The Solitude of Palliative Care

I read One Hundred Years of Solitude in 1996, while my mother and I nursed her mother through the final months of terminal cancer. I had grown up with my grandmother and her stories. She was born in 1912 and did not go to school, instead she rode wild horses through prickly pear on the central western Queensland cattle property her father had built from scrub. She grew up with tribal Aborigines, with the Depression, self-sufficiency, but also dressing for dinner and having books sent out from England by boat.

The experience of reading One Hundred Years of Solitude at this time changed my life. My grandmother died about the same time I finished the book, and I returned to my inner city bohemian share house in Sydney and sold all my possessions. I then began four years of constant travel around Australia and around the world. I earned my money by being a street musician, boat builder, farm laborer and smuggler. I had entered the world of possibility and coincidence.

For me the fluid, cyclical and charmed world of One Hundred Years of Solitude cast a glow over everyday life. It gave me courage to take a chance, to throw caution to the wind and step outside the habits and routines of what is expected by some unwritten social code. The characters shimmered and flickered and died, not living safe and predictable lives, but remaining true to their inner thoughts and feelings. The world is amazing. This is what Gabriel Garcia Marquez taught me.
 

Published in The Guardian Online: The Solitude of Palliative Care

Dad: Thoughts to an Obituary

James Arthur Barrett 1 May 1940-22 January 2013

To have known James Arthur Barrett was to have been admitted into a world of history, magic, great events and into the lives of people who attained greatness or infamy by their deeds. The spirit of adventure, even if it was pressed upon the page, was always present in his conversation and in the space around him.

As a child it was fascinating to listen to my father’s stories about the two years he spent travelling the world with my mother. The thought of traveling overland from London to Singapore seems impossible today. But Jim and Roslyn did that and spent years talking about it afterwards. As soon as he could, their oldest son attempted to emulate the feelings he experienced as a result of such stories by setting out himself for world travel.

Jim manifested his curiosity and knowledge in a myriad of ways. Jim’s creativity and inquisitiveness extended from writing poetry (he once had a poem published in ‘The Bulletin’ according to reliable sources), to his many pursuits. Pottery, jewelry making and lapidary, photography, studying languages (particularly Latin, Chinese and Japanese), book binding and the quest for the perfect curry were some of his more long lasting passions.

Of course there was also the family. Up to the very end of his life, Jim was concerned and shared all he had with his family. His partnership with Roslyn lasted 48 years, and his concern for his children and grandchildren was always paramount in his mind.  He inspired all of us towards a love of knowledge, a curiosity about the world and a strong sense of compassion for all.

 

 

Escape Velocity

Velocity is the speed of an object and a specification of its direction of motion

Camping Summer 2011

Benyamin

Benyamin by Silas
7th May 2011

Snowy Sunday

My Weekend

My youngest son, Benyamin and I at a local culture festival on Saturday. The photo comes from local newspaper Västerbottens Folkblad, who ran an article about the building behind us in the image. It is a youth center at the moment but will be closed in the new year. Suggestions are being made for what it should become. Of course, I said it should be a center for music and performance. The article in Swedish is here.

My Parents

James (b 1940) and Roslyn (b. 1944) Barrett. My parents. Toowoomba, Australia, July 2009.

Benyamin Post Op

The surgery is over. Ben had an x-ray this morning and a check up with the doctor and everything looks good at this stage. In a few weeks we will be returning to the hospital to have the implants activated and Ben will begin to hear sound. Until then he is totally deaf. It has been a stressful couple of days but things are starting to feel better today.

Benyamin Goes to Hospital

The blogging will be sparse over the next few days. We are taking the train to Stockholm tonight, arrive tomorrow and Benyamin will be having surgery for bilateral cochlear implants beginning on Wednesday morning. I expect everything to go well.....but have my fingers crossed at the same time. We should be back home on Friday morning.

Implanting Ability

On October 29th my youngest son will be having cochlear implants surgically attached to and inserted into his body. He is practically almost deaf at the moment. The implants will not be activated until late November. The prospect of surgery and a demanding and long process of rehabilitation is both exciting and frightening. What really strikes me is the level of technology involved and how much it hopefully will help Ben.

