kiwicafe's BLOG

I am not allowed to get angry in my own home?

Emily has come home after meeting with my Occupational Therapist. The OT is the keeper of the gate for any help and support that may be available from the Government. Local and/or Federal. Ministry of Health.

From the very first time she set foot in our home the OT struck me the wrong way. I found her arrogant and her manner demeaning. Every meeting since has reinforced that experience and the further we go the less I wish to have anything to do with her.

And so when I say that I am not allowed to get angry in my own home there is a sense that I need to store my emotions, put them on a shelf and be a nice, model, passive New Zealander. I was surprised that Emily said there was no need for me to get emotional. Merde! I am 69 years of age and should be in the prime of my film making, creative life. They say, or so I have heard, that a person needs to tap into their anger to get to the core of their creative spirit. Well, here I am. In touch with frustration at not being allowed to be emotional or angry. In my own home? And they call this health. This is so unhealthy as to be totally sick. I am not asking for the world. I am simply wanting a simple answer as to what and how the system will support me. If it won’t support me then I have options. I can take the drastic route and end my life right here, right now. Or I can spend what I have to get what I need and then fall on the system, become a drain on the system.

This possibly sounds angry and emotional. Guess what? It is. And I have every right to be angry and emotional. We are looking for help with re-building the bathroom and we are looking for help and support in getting me to a point of mobility where I can have a minimal decrease in my daily activities. Of course I could simply not sell my Land Rover and drive it to the best of my ability, come what may. I could put my half of our house up for sale and simply pay for all this myself.

If I was a Finance Company or a Dairy Farm or, and it hurts to say it, someone on the Benefit. I could then get a Government bail out. I get no Pension in New Zealand, I cannot even get a Gold Card. I have not stopped working since I was 13 and I have continued to work in New Zealand since I returned. I have restored a Vineyard, shot Films for Aratoi Art & History Museum, Films for local Iwi. I have photographed, filmed and written about this Land. I had a Radio Show in Masterton on Access Radio for 5 years. Much of it self funded! I have edited 48 Hour Films for up and coming Film Makers. I have edited a couple of NZ Feature Films at greatly reduced editing rates. I have attended and contributed to Film Conferences in Auckland and Wellington and was instrumental in trying to get a Film Group started in the Wairarapa. I am basically saying all this to show that I have not been idle. I have 3 Blogs. One for my Film. Pakeha & Pearl, a film I shot over 2 years in the American West and which is languishing in the editing stages. Another Blog for my Photography and one for my Writing. My photography appears to have a life of it’s own and has been accepted as part of the Wai Art Review at Aratoi and I have exhibited in Carterton. I have been documenting the East Coast of the North Island with a particular emphasis on the South Wairarapa, this is intended as a future Documentary. This is a full time occupation. But it appears that my OT or, it appears, The Ministry of Health, are not interested in asking me what I do. I need to prove to them what I do. They have never asked. It’s all been about me having to fit within their box.

Yes I am pissed off and angry.

For over 40 years I have promoted New Zealand. My Kiwi Film Company from 1973 to 1987 in Sydney and then my 19 years of Film Editing in the United States, both very visible in supporting this Country overseas. I was highly sought after and highly awarded. Since 1998 I have used Richard Clark’s KiwiCafe.Com as my business vehicle to edit and do all the work that has provided and continues to provide an income. It has not been easy. In each of the past 3 months I have enjoyed an income from my photography and from some wine sales. There is no reason why any of this should not continue. There is no reason why I cannot continue to earn an income. All my energies have been geared toward this aspect of my life since I returned to the land of my birth in January 2006. Last year I applied for and was successful in being part of the National Census and I was at the top of my game with that. I loved driving around the Wairarapa interacting with far flung residents on the South Coast. I have been and continue to be a contributor in the Community. As a Board Member of the Community Center. I have also spoken at Speakers Corner in Featherston and have addressed 2 Lions Club meetings in Masterton and Greytown. I have been the Wellington Area Delegate for Al-Anon Family Groups in New Zealand. Last year I was involved in the National Conference in Auckland. This year, since my diagnosis, I have had to pull back, this was to be a 3 year commitment. As Area Delegate I need to drive from Masterton to the Kapiti Coast and everywhere in between. I am involved in the MND Association of New Zealand and am taking part, as a competitor in the 10K division of the Wellington Marathon. I have been successful in asking for a WheelChair supplier in Sponsoring me. I take part in the International ‘PatientsLikeMe’ web site contributing thoughts and support to those with ALS/MND around the World.

