I am still here. Change keeps happening. My son is waiting for his first niece, She is now due. I am still alive. The babies are happy about us excited. B and Dane are seeing if they can keep
I feel more alive. Not less but the measurements measure differently
Monday, December 29, 2014
Sunday, October 26, 2014
Saturday, October 25, 2014
Letting Go and Hanging On For Dear Life
Right now, after weeks in the hospital expecting to die but living has changed so many things.
I am now very medically fragile and will continue to be. My husband has left work which he deeply loved, to care for me. He has to do things like give injections and negotiate care and does so by leaving piles of dignity. And manage an impossible long list of medications and medical appointments. All his management skills have kicked in. Along with dedication and love.
Steroids to keep my lungs functioning, Sometimes I can walk and sometimes I can't do it very well. Sometimes communication is nearly impossible because of pain and frustration.
I was about to end all medical treatment and silently start to let go but waited a little too long. I can't do that now. Because the cancer cell count has plummeted but a tumour is in my skull and in T3 in my spine. The adjuvent chosen has killed cancer when that wasn't expected. The booster to the adjuvent has destroyed my core health. And the huge blood clots came from late stage cancer.
Both of us have let people go from our life. Without much sadness at all really. The sadness of this far outweighs other loss for both of us. This one is just far too big to deal with other people who don't come through or make anything sadder or more difficult.
We are truly surrounded by caring and friends. There is quality to life for this precious while.
And after 33 years with all that means we get this next little while.
I watched death in the hospital a few times when I was there. I could not see it but knew because the environment changed with the routine and the caregivers burdened faces. They were moodier after. Less patient or sometimes a little more giving. Families could be heard a little but it was their walk out of the room that was so clear. Almost single file with eyes straight ahead.
It is like that now. Eyes straight ahead when needed.
But I get to go back to Swee
thaven for the weekend. Tim has surrounded me with my art supplies and I have played a little and he has started reading me a series of interconnected myths and sociology about living solo in a crowded world. He has explained why our relationship exists, continued to morph and then thrive. And that had to do with both our capacities to speak truth (loud or not) to maintain intimacy and recognize quiet and personal agency. We spend time with others and simply end up retreating into what no longer needs tinkering with. Just us.
I have always thought it had a lot to do with his genuine open minded patience and respect for others. And certainly for me. He has almost no capacity for cruelty and may judge others but from a genuinely fair lens. He is unbelievably kind.
I have not once felt to be a burden to him. Not once.
 |
| Detail of quilt made by my Great Grandmother Mabel Della Wells. It was a gift to my Grandmother for her marraige. Cotton with a lamb's wool batt. I slept under it as a little girl on the farm. |
Wednesday, October 22, 2014
Day with Mother
Today my mother showed up and I had a chance to grill her for names. And arrival times in Canada` from Ireland and England.
And we sat there holding some sad facts. Her mother and her mother's mother were dedicated to textiles. My great grandmother was placed in an Ursuline Convent in Quebec when she was very young and like many Irish girls of the time were essentially enslaved to embroider white work to make profit for the Catholic Church, She was very clever and considered beautiful.
Her strength was legendary. One day a masked man came into the shop she owned in Montreal. He had a gun and in an instant reaction she leapt on the counter and slapped him hard a cross the face and became a ferocious being and grabbed his gun. He was so shocked he ran fast from the store with Mary Josephine cursing him all the way down the street.
The Church continued to control part of her life well into adulthood until the priests told her she had to bury her mother in a High Mass and pay for it. She only wanted to pay for a Low Mass. She had already dedicated much of her life to helping them raise money. After working very hard for every dime as did her husband. So she would not. She held her ground. Fiercely. And she won. But it changed her dedication to the Church. And it changed my grandmother's dedication who chose to leave when she married.
And one daughter only to each of them. Except me. I have only sons.
A few years ago my mother chose to return to the Church.
My mother is giving me my Great Grandmother's picture. Mary Josephine. I have seen it once or twice. She had beautiful auburn hair. But my mother and her mother had jet black hair. I am blond like my father. We are Hiberno- Norse genetically with a little Spanish Armada on that side of my family.
My hands have run over the leather of the Prayer Book from Ireland and the Rosary beads.
Beautiful carved black leather and silver clasps. When I was twelve I went through it page by page. Generations of women had placed blossoms on the pages to press. And there were writings in the margins. My Grandmother writing that she was struggling but deciding to leave the church. "My Lord I forsake Thee!" in a childlike and emotional hand. I cried. The same Grandmother called "Nanny". I have the dresser from Mary Josephine's house. And my Nanny had crawled underneath and drawn a picture of Mary Pickford in a beautiful pencil drawing that she had managed to etch the wood with. My signature from first grade with the girl with braids picture I drew.
Nanny was my primary parent when I was young. I watched die as a little girl. And my mother Katy had to reclaim me. But I was completely lost and abandoned. I did not belong to her. I did not know about gene pool.
And we sat there holding some sad facts. Her mother and her mother's mother were dedicated to textiles. My great grandmother was placed in an Ursuline Convent in Quebec when she was very young and like many Irish girls of the time were essentially enslaved to embroider white work to make profit for the Catholic Church, She was very clever and considered beautiful.
Her strength was legendary. One day a masked man came into the shop she owned in Montreal. He had a gun and in an instant reaction she leapt on the counter and slapped him hard a cross the face and became a ferocious being and grabbed his gun. He was so shocked he ran fast from the store with Mary Josephine cursing him all the way down the street.
The Church continued to control part of her life well into adulthood until the priests told her she had to bury her mother in a High Mass and pay for it. She only wanted to pay for a Low Mass. She had already dedicated much of her life to helping them raise money. After working very hard for every dime as did her husband. So she would not. She held her ground. Fiercely. And she won. But it changed her dedication to the Church. And it changed my grandmother's dedication who chose to leave when she married.
And one daughter only to each of them. Except me. I have only sons.
A few years ago my mother chose to return to the Church.
