Thoughts on . . . Dying?

20051029-L1040578

10:01:2014

Thoughts on dying.

. . . it continues
Day in
Day out
Trepidation
I sleep in my chair
I wake in my chair
I spend the day in my chair
Full of gas, needing help
With every move I would like
To make. MND Is diabolical
I am in no pain
I have not lost a limb
Nature is far from me as
I sit.
Quietly. Holding, meditating
On to serenity
I enjoy a constant dialogue
With the sun of god
That has been a gift
A new day dawns and I smile
As the Sun rises
The Navaho taught me
To face east in the morning
It’s hard to share my thoughts
Actually they make me . . . Sick
F.E.A.R. I guess
I repeat the Serenity Prayer
Grace to accept the things
I cannot change
Over and Over. Let go, Let god.
Tell me god, your will, not mine
I look to muy lover with sadness
not easy for muy Emily.
My daughter Emma is with me
It’s tough for her. She is a
Treasure along with her sister
And my memories are so clear
Love wins over all.
Faith replaces fear.
I am at mile 26 of my final marathon
385 yards to go
A procession of friends, music
Sharing, food, wine & laughter
Breathing becoming harder by
The minute. I am ready.
An Attitude of Gratitude.
I have enjoyed a dialogue
With the god of my understanding
I am clear in my choice
I am feeling positive and serene
I look forward to going
Home
Home to the universe
Filled with light and love
I am enjoying
Dialogue with muy Lover
Dialogue with muy Daughter
Sister Jennifer
Brother john
Thank you both
Friends, Family visiting
Supported by carers

I am about to free my spirit from my body
My spirit is strong
My body is dying MND cannot be turned
I am not nor want to be
A vegetable

I am returning as A heron
Amen.

Posted in kiwicafe | 14 Comments

Friends :)

Ah dickie boy

What a wonderful child of gd you are. Yes you have that friggin disease but it hasn’t silenced you and the burn within is still there. I cant begin to understand, feel, deal with the myriad complications of Your illness shit I have a hard enough time understanding the tricks, the mystical twists of alcoholism so what the hell do i know about neurology?

You were are and will forever be my good friend and i recognise you today as i did then more than twenty years ago that bond, connection, identity that connects us. Shame on your gerald if he cannot appreciate that he has the privilege of that connection by virtue of birth. You and i did it by selection.

I say when on the bedpan think of all those you want to piss on or say piss off too and do it!
I say continue until the fire goes out and dear brother of mine i can smell the embers, the warmth,feel the heat and hear, yes i hear you speaking and unfortunately still occasionally yelling  to which i say….go get em’ cowboy on a yellow stallion.

Love and affection,

David

Brandon commented on Sun of God . . .
Zane Grey’s America needs to be seen by those who would appreciate it.
I can only imagine what that journey must have been like, how thrilling it must have been, how the languishing video, photos, writing, must be begging…
I wish I could help in some way but I am afraid that all I offer is the desire to do so.
Hello Richard.

What a great surprise to hear from you via our dear friend, David
Wilzig, after all these years. I will be forever grateful for all your
many kindnesses to us at Women in Recovery.

Life goes on for all of us, doesn’t it? And what a wonderful life it
is? We have been blessed.

I am not at the house in Venice anymore. We leased it out to another
group to run for us. The work of helping women continues, which is all
that is important. Frankly, I was burned out. Now I live in Dana Point
where I am still involved, but at a much slower pace!  I do spiritual
care counselling groups for a local rehab, which is rewarding. Have
also found some great meetings down here.

So, all is well.

Richard, I hope we will stay in touch.

I send you much love and God’s peace and blessings.
Ada

Hello Dickie, I wanted to say hi and for you to know I am thinking of you, yes you are right we will all have to face dying at some time in our lives.  We try not to think about it until it is staring us in the face.  I know what you must be going through, I love so much how you get such joy in being surrounded by your beautiful home and garden I get such a good sense of where you live and the joy of your beautiful home and the roses are beautiful. You are on my mind Dickie and I want you to know that even though I am not close by to see you, I think of you often and I am following your journey. Life goes on here at the farm we are harvesting this years crop, the weather  has been very strange.  We had a mini tornado blow through  here the other day with huge hail storms, it lasted about 20 mins the roof of the house nearly blew off.   lots of love and big hugs my Dickie.  Love Stella

Dear Dickie,
 
I just read your post from the 15th….so honest, so real.  I want to write you and let you know what I think of you, how you have brought joy into my life. 
 