Am I being unreasonable?

Quite possibly I am. But please, do not be mistaken, I am not asking for a free ride. I am asset rich, in a very small sense of the word, but cash poor. I have no debt today. And so I am not a negative financial drain on anyone. I will continue to speak up and speak out and I will continue to be in touch with my emotions and my anger where need be. It may not appear appropriate but then I could say that our Occupational Therapist and the Health Care System is not being reasonable.

Tomorrow I have to be measured by my Occupational Therapist. For what? I need to prove that I am fully employed. For what? Do they even know I don’t get a Pension in New Zealand. That I file my taxes, that I file my GST every month? I doubt it.

I did not ask to get Motor Neuron Disease. I am not at all ready to die. But I have to say that tonight it is an option and the energy all this bureaucratic bullshit and procrastination is taking, it’s exacts a huge emotional and physical toll on me. I had to work hard tonight to simply breath and calm myself down after Emily talked about the wheel chair and bathroom process. Also, this is not at all easy for muy lovely partner Emily. We did not sign up for this. Emily did not sign up for this. Emily is my sole carer today and without her I have no idea as to what I would do. I love Emily deeply and it hurts me to see her having to play the Game.

This is not a pretty disease. No known cause and no known cure. There is not a lot I can do but do what I can. For the past 3 weeks I have been able to carve out 6 hour days and begin building a Photographic Web Site.

I just received an email from a professional photographer in Australia, I had asked for feedback on my new site . .  .

“Good photography is an intuitive thing, like most creative endeavours.

people who do it very well  & consistently are very rare. Your work is of a very

high level & you have a very good eye for detail. Eg;  the photographs of

Paris  a few years ago you produced were exceptional. I would find it

difficult to offer an opinion on each and every one because they represent

your personal insight, if that is what you requested.??.  An artist is judged

on their body of work and yours is something to be proud of.”

It is exhausting but I am doing it and the feedback I am getting is very positive. I have created an Online Store via FotoMoto so I can sell my images. I am considering how and if I can sell my Pakeha & Pearl project to Maori TV or Overseas. I have spent over US$150.000.00 to date shooting and starting the editing process. I get no income for this but I consider it to be full time work. Even if I can’t prove it. And the end product would have been offered to American Television and distributed as a Book and Film Project. I have registered 3 ideas with Online Publishers, Blurb and LuLu and my writing has progressed at a healthy pace. Basically I am saying, that , as I have always been, I am self sufficient and as always, very, very productive and forward looking.

And now, now I get to let it go, trust in the process of life and support Emily to the very best of my ability. I can only hope the ‘System’ will reciprocate. It’s not easy asking for help. It’s not a pretty way to end my life. I had always stated I was going to live to 100. OOPS! :)

A wheelchair takes 2 months to get built and delivered but the Health Board cannot assess me until July. I could be dead by the time they get their act together. Emily got the local Council to approve our bathroom plans in a week. Amazing. Now we wait on the District Health Board. Bugger!

Actually we wait upon the Bureaucats at the Ministry of Pain and Suffering :)

Now I have got my first headache for years, Bugger again!

Quote -

“If you want to understand health, you have to understand what it means to be sick, at phenomic and molecular levels, so you can correct it in a holistic and effective way.”

May 18th

No time recorded

The time has arrived for me to utilize a fully operational motorized wheel chair. One that allows me to continue with my life as I have enjoyed it, one that allows and supports my creative endeavors of film, photography and writing. I need to enjoy the time I have left to explore my situation and share it with others. I have done my homework and researched chairs from New Zealand, America, Sweden and Australia. There are many truly fine products available but until I sat down in one and had a benchmark by which to test others, then I would be truly lost. I have written to a variety of companies. One in particular was on the ball and I had information fed to me within hours of asking. A1 Wheelchairs in Palmerston North contacted me and made themselves fully available. We set a time and they drove over to my home today and what an eye opener. Brent, the deliverer, and owner of the company, drove the chair from his van right into our kitchen. Not a small feat. Emily and I live in a small 1920’s cottage. Not designed for mobility living. The garden is a veritable nature reserve. The chair fitted through the side gate that I was going to and will have changed, made larger. Anyhow we got in the house and then I got to play.