My mother is giving me my Great Grandmother's picture. Mary Josephine. I have seen it once or twice. She had beautiful auburn hair. But my mother and her mother had jet black hair. I am blond like my father. We are Hiberno- Norse genetically with a little Spanish Armada on that side of my family.
My hands have run over the leather of the Prayer Book from Ireland and the Rosary beads.
 |
| Stitches on this done by Mary Josephine, Mary, Kathleen Mary, Patricia Kathleen . French knotted silk stitched on hand drawn linen. Started in the 1920's but an ongoing project. |
Nanny was my primary parent when I was young. I watched die as a little girl. And my mother Katy had to reclaim me. But I was completely lost and abandoned. I did not belong to her. I did not know about gene pool.
Monday, October 20, 2014
Brewing
Medications in line right now. Body adjusting. Going in for infusions today. Tim and I negotiate injections every day. He gives them to me and sometimes they hurt. I am still afraid of them. I would have been the worst junkie in the world. Just hope the blood thinners are working.
Have learned I need way less pain killer if they are available and I take them with regularity. Down to half when things are managed carefully. This means I can think. Plan. And create. Having all this time has started to fill up sketchbooks with ideas that are cohesive. Having dreams about full projects really helps. Everything there. Including visuals on materials needed. And I can read again. Real words. Academic papers instead of small articles. About fiber, Vikings and burial containers. All directed by a stream of genetic connection and personal history.
And one of the nurses in the hospital heard I was a fiber artist. He came and talked for a long time. About a museum for Islamic textiles. He brought in images of some of the breath taking 700 year old protection garments. Gold and precious metals woven into script. And fragments of the prayer cloths from Mecca. He is a calligrapher who works with fine vellum made from baby deer. He thinks they can be stitched and have been. My desire to work with the fundamental kicked back in Mayne. I pulled him together a list of contacts. He made sure I had oxygen, shots and medication. And inspiration. And true compassion. Sharing of ideas.
Arthur came by. I insisted I be listed as atheist when asked about a spiritual advisor. I only wanted a Unitarian Universalist who was a humanist or atheist support. Impossible. But he actually existed. And he came. And helped. Really helped shake me from the terror of being in a huge institution and powerlessness.
And a young nurse who just graduated from school in Montreal. Bright blond Irish and from between Cork and Wexford. From my mother's neighbourhood in Montreal. Comfort. When I experienced distress late at night she figured out I needed something else besides Atavan or Hydro-morphone. She scooted down the hall and found some potato chips. And closed the door and shared them because potato water was in our blood. And laughed. All anxiety dissipated immediately.
Never doubt cracks in the walls where true human beauty pours out.
I didn't die. I was completely ready. But once more life continues for awhile. More damage than before and more challenge but this can be handled. Upright far more often now. Pretty shaky but getting some core energy back. I am so well cared for. Bren. My mother. Christine. Gayla. Birgitta.So many people. And lots of people dropping in. And Tim kicks everyone out when he sees me going under. I have a hard time noticing that. He is very conscious and protective. And more than real.
The sun streams into this apartment. It is a soft and lovely place to do this. Such a sweet little cave.
Have learned I need way less pain killer if they are available and I take them with regularity. Down to half when things are managed carefully. This means I can think. Plan. And create. Having all this time has started to fill up sketchbooks with ideas that are cohesive. Having dreams about full projects really helps. Everything there. Including visuals on materials needed. And I can read again. Real words. Academic papers instead of small articles. About fiber, Vikings and burial containers. All directed by a stream of genetic connection and personal history.
And one of the nurses in the hospital heard I was a fiber artist. He came and talked for a long time. About a museum for Islamic textiles. He brought in images of some of the breath taking 700 year old protection garments. Gold and precious metals woven into script. And fragments of the prayer cloths from Mecca. He is a calligrapher who works with fine vellum made from baby deer. He thinks they can be stitched and have been. My desire to work with the fundamental kicked back in Mayne. I pulled him together a list of contacts. He made sure I had oxygen, shots and medication. And inspiration. And true compassion. Sharing of ideas.
Arthur came by. I insisted I be listed as atheist when asked about a spiritual advisor. I only wanted a Unitarian Universalist who was a humanist or atheist support. Impossible. But he actually existed. And he came. And helped. Really helped shake me from the terror of being in a huge institution and powerlessness.
And a young nurse who just graduated from school in Montreal. Bright blond Irish and from between Cork and Wexford. From my mother's neighbourhood in Montreal. Comfort. When I experienced distress late at night she figured out I needed something else besides Atavan or Hydro-morphone. She scooted down the hall and found some potato chips. And closed the door and shared them because potato water was in our blood. And laughed. All anxiety dissipated immediately.
Never doubt cracks in the walls where true human beauty pours out.
I didn't die. I was completely ready. But once more life continues for awhile. More damage than before and more challenge but this can be handled. Upright far more often now. Pretty shaky but getting some core energy back. I am so well cared for. Bren. My mother. Christine. Gayla. Birgitta.So many people. And lots of people dropping in. And Tim kicks everyone out when he sees me going under. I have a hard time noticing that. He is very conscious and protective. And more than real.
The sun streams into this apartment. It is a soft and lovely place to do this. Such a sweet little cave.
 |
| Old thoughts on Mecca. "Return to Mecca" Portion of a five meter length of velvet. Complex cloth. Done by me and in the collection of Christine Basque. |
Friday, October 17, 2014
New Landings
I have been in the hospital for the last 16 days.
I came home last night to my little Vancouver apartment and slept in my own bed.
My postings have been non existent.
I am still alive. I was rushed by ambulance to Acute Care from the Cancer Clinic with lungs full of pneumonia. I had no wait in the Emergency Ward and was placed on oxygen and pain killers immediately. I was surrounded by more specialists and nurses than I can imagine. I have almost no memory of a week of my life.
Sometime during that time I was placed in a room alone. The room was gorgeous and overlooked the ocean and the beautiful city. I woke up and fell to sleep to the sight of ships and clouds through huge windows.
My lungs started to collapse and I fell into an abyss fighting for every breath. I would wake to my mother, my children, my vigilent husband, my brothers, my closest friends and extended family.