I met you in the rooms some 10 years ago…I had a crush on you…your spirit, your openness, your willingness to be present and the joy that you took from doing so much of what you love….Kiri, your yellow Land Rover “PaKaaea” that would bust your gut when you rode in it….music, art, photography, architecture, travel, reading, writing, cooking, your garden, your home, I love that you love the color yellow.  Simple and pure…nothing wild, nothing crazy…I love your sense of style…your overhauls, your beret, your gnomeness, …. running through the trails in Malibu like a bunny rabbit.  I loved your strong coffee, chook and fresh cut flowers from your garden on your kitchen table.  I loved your groovy high tech airstream, the courage it took for you to go out on the road to find Zane Grey, with just you and Kiri…on a discovery of roots, a life mission, exploring your boyhood fantasy.  I sat in awe at how you put your life in a shipping container, went back to New Zealand and brought back to life a withering vineyard…fought off those bloody birds and literally bottled your dream of a lifetime, to own a vineyard. 
 
I love your open heart, your drive to be current, your life to be meaningful.  I love that you have such a loving higher power, live in the moment and trust in God’s will.  I love your wicked sense of humor, your naughty words, your gentle thoughts.  I love that you re-created your life in New Zealand and found love with Emily, I am so happy you found Emily.  I am grateful that I was able to spend time with you, to learn these things about you.  You will never die, none of us ever do.  You have made an impression on so many.
 
I still have the yellow ring you gave me with the blue stones and I wear it often.  I have the note you wrote me while you were on the road when you asked me to marry you.  All of these things are tucked away in a special box and a special place in my heart. 
 
I understand that you may be ready to leave when you have days like you described in your blog.  I can’t imagine how difficult life is for you.   One day at a time Dickie, One Day at a Time.  When I think of you, I always smile…..and I always will….:)
 
Much Love, Shash
 
Victoria Harvey Beautiful writing Richard Clark. You took me with my parents who were visiting to Berowra Waters for my 21st birthday in 1980 I will never forget it was such a special treat. I remember Mario’s so well it was a fantastic restaurant and in those days it was the place to be. You gave me a copy of Larousse Gastronomique for my engagement present and when we met up in New York in 1987 you took Adele and I to The Oyster Bar in Grand Central. Great memories. A connoisseur of fine things. Thank you .
Mike Miller commented on AOTEAROA . . .

Richard, I didn’t know of the journey you have been on. I am so sorry to hear that. your writing is eloquent, insightful and enlightening. beside everything else you give to the planet, it is a wonderful gift you give to your kids. My thoughts are with you my friend.
Thanks Richard Clark: you post the most interesting reflections. Did Stef tell you, or maybe he was too shy, that he graduated cum laude from the Hagley Writers institute this year and was awarded second prize over all for his writing portfolio, in which you feature as your alter ego: Good Richard. Thinking of you often. xx
A fine couple of brothers, musicians, calling themselves “Boards of Canada” seems to help me so much.
I gather that the inclusion of Morphine means something rather grim? My grandmother died many years ago and I remember in the end they had her on this contraption that would feed drips of it to her to help her with pain and things. Funnily enough, I found out that I had an uncle with a habit of dipping his finger into the container and helping himself to a bit of the effects of that stuff. Now that I think about it, they would deliver her jugs of the stuff, about a gallon each, and it looked like liquid detergent or bleach for the laundry.
I am constantly on the lookout on the internet for more videos from you, pictures of your trek in the American Southwest, and last night I had a dream which was surely based upon those beautiful pictures you’ve posted of the old shack with bullet holes here and there. It looked like a house in the middle of the Grand Canyon or something to me. It reminded me of where Lassiter and Jane might have lived if they built themselves something to live in.
My wife has happily agreed to allow me (and actually accompany me!) on a journey which I will proudly call “Richard’s America” and although I’m sure to miss a lot I hope to be able to one day tell some children about the man I’m coming to know a little more with each of your blog posts, and how Zane Grey inspired you who, in turn, have inspired the hell out of me.
I hope it’s not offensive for me to say this, but damn it all that you have to deal with MND. I cuss that damned disease every time I think about you.
More bravery, ticked out one letter at a time (I wondered how or if you were typing). We have some friends here who just celebrated 33 yrs of sobriety and are big supporters of AA. They go to meetings to support the new members and to remind them that they are not alone. All you say here is emblematic of them: non-judgmental, open, curious, loving life and lots of laughter. What can I say, Richard? I’m constantly blown away by your wisdom, clarity and humility. Truly a great example of dignity under fire. I feel fortunate (I’ve got a problem with “blessed” too) to have the chance to share some of your musings. Hang tough.
Joe Postorio

Dear Dickie Boy,

What with all the posturing, screaming, bullshitting, honest dialogue, philosophising, incantations, religious discussions, events and the like you and I have shared one would think that we had covered this area before…after all we have exposed our true truths to one another for many a year but this, this discussion my dear sweet Dickie Boy appears no longer to be an intellectual exercise it’s Dickie Boy’s life, not Dickie Boy versus the world as there is no versus here, there can be no “argument”, the facts are as they are, you feel the way you do and there is no one in this world that can fully , truly ,collate and collect the life of Dickie Boy and assess his ending. That is yours alone. truly your own path and looking in the rear view mirror , which all of us at a certain age do, you do know best. Perhaps that is all I can tell you, that may well be the only “advice”…

“How’s your omelette” the waitress in Boulder, Nev just asked and I responded ” just fine”(although it wasn’t and I really didn’t want to dialogue with her about the quality of a diner omelet..

