for a long night with her. But suddenly, at about 12.30am, she began to become very distressed. A sudden trip, then, from Martinborough to Carterton, where a most kind and understanding vet helped her to slide quickly to a pain-free place. What a blessing, for her and for us. And what a travesty that we, in full possession of our mental and spiritual faculties, cannot make that same decision for ourselves.

    With all blessings and prayers,

    Alison.

    • kiwicafe says:

      Certainly no offence taken :)
      My Kiri is 16 on shaky legs.
      I totally relate. Sometimes
      I feel she is waiting for my
      Passing so she can sit with
      My lover and keep her company.
      Thanx for the words XO

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