I started to lapse into release. Letting go. But I was constantly bouyed by my pod who kept me floating. To nurses who heard my need for some comfort and to the biggest stream of Doctors and baby Doctors I can imagine. Specialists doing their best to claim part of me. I railed against their direction at times and Tim kicked in as the most loving and incredible advocate who without fear explained me to them in a way no one else could.
They decided to take away some drugs I relied on to make my life work and suddenly it really started not to work. Avalanches were caused. Everything hurt worse. It was ferocious. The terror and blood pressure became worse. I developed blood pressure problems. Veins started to clog up and develop a deep vein thrombosis and clots that are more than 16 inches long.
And then they did what I needed them to. They did the worst thing I can imagine and made a decision to wash my lungs. To try and identify if I could be treated for a chemical pneumonitis or continue to be treated for infection. There was never infection but a drug interaction that was doing this. A mistake and side effect. The lung washing will leave me with terror for the rest of my life. But it kicked in my lungs and my care. There was no infection anywhere. I was no longer the threat to infect others. I just needed to be rescued from a very bad drug.
I was given other tests that showed more and more. The cancer has left my lungs and some of my lymph nodes. It has not just kept still and even. Cancer has died. I am just on an adjuvent which is acting like a chemo. It is killing some of this cancer. The cancer is in my skull but is not showing up in my brain. I am not cancer free. Just freer of cancer. Less there.
The issue for the last few months was a drug that was a booster to the adjuvant. It would help the statistics slightly. But it back fired. Big time.
I am left with a permenent condition with the chemical pneumonitis and will be on blood thinners for the rest of my life. My voice has been changed. The collapsed lungs will never fully repair. But I can stand up, think and create once again. I tried to sing. No possibility. And I am so deconditioned it will take months to repair my strength. I cannot walk without help to the car. I can no longer lie flat in my bed.
When I was being dismissed yesterday one of the Doctors turned around and said, "You are one strong woman. Go home. Don't come back!"
I have to deal with the mess and the expense that are left but I am home.
Spent my first day out in a wheelchair. I can walk a bit but not for long without breath.
Breath is so precious. So is good, clean air.
I came home last night to my little Vancouver apartment and slept in my own bed.
My postings have been non existent.
I am still alive. I was rushed by ambulance to Acute Care from the Cancer Clinic with lungs full of pneumonia. I had no wait in the Emergency Ward and was placed on oxygen and pain killers immediately. I was surrounded by more specialists and nurses than I can imagine. I have almost no memory of a week of my life.
Sometime during that time I was placed in a room alone. The room was gorgeous and overlooked the ocean and the beautiful city. I woke up and fell to sleep to the sight of ships and clouds through huge windows.
My lungs started to collapse and I fell into an abyss fighting for every breath. I would wake to my mother, my children, my vigilent husband, my brothers, my closest friends and extended family.
I started to lapse into release. Letting go. But I was constantly bouyed by my pod who kept me floating. To nurses who heard my need for some comfort and to the biggest stream of Doctors and baby Doctors I can imagine. Specialists doing their best to claim part of me. I railed against their direction at times and Tim kicked in as the most loving and incredible advocate who without fear explained me to them in a way no one else could.
They decided to take away some drugs I relied on to make my life work and suddenly it really started not to work. Avalanches were caused. Everything hurt worse. It was ferocious. The terror and blood pressure became worse. I developed blood pressure problems. Veins started to clog up and develop a deep vein thrombosis and clots that are more than 16 inches long.
And then they did what I needed them to. They did the worst thing I can imagine and made a decision to wash my lungs. To try and identify if I could be treated for a chemical pneumonitis or continue to be treated for infection. There was never infection but a drug interaction that was doing this. A mistake and side effect. The lung washing will leave me with terror for the rest of my life. But it kicked in my lungs and my care. There was no infection anywhere. I was no longer the threat to infect others. I just needed to be rescued from a very bad drug.
I was given other tests that showed more and more. The cancer has left my lungs and some of my lymph nodes. It has not just kept still and even. Cancer has died. I am just on an adjuvent which is acting like a chemo. It is killing some of this cancer. The cancer is in my skull but is not showing up in my brain. I am not cancer free. Just freer of cancer. Less there.
The issue for the last few months was a drug that was a booster to the adjuvant. It would help the statistics slightly. But it back fired. Big time.
I am left with a permenent condition with the chemical pneumonitis and will be on blood thinners for the rest of my life. My voice has been changed. The collapsed lungs will never fully repair. But I can stand up, think and create once again. I tried to sing. No possibility. And I am so deconditioned it will take months to repair my strength. I cannot walk without help to the car. I can no longer lie flat in my bed.
When I was being dismissed yesterday one of the Doctors turned around and said, "You are one strong woman. Go home. Don't come back!"
I have to deal with the mess and the expense that are left but I am home.
Spent my first day out in a wheelchair. I can walk a bit but not for long without breath.
Breath is so precious. So is good, clean air.
 |
| Me. Trying to catch my breath. |
 |
| Day before release minus most of my hair. Day 15. |
 |
| Beloved Butterfly who made it to my window as a gift one morning. I needed to be reminded of frailty . |
 |
| One little stitch at a time. |
Saturday, September 27, 2014
Marja Van!!!!
Tim went to the post box and pulled out a little package and it contained the whole world.
This beautiful piece of marvel was made by M-a-r-j-a Van. She teaches in the Far North.
Postmarked Inuvik.
Thank you Ms. Van!
.jpg)
Photo taken in bed. Better shot tomorrow. This is a detail of the beautiful natural dyed scarf
Marja Van has made and gifted me.
This beautiful piece of marvel was made by M-a-r-j-a Van. She teaches in the Far North.
Postmarked Inuvik.
Thank you Ms. Van!
Marja Van has made and gifted me.
Wednesday, September 24, 2014
Spiritual Artists
Spiritual practice and art are not the same thing. Not to me.