So why interrupt an important missive with details of a 29 second dialogue because, dear dickie….I am in Venice, at your home, hungry and you whipped up an omelet with fresh eggs, herbs from your garden, veggies and some fantastic olive oil…I can savor that and now push the plate away. You owe me 8.99 for this shitty omelet that I am leaving with the crappy coffee and tax its a little over ten dollars.

I speed-read the laws and comments that you forwarded , however,I know all of that stuff. It’s stuff, I represented Dr.s who removed a patient after flat brain wave and they were sued for criminal acts. The statutes don’t apply here as you and I are talking about you and I love you, I don’t want you to go away and as I write that I realise that as with our loved friends Tony and Stan , important friends don’t ever really depart…they remain in one’s lexicon, one’s memory and one’s heart.

I wish I had the answer. I had it when I was younger- take no life! Real simple. I was angry at my grandfather for hanging himself instead of going to Auschwitz with his family; after all, I knew better, the law said take no life. I was angry with a girlfriend who underwent an abortion as I had a simple rule- take no life. What a fool I was then as I cannot imagine having a relationship with her or raising her child.

So here I am back to my original thought that you and I must have discussed this issue over the years and why the hell don’t I have an answer? Hell not only do I not have an answer, I don’t even have a question!

I do love you,
david
Richard,
although i’ve hardly met you in the flesh i feel like i’ve got to know you through reading your blog and talking with emily, and I’ve grown to love and admire you.
I hope you’re fully aware of just how good you’ve been for emily and how wonderful it was when you got together to see that she’d finally found a real partner in life and love.
I understand and support any and all decisions which you and she make together.
With much love
Rebecca

Dear Dickie Boy

You asked so you deserve an answer.

My health? Recurrent pneumonias, incessant coughing, sleep apnea and the ever-present fear that my chronic cancer has returned.

My wealth? Ok but I don’t earn what I did when truly, fully active and so I now have concerns.

My happiness? After reading your email I arranged for 9 Days in the Yucatan to fly-fish for tarpon and bonefish. Why not, it makes me happy. MJ makes me happy, my kids( in the main ) make me happy, you make me happy as I can feel the warmth, the concern and the love in your words.

I refuse to focus on the negative albeit very real and trust that you can remember, recall, bring to mind, see , hear and recollect the laughs, the pints, the miles, the amazing times we’ve shared…not many could be so fortunate and I certainly never expected such a brotherly relationship when in Kilbern,Sheffield or NYC growing up. I recall at 15, that when I learned the truth about my heritage I had a breakdown, saw a psychiatrist who said that I suffered a “poverty of social relationships”. Surprise? Shipped off to school at 4 1/2, transferred to US at 13 with no explanation: hey you’re a Wlzig, not a Wilson and you’re a Jew not an Anglican;ask no questions as “we’ve all been through too much of the war to speak to you about the “problems” you might have”. So perhaps you can appreciate the impotance of lil Dickie Boy and our bond to me.

Love

David

 

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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!

Posted in kiwicafe | 9 Comments

I LOVE NEW YORK!

F1010108

I wrote this some years ago . . .

Hi Rudy, I was in your town for a few hours work last week and decided to make the best of the moment. Here are a few of my experiences and observations.

9:00am
…flew in from National, can’t use the ‘R’ word, sorry, caught a taxi to the Post Building on E42nd Street. Worked 4 hours. Post Production . . .

2:30pm
…walked to grand ole Grand Central in time for the hourly laser show, played to Vivaldi’s Four Seasons. I was close to tears, actually a bit beyond. What a spectacular way to be introduced to the renovated Terminal. I have always, since ’87, thought it to be the centre of my Universe. With the renovation it comes closer. Down to the Oyster Bar which is usually my first port of call in the big apple. 2 1/2 dozen oysters, a glass of sauvignon blanc, French not the far superior but unavailable New Zealand Cloudy Bay, cup of espresso, slice of baked cheese cake and another portion of the laser show from the mezzanine. Vivaldi worked better.

4:00pm
…fast hiked across town in the falling light and stood in awe at the changed times of Times Square. What an improvement. The last time I stood here, last year, I raced to the aid of a spread eagled pedestrian as the locals stood by and watched. He was African American. He was hit by a Jeep and appeared close to death. I knelt and held his head, talking to him, yelling for pedestrians to call for help. New York reminds me a little of Australia I guess, love the country hate the people!