May 21

1:14:09pm

Bugger, it’s cold today, though the sun is shining and there is warmth if sitting directly in it’s rays but I am not, I am cold and sitting inside beside a roaring fire. My hands don’t work but I can use my middle digits to tap away at the keyboard. Bugger, there is the cat, outside the doot looking at me with eyes that say “let me in, let me in” and I will Amigo.

But back to the chair. Amazing. I thought my days of outdoor enjoyment had gone. Hiking, running, country walking, driving, exploring, photographing and filming. I see people on the streets where we live, I see people in the city. In mobility scooters and some in motorized wheelchairs. Some small, some large. This particular chair exploded all my doubts and fears that I would be a prisoner of convention. This is a very sophisticated and therefore expensive chair. A basic $20 Grand. Ouch! I tried selling my Land Rover this week but as yet, no go. I relisted it again today, shaved a grand of the price, it has to go, no choice.

Motorized Frontier V6 4X4 Motorized Wheelchair.

Brent, from A1 Wheelchairs came over and we test drove the chair, it did everything I need a motorized chair to do. It is rugged without being over the top. I need to be able to use it, both indoors and out, with my film, photography and writing. The trhree areas of my life that keep me acive and sane. It appears that this is able to do all of that. It runs very well on gravel, grass and the curbing where we live. It is able to climb steps we have around the house. It has great safety features such as the control system, an iPod/Phone attachment, lights, turn signals, horn, etc. Obviously we will be governed by the costs of these extras. All the aspects I need. It is able to rise 12” and tilt to 50 degrees. The distance it can travel is 35K and can cruise up to 10K. The company are prepared to sponsor me in the Wellington Marathon on 24^th June next with a suitable wheelchair that they will provide. I will be able to film and photograph this event as a fund raiser and as an awareness builder for the MND Ass of NZ. There is already a web site built for this. I have volunteers prepared to push and support me, including the Wellington Representative, Moira.

It will access the local roads and side strips. It will access local Library and other Community areas. It will climb local trails and country roads. As for funding, I am prepared to pay the bulk of the cost but need help from the local District Health Board, DHB. Or the Ministry of Health. We are also applying to the Lotteries Board, who fund such stuff. This may not be easy but it is my choice. My lifestyle for the time I have left is paramount. The freedom to continue my film/photography/writing is critical to my wellbeing. I am not going to pre-empt a fight with bureaucracy but I know from recent dealings that they prefer to work within an accepted box.

The chair easily gets me from inside the house to my work desk in my studio, it easily works around the garden, it manages the gravel of our drive and the curb outside our house. It manages the grass strips alongside Underhill Road and other areas we regularly travel.

I guess I am going to need all the help I can to cut through the red tape of Government and the local Occupational Therapist’s attitude. We have been proactive with all my needs and are not prepared to accept procrastination or obfuscation. I need help and time will show us what works and what doesn’t. Time to stop and rest my fingers. I tried cooking some Lamb Chops, bugger they are tough and chewy. Mmmmm. Time out Dickie :)

My Environment

Sunday 13 May

12:39:?

A blank sheet of paper and then I remembered, Mother’s Day.

Is that a subject I wish to visit? Probably not. I asked muy lovely Emily if her children had phoned, “No, we don’t do that, it’s commercial”. I guess that says it all. Subject laid to rest. And so, what to write?

John Steinbeck and my reading ‘Travels with Charley’? The weather? My eye sight? My new web presence?