Your flimsy and exploitive marketing tactic is more than tired. There is nothing remotely deep in most people's work that is described as spiritual. It is tiresome and often reflects a shallowness I didn't imagine was even possible to achieve. Appropriated crap. Not spiritual.
Art, to me, is best when it reflects self, environment or connection. Sometimes the simplest line can do that. Simple object well thought out and resolved. Refined. Pared down. Matured. Of self and effort and talent.
It takes more work than to hysterically figure out label after label for yourself. Don't call yourself anything if you are sampling and exploring. You are not a conceptual artist until you have explored concept. Really explored an idea and not shit it out for amateur show or two. Lived it.
Needing to describe yourself in early practice is unnecessary but learning is okay. The labels really don't let you get away with anything.
I love blind jurying. It separates the wheat from the personality or attractiveness. It removes the bimbo factor, the friendship, the potential connection. It is scary. No artist's statement to dazzle and distract jurors. No fancy stories over ridiculous work. Just it... Raw presentation. The cream always rises and the substantial holds an honest place.
Your true art will stand out as it is if you shut the fuck up about it. Cliche description is worth nothing as the work stands there naked.
Needing to use labels like Soulful Art. The Sacred Feminine. Etc. dismisses it all for me. As does making a bloody mess and experimenting and hanging it on the wall because you are afraid of the strength of one single piece. Nothing but the best you have. Not from an experiment but from a long term exploration and mastery. Effort. Hard,hard work. Research. And admitting what belongs to you and what belongs to others.
I could give a damn about your spirituality.
Your flimsy and exploitive marketing tactic is more than tired. There is nothing remotely deep in most people's work that is described as spiritual. It is tiresome and often reflects a shallowness I didn't imagine was even possible to achieve. Appropriated crap. Not spiritual.
Art, to me, is best when it reflects self, environment or connection. Sometimes the simplest line can do that. Simple object well thought out and resolved. Refined. Pared down. Matured. Of self and effort and talent.
It takes more work than to hysterically figure out label after label for yourself. Don't call yourself anything if you are sampling and exploring. You are not a conceptual artist until you have explored concept. Really explored an idea and not shit it out for amateur show or two. Lived it.
Needing to describe yourself in early practice is unnecessary but learning is okay. The labels really don't let you get away with anything.
I love blind jurying. It separates the wheat from the personality or attractiveness. It removes the bimbo factor, the friendship, the potential connection. It is scary. No artist's statement to dazzle and distract jurors. No fancy stories over ridiculous work. Just it... Raw presentation. The cream always rises and the substantial holds an honest place.
Your true art will stand out as it is if you shut the fuck up about it. Cliche description is worth nothing as the work stands there naked.
Needing to use labels like Soulful Art. The Sacred Feminine. Etc. dismisses it all for me. As does making a bloody mess and experimenting and hanging it on the wall because you are afraid of the strength of one single piece. Nothing but the best you have. Not from an experiment but from a long term exploration and mastery. Effort. Hard,hard work. Research. And admitting what belongs to you and what belongs to others.
I could give a damn about your spirituality.
Pale Butterflies
I have been withdrawing from the methadone that they gave me as a substitute for the morphine I can't tolerate. Turns out that withdrawing is pretty rough. Not as rough as the side effects. I am now stunned to discover I can't take narcotics without big trouble.
Not great. Luckily my pain level has subsided a bit with the lack of activity.
Life is made easier by my husband. We are now alone. For three days.
He is trying so hard. I am being really sick and difficult. I have held down two meals in a month. I struggle to keep fluids in. The coughing retching uses hours a day.
I visit people and can barely sit up. Not very good at being a sick person.
My anger stuns me. Keep having to remind myself that it is a side effect of two drugs. And that anger is part of this.
I am doing the best I can.
Tim found me three beautiful pale butterflies that died in the windows during the mating frenzy.
Not great. Luckily my pain level has subsided a bit with the lack of activity.
Life is made easier by my husband. We are now alone. For three days.
He is trying so hard. I am being really sick and difficult. I have held down two meals in a month. I struggle to keep fluids in. The coughing retching uses hours a day.
I visit people and can barely sit up. Not very good at being a sick person.
My anger stuns me. Keep having to remind myself that it is a side effect of two drugs. And that anger is part of this.
I am doing the best I can.
Tim found me three beautiful pale butterflies that died in the windows during the mating frenzy.
Thursday, September 18, 2014
Post Box
I love having a post box at the end of the Sweethaven Road.
I never know when a surprise will arrivve.
My favourite gifts are hand written letters. I love the personality and love each hand drawn word each person makes.
This mornings mail brought this beautiful letter from Abbe. I have know her for so many years.
My eyes danced across her words. What a beautiful gift! It will be placed on the wall at the foot of my bed to remind me of the kindness and thoughtfulness people have by giving of their time to share words of encouragement and friendship.
I never know when a surprise will arrivve.
My favourite gifts are hand written letters. I love the personality and love each hand drawn word each person makes.
This mornings mail brought this beautiful letter from Abbe. I have know her for so many years.
My eyes danced across her words. What a beautiful gift! It will be placed on the wall at the foot of my bed to remind me of the kindness and thoughtfulness people have by giving of their time to share words of encouragement and friendship.
Bad Drugs
I had a great appointment at the BC Cancer Agency today.
Not what I expected. Our discussion moved from cell counts, dosage and severe side effects to quality of life issues.
Tim was ferocious regarding what happened to me during the MRI. I was physically hurt through complete willful belligerence. He was furious about the fact my Oncologist actually expected many of the side effects that have happened to me not as a result of the hormone blocker but as a result of the booster drug. It was not a necessary drug and the other drugs work fine without it.
I have been in bed most of the time since August and have had such serious side effects I had to be watched 24 hours a day. These side effects were severe vertigo, vomiting enough to lose an enormous amount of weight, at least one nose bleed a day and bad pain. I also developed severe and debilitating reactive airway symptoms that managed to make it so breathing was difficult and my oxygen sats dropped 6 points. The depression and emotional impact of the drug was also huge and life ruining.
All off this not part of a necessary drug regime.