5:00pm
…walked one minute per block to Macy’s and quite possibly appeared childlike as I gazed in wonder at the Miracle on 34th Street. Then back to Times Square for a photo op and then a fast hailed cab to McDougall Street for “THE” best Tirasamu on the face of the planet at the oldest Cafe in New York, Cafe Dante. The iced cappuccino and tirasamu reminded me of the many, many Sundays I sat with the same whilst I lived on Hudson Street. Grabbed a handful of their post cards and quick walked up 5th Avenue for a short sharp shop at Paul Smith’s.

7:30pm
…time for a Taxi to La Guardia, caught one at Union Square “which way do you want to go’ said an accent that I couldn’t place, “your’e the driver, the easiest and quickest please.” we were through mid town tunnel and headed in the right direction when I was asked, “where do we go from here?” I gave it a beat for the question to sink in.
“your’e the driver, that’s your job isn’t it?”
“I’m here on holiday for two weeks.”
” you’ve got be . . . expletive . . . kidding” was my reply. Needless to say we missed the plane and he missed out on a tip by heading back toward New York as my client and I sat in horror. I managed to get him turned in the right direction but we still missed the next and last flight. I didn’t quite trust myself booking a hotel room in New York and catching an early morning flight. My client is single, very attractive and great company. Enough said. Could we catch the Metro liner? No it’s already left and there is only Amtrak at 11:30pm which would get us in at 4:00am or there about. I had to start work the next day at 8:00am! We hopped another taxi and headed to Manhattan, at the very least we were headed somewhere. My client called United “anything at all to BWI, National, Dulles?” By this time we were close to the MidTown tunnel with me trying to comprehend the bearded turbaned sikh driver. He couldn’t quite get a handle on my precise New Zealand accent and I was certainly lost with his. “there’s a flight from JFK to Dulles at 10:20pm”.

9:30pm
I managed to convince the driver that we needed to head back to JFK and I managed to persuade the Policeman on duty at the toll booth of our predicament by leaning across my very attractive client and yelling my story as she booked the tickets. We headed toward the Terminal as driver #2. asked me to call the “noomba’s”,
“what?’ I yelled over the engine noise,
“noomba’s, give me the noomba’s”.
The penny dropped,
“oh you mean the numbers to the Terminal?”
“Yes, the noomba’s.”
“7″.

10:12pm
…we ran through the deserted terminal to a far off desk, signed for the tickets to a tiny Turbo Prop Shuttle. It was a challenging commuter flight but we made it. My client survived my thoughts and we continued to work together for quite some time.

I LOVE NEW YORK!

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Is that you?

20051119-L1050180

20:12:2013

Friday. First dose of Morphine. What can I say? Both the Doctor and Chemist missed the written details which come with pills. Do not crush or halve! This can be lethal. No wonder I was out of it for much of today. I was drugged. Oops! A small dose. Not fatal. A full pill works over time. Time release. Tomorrow we will see. It did help my breathing though. Zoned out in my chair though.

21:12:2013

A full morphine pill today. Slow release, fingers crossed. It’s a tiny dose to trick my brain. As if it needs tricking! Sitting outside I took myself down memory lane from age 13 to age 44. It’s amazing to me how my memory has sharpened, the details come back so clear. A bonus to balance being buried in a degenerating body. Bloody constipation :) however, managed to be quite productive with my photography.

22:12:2012

Summer Solstice the longest day down here in Aotearoa. Sun beaming down on us. My dear daughters Alice’s birthday? Born Sydney, Australia 1975 with Down’s Syndrome. The Doctors at Royal North Shore suggested we put her in a home and get on with our lives. Arseholes!
Alice lives with her Mother and Sister. Her Mother has raised Alice lovingly, beautifully. Her sister Emma is also loving and loyal. As for me, her proud Dad, I still twinge at having left Australia. I returned often and never stopped loving my daughters. I am not, by nature, a family man.

23:12:2013

“. . . I came—though the child of entirely irreligious (Jewish) parents—to a deep religiousness, which, however, reached an abrupt end at the age of twelve. Through the reading of popular scientific books I soon reached the conviction that much in the stories of the Bible could not be true. The consequence was a positively fanatic orgy of freethinking coupled with the impression that youth is intentionally being deceived by the state through lies; it was a crushing impression. Mistrust of every kind of authority grew out of this experience, a skeptical attitude toward the convictions that were alive in any specific social environment—an attitude that has never again left me, even though, later on, it has been tempered by a better insight into the causal connections. It is quite clear to me that the religious paradise of youth, which was thus lost, was a first attempt to free myself from the chains of the ‘merely personal,’ from an existence dominated by wishes, hopes, and primitive feelings. Out yonder there was this huge world, which exists independently of us human beings and which stands before us like a great, eternal riddle, at least partially accessible to our inspection and thinking. The contemplation of this world beckoned as a liberation, and I soon noticed that many a man whom I had learned to esteem and to admire had found inner freedom and security in its pursuit. The mental grasp of this extra-personal world within the frame of our capabilities presented itself to my mind, half consciously, half unconsciously, as a supreme goal. Similarly motivated men of the present and of the past, as well as the insights they had achieved, were the friends who could not be lost. The road to this paradise was not as comfortable and alluring as the road to the religious paradise; but it has shown itself reliable, and I have never regretted having chosen it.” – Albert Einstein