In the context of Ben having implants is the amazing world of the transhuman. Today I was made aware of a new online magazine, h+ (PDF) which deals with the broader issues around the transhuman, I suppose in the sense of posthumanism:

Humanity Plus (formerly the World Transhumanist Association) – in collaboration with former Mondo 2000 editor RU Sirius -- is pleased to present h+. A web-based quarterly magazine, h+ covers the scientific, technological, and cultural developments that are challenging and overcoming human limitations. Recently, there has been a growing and evolving public discourse about new technological trends and possibilities. Scientists and edge thinkers are talking about– and working on -- slowing or ending aging; body and brain enhancement; biological control of the genome and the evolutionary process; and the possibility of a technological singularity brought on by AI… to name just a few of the interests and obsessions of this new edge tech culture. h+ magazine is all over it.

Beautifully designed by virtual worlds artistic legend D.C. Spensley (AKA DanCoyote in Second Life), h+ is accessible, stylish, contemporary, and sometimes playful. h+ aims to provides an entry point for intelligent people to develop an awareness of this new technological paradigm, while also providing an outlet and a voice for those who are already hooked in to the "transhumanist" vision

.

It all seems a bit new at the moment. But a new world may be opening up here.

Back to the Sickhouse

In Swedish it is Sjukhuset ('The Sick House' is the literal translation) but in English it is Hospital. We are back to the hospital today with Ben (pictured above with hearing aids in situ) for the xrays that he was supposed to have two weeks ago.
Yesterday we went to our first sign language class, it was interesting but perhaps more complex than I thought it was going to be. Its a new language and the only experience I have to compare it to is when I started to learn Swedish in formal classes in 2000. Lots to remember.

Ben Visits the Hospital Part 2

Tomorrow Benyamin (2 years..pictured in dramatic jam sprayed close up) goes for his second visit to the hospital to see what's wrong with his hearing. He will be having a general anaesthetic and while he is out they will be doing an MIR scan and a conventional x-ray of his inner and middle ear respectively. Hopefully this will show why he is so diminished in his hearing in both ears. There is a nurses' strike that began today in Sweden (they are paid very low wages comparatively with what others earn following a similar period of time that is required to finish their education) so we were not sure if the procedure would be going ahead. But they are prioritising children so Ben is up for it tomorrow at 7:30am. I will be off the air for a time as a result. See you on Wednesday. Good luck Ben!
Update: We arrived at the hospital at 7:30 and the preliminaries began. It was decided that Ben had a slight cold with a slight fever and therefore it could not go ahead. We were home by 9:00am and the examination will take place later. Maybe after the nurses stike ends, which may be weeks away.

Happy Birthday Hearing Ben

philip glass: metamorphosis 2 (piano by branka parlic)

This day, 5th March is my birthday. I was born in 1969...sounds like a while ago when there is a one and a six and a nine involved. But honestly I have stopped paying attention. As long as my body holds up everything is OK and when it stops then I will go back to self-medication meditation. In the meantime there is so much to see and do. Today for example was a special day and not because of another year on Mother Earth rolling over me.
As mentioned Benyamin James is my 2 year old son who has been having some attention drawn to him by daycare and then health professionals due to a lack of hearing. Today we woke early (the whole family) and went to the local public hospital (a hive of a place with tunnels and doorways and people everywhere) for Ben to be given a general anesthetic and have his hearing probed, tested and examined. It took between 9am and 3 pm to get into and out of the hospital. A birthday I will not forget. To remove the future fluid he had surgery to put tubes in the eardrums. We will know on Monday the details of what was found with Ben's hearing but it seems that was the problem. This is the best birthday present I think I have ever been given. While we have been preparing ourselves for the possibility that Ben was/is hearing impaired (and in a way that was fine because so is he..so fine) it seems most likely now that he is not hearing impaired (he is still so fine). Today I remembered the important things.
UPDATE: It seems that my positive interpretation of the situation was not so accurate. Ben, we were told on Tuesday by the doctor is severely hearing impaired. While this is of course a difficult thing to deal with, it is also about who Ben is. We are getting a lot of support from the health care professionals and Ben himself is a happy and healthy little boy. The future looks filled with possibilities and we will be taking one step at a time.