Tim had to take time off work when it may not have been that necessary and friends have had to come in and care for me. We have had to hire someone and buy expensive off protocol drugs to get me through this. Tim was sure that I was not going to make it through the fall.
I am definitely not through it yet but one day off the drug the side effects have dropped by half. I can almost breath clearly, I stood up without fainting or tipping over. I ate real food and kept it down.
Tim and Femke are hovering in the sweetest way. I hope they can stop doing that. But to have their love and care is enormous. And I will never doubt my beautiful husbands dedication and love again.
I look at him and he glows with the most serene and beautiful light. He has barely had a minute to himself or a good nights sleep in weeks. I am overwhelmed. His generosity and kindness have made this almost worth it.
He put up the beautiful antique canopy bed in our bedroom. He painted the hallway and the second floor. He lovingly created another space for me to sleep in the big window in the living area. It meant he had to re purpose and construct platforms while Femke, Chris or Judy watched me. It is a beautiful, peaceful space where I can take part in the life of Sweethaven while still in bed.
Femke pulled out my needle bag and handed me wool. It was very hard to coordinate myself at first but it is now happening. I am using my hands today.
It looks like I might get a little reprieve where I will hopefully be able to finish documenting my work and try to make some new work. All the plans are there. The material is there. And so is a little bit of energy.
Time for all the crap to get shoveled out of here and scrapped off my shoe to make way for decent people and experiences. I have learned so much this fall. Lots of it not happy. Some of it shockingly ugly. But lots of beauty. There is clearly no more time to follow any other agenda but the one Tim and I define. He is with me for six months if we are lucky enough to have six months. If not... we will make other plans.
I am deeply in love with the man I chose to spend my life with and raise a family with and start to grow old with. Even though it has been 33 years. It is better right now than it has ever been because of the deepest connection possible. He is a truth teller, has nothing selfish or shallow about him and he lives with integrity every single day. I could never measure up but I will seriously try.
Right now I am hungry. For the first time in weeks.
Not what I expected. Our discussion moved from cell counts, dosage and severe side effects to quality of life issues.
Tim was ferocious regarding what happened to me during the MRI. I was physically hurt through complete willful belligerence. He was furious about the fact my Oncologist actually expected many of the side effects that have happened to me not as a result of the hormone blocker but as a result of the booster drug. It was not a necessary drug and the other drugs work fine without it.
I have been in bed most of the time since August and have had such serious side effects I had to be watched 24 hours a day. These side effects were severe vertigo, vomiting enough to lose an enormous amount of weight, at least one nose bleed a day and bad pain. I also developed severe and debilitating reactive airway symptoms that managed to make it so breathing was difficult and my oxygen sats dropped 6 points. The depression and emotional impact of the drug was also huge and life ruining.
All off this not part of a necessary drug regime.
Tim had to take time off work when it may not have been that necessary and friends have had to come in and care for me. We have had to hire someone and buy expensive off protocol drugs to get me through this. Tim was sure that I was not going to make it through the fall.
I am definitely not through it yet but one day off the drug the side effects have dropped by half. I can almost breath clearly, I stood up without fainting or tipping over. I ate real food and kept it down.
Tim and Femke are hovering in the sweetest way. I hope they can stop doing that. But to have their love and care is enormous. And I will never doubt my beautiful husbands dedication and love again.
I look at him and he glows with the most serene and beautiful light. He has barely had a minute to himself or a good nights sleep in weeks. I am overwhelmed. His generosity and kindness have made this almost worth it.
He put up the beautiful antique canopy bed in our bedroom. He painted the hallway and the second floor. He lovingly created another space for me to sleep in the big window in the living area. It meant he had to re purpose and construct platforms while Femke, Chris or Judy watched me. It is a beautiful, peaceful space where I can take part in the life of Sweethaven while still in bed.
 |
| Tim on the Mount Park just behind Sweethaven. 2014. |
Femke pulled out my needle bag and handed me wool. It was very hard to coordinate myself at first but it is now happening. I am using my hands today.
It looks like I might get a little reprieve where I will hopefully be able to finish documenting my work and try to make some new work. All the plans are there. The material is there. And so is a little bit of energy.
Time for all the crap to get shoveled out of here and scrapped off my shoe to make way for decent people and experiences. I have learned so much this fall. Lots of it not happy. Some of it shockingly ugly. But lots of beauty. There is clearly no more time to follow any other agenda but the one Tim and I define. He is with me for six months if we are lucky enough to have six months. If not... we will make other plans.
I am deeply in love with the man I chose to spend my life with and raise a family with and start to grow old with. Even though it has been 33 years. It is better right now than it has ever been because of the deepest connection possible. He is a truth teller, has nothing selfish or shallow about him and he lives with integrity every single day. I could never measure up but I will seriously try.
Right now I am hungry. For the first time in weeks.
Wednesday, September 17, 2014
Direction
There is a consequence to making a decision to work with and surround yourself with people who are differently directed or less skilled. Sometimes the consequence is regression of your own art practice. It can also result in having to reclaim your path and contacts. Or find you are surrounded by copy artists, Sunday painters or posers.
I made a decision to change direction a few years ago. It happened at the peak of mid-career success. I quit organizations, stopped teaching, let memberships lapse and didn't follow up on extraordinary invitations that were coming in internationally.
At that point I was winning International Awards like the one from Hand Weaver's Guild of America for Innovative Practice, being published in Textile Forum Austrailia and in the European Textile Network Magazine. I was also guest speaking and teaching with an Invitation to teach at the National Taiwan Craft's Institute. There were other things like a life profile in the Column Left Atrium with the Canadian Medical Association, a documentary and invitations to show in New York, England, Holland and Hong Kong.
But I decided, perhaps out of fear, that I desperately needed a studio up North and to open a gallery.
It allowed me time. It allowed me a whole new perspective and some grounding time. It did not allow time for creative growth and eventually choked my creativity almost completely. I was surrounded by bad landscape painters, people who attend art events to get laid and used the nearby art school as a glorified summer camp or by artists who have dated prescribed practice and messages. Not all of course. There was meetings with Peter Von Theissenhausen, John Hall and Harold Klunder. Got to work with Claire Kudjundzic and Bill Horne, Carolyn Anders, Corey Hardeman and Paula Scott.