24:12:2013

Morphine has a side effect that has me in its grip. Constipation! It’s a killer. Literally! For three days. Merde! Not in the spirit of Xmas :)

25:12:2013

Happy Xmas :)
A glorious day here in the South Wairarapa. Relaxing. Doing nothing apart from sitting on the Loo!
Took about four trips. But the relief is worth the discomfort. Do not now need a pessary. No more details :) now for Bollinger :) and seasons festivities! Gratitude.

Muy dearest Emily :)
What can I say but that I love you.
my dream was that you would
Be loved by me and me by you,
together, would be sharing our love and life
And now, I am dependent on you. Totally vulnerable.
I guess that is a form of love :)
Not what I had in mind.
However :) we are here, together.
Our reality. I can but hold you.
I can but touch and look at you, fondly
I can’t verbalise but I can tap my thoughts.
You fill my mind. You fill my days.
More so, You fill my heart.
A very humbling lesson.
I honor your love for me.
It’s hard to show but, at least I can put it In words.
You provide the love I have yearned for, all my life
and here we are, together. As one . . .
Thank you muy love.
Thank you for your love.
I offer you mine. Unconditionally.
Thank you.
your Superman.
XXXXXXXXXX
OOOOOOOO

27:12:2013

3:30am . . . Panic Attack!

Weird but sitting here in my PWC I feel okay. My Stomach is gurgling.
Darkness outside. All quiet inside. I was in bed but lost the plot.
Muy Emily and Me both sitting in the lounge. Both on iPads :)
BBC on the Telly. An Art Doco. Jonathon Yeo. Portrait Painter.
In days gone by a panic attack would get me out of bed and I would write it out of me. It worked for years. Today, to simply get out of bed, into my PWC is a real challenge. I cannot move my body my self. Muy Emily is no weightlifter. Changing my breathing device. Another challenge. My stomach is under attack. Constipation from Morphine followed by diarrhoea A race to the bathroom. Getting me onto the Loo! All this at 3:30 in the early hours! MND! Shit! I am so over it. I am totally powerless. Totally dependent on others. Challenging indeed and not just for me.
The irony is however, that I feel just fine. As though there is nothing wrong with me. I sit on the Loo and smile.
But then again, feelings aren’t facts. Are they?

BBC interview with Richard Holloway ex Bishop of Edinburgh. Caledonian. An excellent listening and learning experience. A man after my own heart. Doubt is indeed freeing. Questioning. Simply not accepting the status quo. Letting go and Letting God does not mean I simply give up. God is a Verb. I need to take responsibility and . . . Action. And That, includes asking for help. Yuck :)

Evening news, as usual, full of death and destruction. Once more Beirut is targeted. Power corrupts!

28:12:2013 = 1, a new beginning?

Slept in my wheel chair all night. ‘Twas surprisingly comfortable. Morphine is changing my status. But not in a pleasant manner. This morning I feel the call of the Universe, of God. I feel drugged out. Not the way I wish to live. Our stupid, religiously driven laws dictate I cannot take ownership of my life. The Universe is my Higher Power aka God. The God of my understanding. The Sun of God flows through me. Religions around the World appear to me as Man Made power structures.
‘ My God is Better than Your God! ‘
In my Life, God is a Mystery. That is the Beauty of Life. The Unknowable. Doubt even. Life on Life’s Terms. It is what it is I like to say. It appears that we fight this to our own lost ness. I close my eyes, focus on my breath and experience peace. Thank God for Meditation.

“Those who view the prospect of life without abundant drive as unutterably dull and boring should examine the life of members of Alcoholics Anonymous who have truly adopted the A.A. program. They will see people who have been stopped — and who, therefore, do not have to go anywhere — but people who are learning, for the first time in their lives, to live. They are neither dull nor wishy-washy. Quite the contrary, they are alive and interested in the realities about them. They see things in the large,are tolerant, open-minded, not close-minded bulling ahead. They are receptive to the wonders in the world about them, including the presence of a Deity who makes all this possible. They are the ones who are really living. The attainment of such a way of life is no mean accomplishment.”

Dr. Harry Tiebout

I have practiced the 12 Steps & 12 Traditions daily for over 23 Years via Al-Anon Family Groups.