I love Steinbeck’s writing. Descriptive, funny, engrossing. And very, very good. The weather is simply that! My eyes have gone to another plane, new glasses recently purchased and already they are not strong enough, bugger! Web presence? Yes! I am quite proud of this aspect of my life today. I now have sites for my film | photography | writing. This has been a long time coming. I own a few Domain names, all hosted by the same provider, whom I have been with since 1998! Wow! I love longevity and loyalty, it works both ways. Network Solutions, take a bow :)

www.pakehaandpearl.com

www.richardclarkskiwicafe.com

www.kiwicafe.com

With my condition changing day by day I have to focus my energy, strength and finances accordingly. I have wanted to have a clear path to the aspects of my life which I love, film | filosophy | fotography. In that order.

I tried a portal I thought would work but didn’t. It could have but the service people weren’t on my page. That was flavors.me. A great idea and gave me one front door to the Internet. It looked great, stylish in fact. I tried so hard. That was to be my kiwicafe.com, which then would have linked to my 3 loves  of film, photography and writing. And other places as well. I gave it my best shot. It didn’t work. I could try once more but now I have all three working as they are . . . Leave it well alone. Viewbook is my latest best friend, Jim helped me set my photographic page and linked it to my Domain so easily it makes me realize how easy and how necessary it is, to simply ask for what I need. The H.E.L.P.  word :)

So here I am. Sunday. Overcast. Sun shining through. What to do today. Breakfast over. Coffee being made. Dog inside, Cat possibly asleep in my Garage Studio. Do we go for a drive later, possibly. I can write, work on my photography, stumble with my Zane Grey film and simply be alive.  Bugger, my neck is going, time for me to move seating.

1:09:57pm

Ah, much better, in a lounge chair with computer on lap and coffee at hand, chocolate biscuits coming :)

To muy lover I said “have you ever seen a thumbnail like that?” “nope, never seen one like that before”.

A strange shape has evolved, sort of like 3 sides to a box with a gentle curve. Within the nail is a thread of blue that looks somewhat like a bruise or a blood vessel or a splinter which, over the past month has moved from the quick and now threatens to disappear out the top. The little things in life, which amuse and fill time.

So what do I write about today? Friends?

David E. In Venice Beach has a Gallery opening at the end of the month.

David W. In LA has a court case starting. Dan H. has joined with Marie and has a writing partnership happening. Dan M. at the beach in Venice is writing his memoirs. Paul K. in New York City is writing new music for an Oliver Stone movie while he edits television commercials. John C. in Greytown has new pages going up on his photographic site. Julian W. in Wellington just put up a new Portfolio of photography, also using my friends at Viewbook. His work is very special, street photography going back 40 years. John M. in LA has retired but continues his creative path. Natalija N. still works on the stage as does Bruce C. in San Francisco, directing Shakespeare.  Erik A. in Venice Beach is celebrating Kate’s birthday today and continues his relationship with the english painter Hockney. And more. Some I have lost track of and need to skype. Others have fallen by the wayside, yet more are living their lives, productive, challenged, much like myself. It’s awesome. The great social networking of Twitter, FaceBook and Linkedin. I utilize them all. Oh and don’t forget SKYPE. Awesome the age I live in. Who would have thought I would come to live by the sites I love. I am a true Gemini, ruled by Mercury, the great communicator.

I just had a thought but it’s gone.

It’s funny, “careful what you ask for” ‘cause you may just get it :)

Over the past few years I have been thinking. I have done enough. My time is at an end. Little did I know that my guardian angels have a wicked sense of humor and so here I am . . . stopped!

No, not dead, simply stopped. All the distractions that kept me from what I am doing right now, have gone, evaporated. My computers are a means to an end. They are the vehicles of my journey. No destination in sight. A sense of gratitude that I am focussed. Sure I wonder at times. Wouldn’t it be great if I could write a novel. Make more films, take more photographs. But that is not for me today. I love sharing my story, my journey. My triumphs even. Muy lovely Emily has become my primary caregiver. Not what we had on our agenda 3 years ago when we first met and fell in love. Today? Today, we are still in love and long may it continue. Last night I had a wet shave for the first time in weeks or, has it been months? Electric shavers simply don’t cut the mustard. A clean, close removal of facial hair is a delightful process followed by a movie and making love with muy beautiful Emily. Life is indeed . . . beautiful!