Hard lesson from all of this. In some ways the time spent in Wells was wasted and destructive on both a personal and professional level. Except I made friends and lived the intimate but invasive life of a small town. But professionally artistic life ground to a near halt. There may not be time now to reclaim it.
I can only blame myself for what happened.
I made a decision to change direction a few years ago. It happened at the peak of mid-career success. I quit organizations, stopped teaching, let memberships lapse and didn't follow up on extraordinary invitations that were coming in internationally.
At that point I was winning International Awards like the one from Hand Weaver's Guild of America for Innovative Practice, being published in Textile Forum Austrailia and in the European Textile Network Magazine. I was also guest speaking and teaching with an Invitation to teach at the National Taiwan Craft's Institute. There were other things like a life profile in the Column Left Atrium with the Canadian Medical Association, a documentary and invitations to show in New York, England, Holland and Hong Kong.
But I decided, perhaps out of fear, that I desperately needed a studio up North and to open a gallery.
It allowed me time. It allowed me a whole new perspective and some grounding time. It did not allow time for creative growth and eventually choked my creativity almost completely. I was surrounded by bad landscape painters, people who attend art events to get laid and used the nearby art school as a glorified summer camp or by artists who have dated prescribed practice and messages. Not all of course. There was meetings with Peter Von Theissenhausen, John Hall and Harold Klunder. Got to work with Claire Kudjundzic and Bill Horne, Carolyn Anders, Corey Hardeman and Paula Scott.
Hard lesson from all of this. In some ways the time spent in Wells was wasted and destructive on both a personal and professional level. Except I made friends and lived the intimate but invasive life of a small town. But professionally artistic life ground to a near halt. There may not be time now to reclaim it.
I can only blame myself for what happened.
Monday, September 15, 2014
A Picture of Superman
Awoke to blueberry smoothie and fresh made tea. Hydration.
Sunday, September 14, 2014
Christine
Christine came and stayed and cooked, held me, made me laugh
played with Tim, read to me, dragged me to the beach and did everything magic she does.
Our house rings with laughter and love.
This kinda sums up who we are.
My Christine. Always.
played with Tim, read to me, dragged me to the beach and did everything magic she does.
Our house rings with laughter and love.
This kinda sums up who we are.
My Christine. Always.
.jpg) |
| Christine Basque and Patricia Chauncey. Sept. 2014 |
Friday, September 12, 2014
Long Term Illness Sucks
i have no enthusiasmI have now been dealing with the same slow growing cancer formally for 12 years. I was in my forties. I have had no success with the series of chemos, radiation and surgeries. Some of those treatments have left me sicker and close to death. I have pulled back from death at least 5 times.
It is normal for me to leap back into a life that works for awhile and diminishes again.
Each time less of me comes back.
The cancer has started a whole new phase. This time fierce. Nausea so bad I can't sit up or walk around easily. A skull bone that aches all the time. Legs and balance that no longer work reliably
Pain. In my chest and under my arm. In old radiation on two places in my spine. Breathing problems. Vomiting that is hard to control. Sleeplessness and sweating.
I am lucky and know that. But there comes a point where there is now very little value I offer the world. Where the motivation to get up is leaving and I just have the energy to stare at a wall. I have gone from lookin forward to visits to avoiding many of them because I find social enery the hardest to manufacture.
The cancer clinic experience has changed. I am still in Ambulatory Care. But this is now done with a walker and an assistant. It would be impossible for me to go to an appointment on my own.
People no longer say how well I look. They are startled. Black and green circles and a palor startle my friends. Their eyes well up all the time. I talk on the phone and I hear them react to my voice weakness and breathlessness.
I was not diagnosed at Stage 1. I was diagnosed at Stage 3. Now diagnosed as palliative Stage 4. For 2 years.
My patience is short. Very little left for fools who push alternate diagnosis and faith healing on me. Positive thinkers who are convinced I somehow created my own genetic malady by feeling and reacting to stress in the wrong way. Who attempt to silence me with stupid mantras and magical thinking. Who abandon me because I am cranky.
My attempt to get up and take part in life takes more than most understand. It is my belief that people suffer silently not only to protect others from pain but because they have given up trying to use their own voices. They are tired of trying to be allowed to express what they need and want. Of having personalities and roles imposed on them. Sick people don't say things like that. You are a saint. I am not a saint. You are so brave. I am terrified. You expect too much. Seriously. I am expected to wait for hours for appointments. Sit in dirty clothes. Wait for food when an empty stomach burns and burns. Stand on buses. Be stood up at the simple drop of a hat.
I am a grouch. I do not have my regular instant smile and trust. My attitude is the best I can do. I am not needing to suffer...
I didn't manufacture a single fucking thing except feigned happiness and excitment at life. The things that make me truly happy are nearly all gone.
I am no longer thankful for another day. Just grateful for the life I was enabled to have after diagnosis. And so glad about the life and love I had before all of this. It was full. It was rich. And I loved it. Right now I don't because long term illness without hope just sucks.
It is normal for me to leap back into a life that works for awhile and diminishes again.
Each time less of me comes back.
The cancer has started a whole new phase. This time fierce. Nausea so bad I can't sit up or walk around easily. A skull bone that aches all the time. Legs and balance that no longer work reliably
Pain. In my chest and under my arm. In old radiation on two places in my spine. Breathing problems. Vomiting that is hard to control. Sleeplessness and sweating.
I am lucky and know that. But there comes a point where there is now very little value I offer the world. Where the motivation to get up is leaving and I just have the energy to stare at a wall. I have gone from lookin forward to visits to avoiding many of them because I find social enery the hardest to manufacture.
The cancer clinic experience has changed. I am still in Ambulatory Care. But this is now done with a walker and an assistant. It would be impossible for me to go to an appointment on my own.