“Since medieval times, the mystical tradition of Kabbalah was restricted to qualified men over forty—because it was believed that only the most mature and pious could grasp its complexity and profound, life-changing implications. More recently, Kabbalah nearly disappeared—as most of its practitioners perished in the Holocaust. In the national bestseller God Is a Verb, this powerful spiritual tradition, after centuries of secrecy and near-extinction, is explained clearly by one of its most prominent teachers.

Who are we? Where did we come from? Where are we going? How do we get there? These questions have fuelled Kabbalists for nearly a millennium. Rabbi David A. Cooper is the first to bring this obscure and difficult tradition to a mainstream audience in a way that gently leads us to the heart of the subject, showing us how to transform profound teachings into a meaningful personal experience—and appreciate fully this great mystical process we know as God.”

- ‘God is a Verb’ by Rabbi David Cooper

As I have shared before, my change in life, attitude, came when I listened to my Self. Age 40. Now, age 70 I am in a deep, deep place of vulnerability. Fear. I am powerless. I am wholly dependent on ‘others’. For me, this a game changer. I am wholehearted. My body is dying. I write with one finger. I can barely breath. Eating has become a chore. I am taking morphine to trick my brain. I cannot dress, wash, shit, travel, photograph or film. Why Morphine? Is this for my wellbeing or for others? Some days, like today, I step across the divide. Enough. I feel the pull. Is the Universe calling me home? God? Is that you? What do you want, wish of me? No answers. Action. Keep doing what and when I can. Embrace the challenge. Surrender. Don’t fight. Simply Do. Write. Edit my Photography. Love my situation. Love muy Emily. Love my Daughters. My friends, my carers. Love Life. Wow . . . Love MND! Therein lies the Journey. I was going to say , therein lies the ‘Answer’ but realize, accept, there is no answer. Simply Do! Amen.

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Sacred Spaces – revised . . .

19:12:2013

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“In my own situation, when I was between the ages of about eleven and fifteen, I was crazy about American Indians. My family bought me The Complete Works of Parkman, reports of the Bureau of Ethnology, and all sorts of other books on the subject. I had a very nice little library, with beautiful, bronze, Indian heads that were bookends, and Navajo rugs, and so on. Then the house burned down. It was a terrible crisis in our family. My grandmother was killed. All of my things were gone.

“I now realize that the sacred space I created for myself, the room in which I do my writing, is really a reconstruction—a reactivation, if you will—of my boy-hood space. When I go in there to write, I’m surround-ed by books that have helped me to find my way, and I recall moments of reading certain works that were particularly insightful. When I sit down to do the writing, I pay close attention to little ritual details—where the notepads and pencils are placed, that sort of thing—so that everything is exactly as I remember it having been before. It’s all a sort of ‘set-up’ that releases me. And since that space is associated with a certain kind of performance, it evokes that performance again. But the performance is play.

“Work begins when you don’t like what you’re doing. And if your life isn’t play, or if you are engaged in play and having no fun, well, quit! The spirit of the sacred space is Śiva dancing. All responsibilities are cast off. There are various ways of doing this casting off. and it doesn’t matter how it happens. The rest is play.”

Joseph Campbell in A Joseph Campbell Companion: Reflections on the Art of Living.”

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I totally relate, discovering Joseph Campbell in New York, collecting reading and learning from his remarkable insights. A large eclectic library of books sit in my garden studio, paying attention to the space, paying attention to what I buy, what I read. How I interpret. It is my retreat. My sanctuary. My ‘sacred space’. My life.

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Then the question arises. What is sacred space?

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For 40 years I spun. Out of control. Faced by a dilemma at age 40. Change or Die. My life changed. By discovering the sacred within my self. The sacred that I believed I had consigned to the depths of a metaphoric mythological Scottish Castle. Deep within the dungeons of solid stone walls, surrounded by a moat,  protected by a draw bridge, keeping me in and others out. I was dying from within, out of control. Lost in my world. Work became my drug of choice, earning, spending, food, wine, things. I meditated on this for three years then discovered New York and my life took a radical turn. For the better by far. I discovered Mythology. It fed my hunger. Filled my emptiness. But not wholeheartedly.

Sacred space has been a curious, challenging part of my life since early childhood. Raised in a ‘Christian’ environment, not relating to religion as we were taught. Hypocrisy? I lived in an alcoholic controlled family environment. I  often became nauseous, claustrophobic in church and had to leave, walk outside to breath. The sermons irritated me with their sanctimonious platitudes. I attended at my Mother’s behest. My Father not present. Men appeared to me as bullies and I cringed my life away. Creating my own, controlled environment, my early film studios were my escape. Creative Space.