Ahead of me, on the wall of our lounge, is a watercolor painting of quite large proportions, the father of a friend of mine in Sydney, some 30 years ago. Dinah Wakefield. Her father, an english painter and I love his watercolors. Behind me is another watercolor by a far lost friend from South Australia from some 40 years ago. Bill McSwain. The other walls of our house are covered with art, paintings, prints, posters, photographs and fabrics. Emily has decorated her space at the front of the house, beautifully, with collections of many and varied objects and art and fabric. Each of us is reflected in different ways. I love it. It reveals the rich diversity we each enjoy. Our insides reflected in our environment. The same in the garden. The front garden is an eclectic variety of native flora. Much of which I planted 4 years ago. The garden behind is fast becoming a reflection of Emily. Garden beds, fruit trees, compost bins and more. My garage studio and film studio reflect my love of film, photography and writing. A rustic environment indeed. That our worlds met and merged without losing their individual characteristics. That is the true beauty of relationship to me. Two individuals. Living together. Two becoming not one but three. Think about that if you will. Time for a break.

2:44:41pm

Muy emily is making Sardines on Toast as I read Thomas Moore’s June News Letter

>http://www.spiritualityhealth.com/articles/door-ajar< and I quote . . .

“In my practice of therapy, I devote a great deal of time to dreams. They are like X-ray machines showing me what is going on beneath the surface of a life. For years, I’ve noticed this small motif of the door ajar and have thought of it as a key image in the mysterious working out of my psyche.

Like all dream images, the door ajar can mean many things and will be focused to some extent on the dreamer’s life. But I have always kept in mind Emily Dickinson’s iambic lines: “The Soul should always stand ajar / That if the Heaven Inquire / He will not be obliged to wait.”

In other words, we should have an opening in our mind and heart for inspiration or instruction.

The first door-ajar dream I remember was from a woman who didn’t want to hear that it was time to move on in her life and end some key relationships. She kept the door tightly closed and in her dream was terrified when she saw it open ― she was sure she had locked it.

Many people say they are looking for new ideas, inspiration, and a new life, but their doors are closed. They want the new life on their own terms and are unwilling to listen to what “the heaven” may recommend. They want the reward, but they’re not comfortable having any gap in their defenses or being open to the appearance of something new.

I think it’s useful to get over the fear of having your door ajar. On a daily basis, you can practice at having your door at least partially open. Get accustomed to asking a friend, “What do you think?” You’ve opened the door a crack. When deciding where to go or what to do with someone, wait for that person to make a suggestion and be willing to follow. When your tastes or fears or need to control come into play, hold them back, relax, and try something new. These are all exercises in keeping your door ajar.”

- end quote.

I found this fascinating and the idea came to me of an ongoing dream in my own life and that is of plane crashes, be it on an ocean, side of a mountain, wherever, no one ever gets hurt. An “ah ha!” came to me. The plane possibly represented my desire to return to my homeland, New Zealand. Which I did. And where I crash to a stop with Motor Neuron Disorder/Disease. My need and desire to stop as I mentioned previous. And as I said, “careful what you ask for” Indeed :) My creative door has opened to my love of what I now do today. Basically, I am an electronic publisher, my film, images and words go out to a global audience with no copyright issues or controls, this is my gift to others. This is a gift from my guardian angels.

Ciao!

10 May

2:50:01pm

My neck is telling me it’s time to leave the computer and go lie down. For the past four days, Sunday, Monday, Tuesday, Wednesday, oh and a bit today, I have been working on a new portfolio web site for my photographs. This has totally engulfed me and I cannot remember when I was last so empowered. To see my work coming together in a series of albums on the one page has been quite an eye opener. I am not nowhere, nohow a professional photographer, I have simply loved capturing what touches me. People, places and things. Paris, London, Cambridge, LA, New York, the journey has been rich and rewarding and I have a feeling I have captured the essence to quite a nice degree. To see it all come together. Nice! It’s quite a body of work for a few short years. I bought my first Leica in 2005 and so began the journey. I was 62. Today my Leica glass serves me well.