People no longer say how well I look. They are startled. Black and green circles and a palor startle my friends. Their eyes well up all the time. I talk on the phone and I hear them react to my voice weakness and breathlessness.
I was not diagnosed at Stage 1. I was diagnosed at Stage 3. Now diagnosed as palliative Stage 4. For 2 years.
My patience is short. Very little left for fools who push alternate diagnosis and faith healing on me. Positive thinkers who are convinced I somehow created my own genetic malady by feeling and reacting to stress in the wrong way. Who attempt to silence me with stupid mantras and magical thinking. Who abandon me because I am cranky.
My attempt to get up and take part in life takes more than most understand. It is my belief that people suffer silently not only to protect others from pain but because they have given up trying to use their own voices. They are tired of trying to be allowed to express what they need and want. Of having personalities and roles imposed on them. Sick people don't say things like that. You are a saint. I am not a saint. You are so brave. I am terrified. You expect too much. Seriously. I am expected to wait for hours for appointments. Sit in dirty clothes. Wait for food when an empty stomach burns and burns. Stand on buses. Be stood up at the simple drop of a hat.
I am a grouch. I do not have my regular instant smile and trust. My attitude is the best I can do. I am not needing to suffer...
I didn't manufacture a single fucking thing except feigned happiness and excitment at life. The things that make me truly happy are nearly all gone.
I am no longer thankful for another day. Just grateful for the life I was enabled to have after diagnosis. And so glad about the life and love I had before all of this. It was full. It was rich. And I loved it. Right now I don't because long term illness without hope just sucks.
Thursday, September 11, 2014
Navigating Through
I have been invited more than three times to show in a gallery and the possibility of doing so causes me distress because I will be required to cross over the personal with the professional.
The personal is very unpleasant. The professional is important only in that the invitation is from someone who has been a dedicated follower and advocate of my work for many years.
The personal requires a super human effort to be civilized. Even sort of civilized. Even sort of human. It is hugely upsetting. It involves the ridiculous unnecessary drama resulting from a situation that was heart breaking to me.
This is going to require thought. The person who invited me has asked repeatedly for a few years.
He collects my work. His board of directors include two people who have hurt me. One very intentionally through the theft of ideas and personal betrayal and one without personal knowledge and as a result of manipulation by another.
The whole idea of the gallery looms before me and makes me feel sickened. I have even avoided the community at all costs.
How do other people address dilemmas like this? Where does there capacity to ignore trauma and deep personal insult come from?
I am an honest person who has a difficult time hiding feelings. My feelings in this case are raw and new. I feel invaded on many sides by a personal experience manipulated by another that has left me with enormous self doubt, self consciousness and fear. The selfishness of his actions has invaded two communities that were important to me. I no longer feel comfortable in either.
He had almost no recent successful connection to the creative community before he connected with me. Stepped over me. Carved a swath through my professional life. To say nothing of the impact his selfishness had on me personally at a time I could not protect myself from any of this.
In more normal times this would be a small obstacle. I could muster my own personal shield. But everything is more significant when at my most vulnerable. Life and Death vulnerable.
But my friend and follower wants to show my work in a beautiful gallery out of caring and admiration. He asked again last night. Last week. The week before. Last month.
I just sit here not unsure of his commitment to my work but in a full terror of showing there.
I told him that I will try my best and that I have other obligations I am not meeting. and the truth is I will try my best. I told him my agent will organize it with him. Hopefully the show happens posthumously. Easier that way.
The personal is very unpleasant. The professional is important only in that the invitation is from someone who has been a dedicated follower and advocate of my work for many years.
The personal requires a super human effort to be civilized. Even sort of civilized. Even sort of human. It is hugely upsetting. It involves the ridiculous unnecessary drama resulting from a situation that was heart breaking to me.
This is going to require thought. The person who invited me has asked repeatedly for a few years.
He collects my work. His board of directors include two people who have hurt me. One very intentionally through the theft of ideas and personal betrayal and one without personal knowledge and as a result of manipulation by another.
The whole idea of the gallery looms before me and makes me feel sickened. I have even avoided the community at all costs.
How do other people address dilemmas like this? Where does there capacity to ignore trauma and deep personal insult come from?
 |
| My work from the Wonderland show at Numen Gallery. |
I am an honest person who has a difficult time hiding feelings. My feelings in this case are raw and new. I feel invaded on many sides by a personal experience manipulated by another that has left me with enormous self doubt, self consciousness and fear. The selfishness of his actions has invaded two communities that were important to me. I no longer feel comfortable in either.
He had almost no recent successful connection to the creative community before he connected with me. Stepped over me. Carved a swath through my professional life. To say nothing of the impact his selfishness had on me personally at a time I could not protect myself from any of this.
In more normal times this would be a small obstacle. I could muster my own personal shield. But everything is more significant when at my most vulnerable. Life and Death vulnerable.
But my friend and follower wants to show my work in a beautiful gallery out of caring and admiration. He asked again last night. Last week. The week before. Last month.
I just sit here not unsure of his commitment to my work but in a full terror of showing there.
I told him that I will try my best and that I have other obligations I am not meeting. and the truth is I will try my best. I told him my agent will organize it with him. Hopefully the show happens posthumously. Easier that way.
Piano Man
an amazing man. Such a nice way to wake up. He stays at Sweethaven when giving concerts on Mayne.
Cozy, Cuddled and Loved.
The artist Judi Porter just gifted me a beautiful quilt that has pictures of my life all over it.
I made some fabric for her daughter Amanda's wedding last summer. I had no expectation at all that I would be given something as heart warming and beautiful as this wonderful quilt.
It will serve me very well. No one has been able to get me out from under it today. Or in the near future.
I am so deeply touched. Couldn't get my eyes dry for at least an hour this morning.
So loving and delightful. And from dear friends. Judi and Amanda. I love you!
Judi Porter's Quilt. 2014
I made some fabric for her daughter Amanda's wedding last summer. I had no expectation at all that I would be given something as heart warming and beautiful as this wonderful quilt.
It will serve me very well. No one has been able to get me out from under it today. Or in the near future.