On the contrary I enjoyed Maori school friends, visited sacred Maori places, worked in the Maori Land Court. I felt a connection. I played  Cowboys and Indians. I was always an Indian. My art at school was Native Americans on horseback. Today I have a sacred prayer rug laid out on my desk, hand woven by Navahjo women from ancient Navajho sheep. Bought from Indian Traders on Navajo Lands. Along with many memorable memories, spending time on sacred lands of and with indigenous peoples. From The East Coast of New Zealand to the American West.

My collection of Joseph Campbell languishes in my studio but will find a new explorer. I am sure.

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My first sacred space was reading under the blankets in bed. Romantic Zane Grey Westerns! Then my running, the nurturing of nature. On a hill, in Napier I sat, looking out over the town centre toward the Pacific Ocean where it entered Hawke’s Bay. It was my first remembered experience of enlightenment, filling me with a sense of wonder and mystery as a teenager. I reconnected with that sense of being through my cross country running. Runners high? Euphoria? It fascinated but also confused me. Who was I? In my first and second marriages my sacred space was in sailing boats. An escape to the Pacific Ocean, off Sydney and Los Angeles. Standing at the helm, searching the horizon. Clean salt air, a sense of self, surfing the ocean swells. Adventure. Freedom. Space.

New York’s TriBeCa, I could climb a circular staircase to a separate room on the roof of my loft. Space for writing looking out at the New York skyline. In Venice Beach enjoying an ocean going yacht for my sanity. A classic design. A place of retreat and with which to explore the Channel Islands of Southern California.  I treated that yacht as  my Cathedral. It was inspiring, serene, with dreams of sailing back to my homeland. Then came a kiwi inspired shearing shed style studio behind my home in Venice. A space in which to edit, write and retreat. I loved exploring, hiking, alone and with friends. The Mountains and Trails of Southern California. The spirit of the trails inspired me. Solitude. In Nature. The Santa Monica Mountains became my sacred outdoor space. The native Indian trails of Point Mugu were mysterious and challenging. The Los Angeles Marathon was another sacred journey. One started at age 18 in New Zealand, unfinished, and finally completed at age 53. Friends ran, cycled and cheered along side me in support, I could not, would not complete it alone.

In America my last sacred space was a glistening Airstream trailer. For two years it followed my heart and soul into the American West. Death Valley to Big Sur, Salt Lake to Denver, Colorado. Zion National Monument, Wilderness areas of the Grande Canyon, Kanab and the Coral Pink Sand Desert, Lee’s Ferry, Moab to Ridgeway, Tombstone to Jemez Springs, New Mexico and finally, returning to Venice Beach, California.

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Searching for my self . . . Navajho guided my adventures into the deserted  Betatakin cliff dwellings of the Paiute. Paiute awoke in me, reminding me, of the power in healing the sacred self. Mormons showed me the power of community, of parenting, of commitment. Never have I experienced such loved and happy children. I filmed, photographed, hiked and slept in sacred places. Ancient glyphs of the Navajho. More recent, 1885 carvings by Mormon Settlers. Mormon and the Navajho traded together. Zane Grey wrote of this. I ran across Monument Valley. Parts of Death Valley. I explored the deserted places of Zane Grey’s Westerns. I sat, meditating on the edge of the Grande Canyon at Toroweap Overlook as the sun rose and set. I hiked the trails and peaks high above Ridgway, Ouray and Telluride, Colorado. I sat observing the majesty of the Rockies  at 13900′. I enjoyed my experiences with Paiute, Navajho, White River Apache, Hopi, et al. Conversations covering indigenous cultures, healing, faith, even rough riding. Past and present. I was surprised and intrigued by their openness and curiosity. On reflection, always reflecting, I wish I had gone deeper. And longer! Far longer! Travelling with my dog Kiri was memorable. She was my trusty loyal companion. I miss the West. And, I miss Westerners. They inspired, entertained, encouraged me. I felt accepted in America like nowhere else, before or since. However . . . I ran into and accepted my limitations. I had enough funds to continue for the rest of my life. My homeland called me. I longed for a partner with whom to share my journey. Romantic ideas and ideals pulled me  toward New Zealand even though I had become “one of many” – an American Citizen. A badge of honor. I found the challenge of ‘aloneness’ daunting. Fearful at times. Hiking Spencer’s Trail high above the Colorado River at Lees Ferry, I hit my limit and froze. I experienced white faced paralysing fear. I recorded my fear on camera. It was a mysterious experience. Did I dessert my sacred self or was it simply hitting my limit. It could have been my sacredness protecting me. It was after all a sheer 3000′ climb up a cliff face. A fear of heights? Possibly!