I am going to pause and disconnect my hard drives so I can sit in front of the fire and write without straining my neck :)

3:19:50pm

My glasses, which are new, all of a sudden don’t work for me. I guess my sight has shifted somewhat. In all too short a period of time. Merde!

Just as I began the tea making ceremony my sister phoned and we chatted and laughed . Jennifer had the Vicar over, made Fudge or something and was trying to do two things at the same time. Upside down went the fudge, icing and all, on the kitchen floor. But not to be deterred, out came the spatula and voila upright it came with some first aid needed on the icing. They spent 90 minutes chatting, I am sure the Vicar had no idea.

and now . . .  I am in tea mode. My neck is an issue. I guess my neck muscles are becoming weak. Thank god for my laptop computer that sits in my . . . lap! I have not written for a while. At least not on my Blog. I have managed a few scribbled pages of long hand which, at some point, I may convert to type. Maybe :) In my Al-Anon Fellowship there is an old adage, “once I got busy, I got better” and this week has certainly brought that to bear with my photography. Today I began all over again, selecting images from my American West explorations of 2004 and 2005. I had previously selected but decided in light of my new web presence that I would come at it differently. Stay away from editorializing for now. Later I can select images that I can have fun with. Images of iconic Western scenes which I can make black and white, grainy and suitable for post card. The whole point of this site is to have fun, put my images out there and possibly sell some to pay for the costs I am about to incur. A new bathroom. A new mobile wheelchair. Both expensive and both I need help with. If I could I would pay for it myself and not get involved with bureaucracy. However, I can’t pay for all of it myself. I do need a prudent reserve of some $25000.00. My car is up for sale and that will help. The bathroom and chair are going to cost me some 40 grand. Ouch! Now I know from what I have read, that there are those who set up trusts to raise money and such. That is such a foreign concept for me. I have always paid my own way, pretty much since I was 13. Now I need help and it aint easy. Muy lovely Emily is a powerhouse in this regard and has forms filled and building permits done. Now to deal with the powers that be. Pride is a killer. I need to ask for help, it’s that simple. The first step being the hardest. Practice makes perfect :) And so I had better practice and start support muy lover in her endeavors at doing. I also thought my family would, could, come up short with emotional support. Some have but others haven’t. I get to look at my role in that regard. I need another cup of tea :)

Aaah! I wish I could sell my film footage of the American West. I didn’t want to aim it at New Zealand audiences, but! Maybe I need to bite the bullet and approach Maori TV and simply sell them the footage, hold onto the International rights and see what happens. I sunk over 100 grand into the film so far and two years of my life. And that was just the filming. I have fiddled with the editing for the past year. Food for thought.

3:39:30pm

I would be lost without a good cup of tea or a great pot of coffee. I can still eat. Bread with butter and fresh local Manuka honey. The little mercies of life. And so, here I sit. A log fire blazes. The afternoon light begins to wane. The house is so quiet, so peaceful. My energy is depleted. And I thank Steve Jobs and Apple Computers for designing such a great laptop. I sit here, ergonomically correct with angle of head and distance from keyboard. Not all bad huh! Our little cottage in a semi-rural setting is so comfortable. Rustic my brother called it. I agree. I love rustic living. No white walls, white seating, white bed covers, white towels. Eclectic. Art from the years of living wherever. Furniture from the same. Sets of cups and saucepans from New York and LA and a collection of vinyl from way back in the 70’s. Gratitude and time to stop and relax and maybe have a snooze, maybe :) Ciao!

From: “Mind Games”
“To put my life with ALS into positive perspective, all I have to do is read the paper, watch the news and go back through history.  There have been countless atrocities during the last century alone, causing human suffering at levels that are unfathomable to me.  I’m not a cold, scared teenager on a battle field in a foreign land or a prisioner of the Holocaust.  I am not living a tormented life surrounded by adversity and I do not carry the burden of deeply buried emotional scars.  I am simply a man with a malfunctioning neuromuscular system.  I do not lack shelter or food and I am surrounded by love.  This is an opportunity.  Although some days it’s hard to see it as such, it is an opportunity to learn valuable lessons about life that very few people ever have the opportunity to learn.”

Thomas Simpson French  15 June 1961 – 8 September 2005