The Hermit of the Open Laptop

I have sort of gone into hiding this week. Well physically anyway (I am still blogging and the mobile is on). It is the first week for a long time where I don't have anything booked to do at university. At the same time my youngest son is going to be tested on Wednesday to see if he may be partially deaf (long story..he does not seem to hear so well and it involves a general aesthetic). As well my oldest son is at home for most of the week with a week's 'sport holiday'. Erika (partner, wife, mother to the two already mentioned) is also suffering from a back injury. So I am working at home. Not easy in one sense as there are always other things to do but at the same time I tend to find many distractions at university as well (coffee and biscuits - 'fika' in Swedish, the library, talking to colleagues, writing in my blog, reading RSS, cafes, bookshop, more talking to people and so on). Today I have actually managed to get quite a bit of work done (found some good sources on iteration in narrative, planned out the whole chapter and began revising the first draft of 13 pages). I am writing a thesis chapter on design and implied response in digital literature (Seminar 8th April). It is supposed to deal with the bits of a work of digital literature that contribute to the story but are not directly part of it as language. Like the way sound or the visual layout is used to address the respondent to the text. I am really enjoying it, in fact it is the first chapter so far (my third.......well fourth if you count the first misadventure) where I feel sort of like I know where it is going. How it is going to get there is another matter.

Dialogic and Ferlinghetti and Christmas

I had the fortune to discover an excellent blog last night: Dialogic by Thivai Abhor:

In Kathy Acker's disturbing novel "Empire of the Senseless" Thivai/Abhor are the two main characters. These two characters are products of a horribly diseased society and I combine the names in order to give expression to the absurdity of strict dualistic systems and monologic thinking. Instead we celebrate the wondrous chaotic creativity of relational thinking and polylogical discourse. Thivai Abhor is the revolution of the senses, freedom of expression, the virus that will eat the system from the inside out. Thivai Abhor is a catalyzing enteran that seeks to alter the corrupt system through pirated words and frenzied responses. Thivai Abhor operates in the margins of mutated meanings, seeking a new way of being, becoming, understanding and knowing. Thivai Abhor is the monstrous result of a system that eats its young. We are the Multitude!!!

From Dialogic this morning comes this wonder, an hour of Beat Generation recollections and present day situationism from 88 year old Lawrence Ferlinghetti. The text, video and audio streams are online at Democracy Now!, but consider this quote from Ferlinghetti's latest book, Poetry as Insurgent Art:

What are poets for in such an age? What is the use of poetry? If you would be a poet, create works capable of answering the challenge of Apocalyptic times, even if this means sounding apocalyptic. You have to decide if bird cries are cries of ecstasy or cries of despair, by which you will know if you are a tragic or a lyric poet. Conceive of love beyond sex. Be subversive, constantly questioning reality and the status quo. Strive to change the world in such a way that there’s no further need to be a dissident. Read between the lives, and write between the lines. Be committed to something outside yourself. Be passionate about it. But don’t destroy the world, unless you have something better to replace it.

So with the words of Lawrence Ferlinghetti in my mind, I stumbled out this Christams morning to try and find some batteries to buy for one of my son's presents he was given yesterday (in Sweden Christmas is celebrated on the 24th). The shop was closed until midday and the streets where deserted. The build-up that has been part of our lives since late November (the 'gift of the year'...only twelve days to Christmas.....buy buy buy) had suddenly broken and the suburb where I live was silent and empty. Where was the festival?

Yule 2007

Like a ghost town is my quarter
Christ returns to closed windows
Population sleeping off pudding
Punch and the last minute shopping

Home is quite but for the presence
Played by electric bling sounds
Moving pictures and a plastic weld
Holding the fragile scene together.

Far away from our screens and streets
Others are not aware of the celebration
Broken feathers gather in dusty townships
While sour winds blow down from the north.

Christmas is when the West breathes out
Belches and stumbles on its way from work
As 'A Whole Lot of Love' plays on an iPod
And a million trees wilt quietly in the corner.

Where exactly was the festival?

/Jim B.

Joy and Peace

Merry Christmas (the Mp3)

Ålidhem Festival Videos

I played twice at the Alidhem Festival yesterday. Once as part of a presentation Australia Land and People in the library (about 15 people in the audience) and then at night in Krogan Krogan bar. The night performance went well but there is no video of it. Here are two short videos from the library presentation, complete with Silas and Ben:

Leijon 2000-2007

I have just heard that out cat of 7 years Leijon was killed an hour ago by a bus. I am so very sad. A friend and companion has left us. My son will be so upset. I will have to pick him up early today. Funeral this afternoon, in the forest near our home.

Family Jam

The Family Jams. Last Friday we spent the day playing 'music' at home. I was inspired by a couple of visits to the house of friends in Australia recently.