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Before returning to Aotearoa, while hiking the Colorado Rockies, I bought, over the internet and sight/site unseen, a Roger Walker designed tree house with its very own Jungian Tower in which I spent countless hours writing and reflecting. Now, ensconced in the South Wairarapa I have created a garden  space for my self in which to create and reflect. To me the concept of a Tower, a Studio, is a place to retreat forward, to close off access to others, pulling up the ladder, creating a safe sacred space. Today, I smile as my Power Wheel Chair appears to be my sacred space. Ironic. I spend all my daylight hours in this sacred space. There are no mistakes in life! I love ‘doubting’ Thomas’s “god is within us and all around us”. The sacred never leaves me it is me that leaves me. Amen.

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The Guest

Two who had loved in each other’s eyes met strangeness.

Wonder at loss. Distance. It seemed as if

(we pondered alike) a third party, a guest,

who knew us both, and lived, or seemed to live,

in our relation (shadow), grew as we grew,

suffered what gave us pain and breathed our breath

or ardor, had grown between us like a thorn.

An apartness. Or lifted (perhaps) subtly and secretly

away, as a feather in a light wind, a thistle

disengaged… In our eyes, knowledge of loss.

Wonder at absence. Vacancy. Terror at peace,

at acceptance—easy adjustment to unspeakable emptiness.

—Laurence Lieberman.       ( does he refer to MND! )

I am learning that my true Sacred space is my Heart, all else is EGO aka Edging God Out!

Each morning I am drawn to the rising sun, the Sun of God. I enjoy lying still, like a child, beneath the cosy covers of my bed. In dialogue with the Universe. Asking that my heart be open. To give and receive. My bedroom window is a cross like frame which I see as a compass guiding me forward. A full moon filled that space last night. I love it. Sacred Space is Within us and all Around us. It has simply taken time to become aware, accept, embrace and explore.

The Mystery of Life revealed through reflection on the sacred spaces explored in my Life Long Journey. And, it continues. Gratitude.

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Sacred Space . . .

 

12:12:2013

“In my own situation, when I was between the ages of about eleven and fifteen, I was crazy about American Indians. My family bought me The Complete Works of Parkman, reports of the Bureau of Ethnology, and all sorts of other books on the subject. I had a very nice little library, with beautiful, bronze, Indian heads that were bookends, and Navajo rugs, and so on. Then the house burned down. It was a terrible crisis in our family. My grandmother was killed. All of my things were gone.

“I now realize that the sacred space I created for myself, the room in which I do my writing, is really a reconstruction—a reactivation, if you will—of my boy-hood space. When I go in there to write, I’m surround-ed by books that have helped me to find my way, and I recall moments of reading certain works that were particularly insightful. When I sit down to do the writing, I pay close attention to little ritual details—where the notepads and pencils are placed, that sort of thing—so that everything is exactly as I remember it having been before. It’s all a sort of ‘set-up’ that releases me. And since that space is associated with a certain kind of performance, it evokes that performance again. But the performance is play.

“Work begins when you don’t like what you’re doing. And if your life isn’t play, or if you are engaged in play and having no fun, well, quit! The spirit of the sacred space is Śiva dancing. All responsibilities are cast off. There are various ways of doing this casting off. and it doesn’t matter how it happens. The rest is play.”

Joseph Campbell in A Joseph Campbell Companion: Reflections on the Art of Living.”

Sacred space has been an important part of my life since early childhood. I enjoyed Maori school friends, visited sacred Maori places, played Cowboys and Indians, I was always an Indian. My art at school was Indians on horse back. Now I have a Navajho prayer rug hand woven from ancient Navajho sheep. And memories of spending time on sacred lands of and with indigenous peoples. My large collection of Joseph Campbell languishes but will find a new explorer.
My first sacred space was reading under the blankets in bed. Westerns! Then my running. Then the nurturing of nature. In my first and second marriage it was yachts. New York’s TriBeCa had a separate room on the roof of my loft for writing. In Venice Beach I again had a yacht. A glorious place of retreat and with which to explore the Islands of Southern California. I then created a shearing shed like studio in which to edit, write and dream. Lastly in America my sacred space was an airstream trailer. For two years it followed my adventures in the American West. Searching for my self. Navajho guided my adventures into Betatakin. I filmed, photographed, hiked and slept in sacred places. I enjoyed dialogue with Paiute, Navajho, White River Apache, Pueblo, et al. On reflection, always reflecting, I wish I had gone deeper. Longer!

Before returning to Aotearoa, while hiking the Colorado Rockies, I bought, over the internet and sight/site unseen, a Roger Walker designed tree house with my very own Jungian Tower in which I spent countless hours writing and dreaming. Now in the South Wairarapa I have created a garden studio space for my self in which to create. To me the concept of a Tower, a place to go, to close off access to others, is creating sacred space. Today, I smile as my Power Wheel Chair appears to be my sacred space. Ironic. I spend all daylight hours in my sacred space. There are no mistakes in life! I love ‘doubting’ Thomas’s “god is within us and all around us”. The sacred never leaves me it is me that leaves me. Amen.

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