I am so deeply touched. Couldn't get my eyes dry for at least an hour this morning.
So loving and delightful. And from dear friends. Judi and Amanda. I love you!
Judi Porter's Quilt. 2014
Monday, September 8, 2014
C.B.C. Radio
Canadian Broadcasting Corporation, our state supported public radio has experienced massive lay-offs and letting go exceptional journalists, writers and researchers.
But something has happened this afternoon. The words "Bad Shit" are being sent out over the radio waves.
We haven't quite figured out if it is simply a stutter or a political action. More than 15 minutes of it so far.We are laughing so hard. We have had enough of the austerity programs in Canada . It is time for some extreme action to straighten out the mess that is being made of each and every public service.
We used to have live announcers who were delightful. Now there are pre-recorded loops. Now we just have "Bad Shit"!
That's it!
But something has happened this afternoon. The words "Bad Shit" are being sent out over the radio waves.
We haven't quite figured out if it is simply a stutter or a political action. More than 15 minutes of it so far.We are laughing so hard. We have had enough of the austerity programs in Canada . It is time for some extreme action to straighten out the mess that is being made of each and every public service.
We used to have live announcers who were delightful. Now there are pre-recorded loops. Now we just have "Bad Shit"!
That's it!
Saturday, September 6, 2014
Wait
Wait.
Each day is different.
Today was happy.
Tim is now partying with his cronies from work;
He is saying goodbye until I do whatever I will do.
Femke is sleeping on her couch and I am trying to get upstairs to a real bed and draw.
There is a little tiny frog who calls whenever I cough. Very funny. He sounds like a tubercular ward.
Perfect little cup mushrooms. Places for tiny frogs to bathe!
Each day is different.
Today was happy.
Tim is now partying with his cronies from work;
He is saying goodbye until I do whatever I will do.
Femke is sleeping on her couch and I am trying to get upstairs to a real bed and draw.
There is a little tiny frog who calls whenever I cough. Very funny. He sounds like a tubercular ward.
Wednesday, September 3, 2014
Break Out
This morning was the same disaster as every morning has been for the last few weeks and then I made a decision. I am doing something today if it kills me. It nearly did but something happened.
I told Femke that we were leaving Mayne Island for the day and she looked at me a little horrified because she saw me struggling for air and to get up. After a bathless week I stood up and climbed the stairs and got clean in the most painful shower I can remember. But clean is clean. I couldn't wash my hair or stand there long enough to have her do it. I climbed from shower straight back to bed and shivered. And decided to push past the pain.
We grabbed the ferry schedule and got dressed quickly. Femke washed my feet. It was a loving, loving act done in her gracious casual way. She was unsure if I could do it. But I did it. Not quietly.
Or elegantly.
We grabbed my drugs, my shoes, a little food and coffee and jumped in the car with the same hoopla as everything had taken this morning. The ferry had room and we were on before I was fully concious, Before Femke had her coffee. We watched the sea. Beautiful sea. and as quick as departing the car landed in Victoria.
First stop Chinatown and an amazing noodle soup in Fan Tan Alley. I drugged myself again and started with purchasing a beautiful flowered cotton kimono. Cool and soft colours. The rain was seriously pelting down. And off again. Hit the most amazing Capital Iron and found self threading needles!!!! Managed even with the shaky hands. Found fuchsia boots. Found a pattern for a poncho to ward off the chill this fall. And went to a clothing store and found some new duds. Including a Long black crepe tunic, A flowy black sweater jacket and new cotton tights and mariner pants. The weight loss means many things are too big. Femke bought a beautiful printed scarf.
Farm market next for huge bags of corn, basil, cukes, green beans and purple cauliflower.
We sat by the pretty sea and ate our supper of chilied muscles and calamari. A creamy seafood chowder. A virgin drink worked out fine. Baby tomatoes stuffed each mussel. Fresh lovely lime. All while watching the storm on the water. A woman came over and said, "You have cancer and it isn't going well. I know. I have breast cancer. There are these great ginger candies in Chinatown that gets me through what you are going through." I was stunned and wondered if this disease has now printed a warning on my forehead. She said she recognized how I was walking and the way I was holding my shoulders and protecting my head. We looked at each other in full delight! And both said,"It is day by day!". Her husband was thrilled with her and he reminded me of Tim and the enthusiasm he shows for all this effort.
Went back and waited for the ferry. Chewed gummy bears. And there were rainbows! Double rainbows! And I fell asleep in the car while Femke climbed out and charmed half the wonderful men on Mayne Island. The sunset was lighting up the water. Red sky at night sailor's delight.
And then we were home to Sweethaven. The ducks had put themselves to bed. And then we did.
After watching "My Idiot Brother".
I did it. And will do it again. I can be home and sick and in pain or take part in life while it remains possible. One works better than the other.
This was a real day!
I told Femke that we were leaving Mayne Island for the day and she looked at me a little horrified because she saw me struggling for air and to get up. After a bathless week I stood up and climbed the stairs and got clean in the most painful shower I can remember. But clean is clean. I couldn't wash my hair or stand there long enough to have her do it. I climbed from shower straight back to bed and shivered. And decided to push past the pain.
We grabbed the ferry schedule and got dressed quickly. Femke washed my feet. It was a loving, loving act done in her gracious casual way. She was unsure if I could do it. But I did it. Not quietly.
Or elegantly.
We grabbed my drugs, my shoes, a little food and coffee and jumped in the car with the same hoopla as everything had taken this morning. The ferry had room and we were on before I was fully concious, Before Femke had her coffee. We watched the sea. Beautiful sea. and as quick as departing the car landed in Victoria.
First stop Chinatown and an amazing noodle soup in Fan Tan Alley. I drugged myself again and started with purchasing a beautiful flowered cotton kimono. Cool and soft colours. The rain was seriously pelting down. And off again. Hit the most amazing Capital Iron and found self threading needles!!!! Managed even with the shaky hands. Found fuchsia boots. Found a pattern for a poncho to ward off the chill this fall. And went to a clothing store and found some new duds. Including a Long black crepe tunic, A flowy black sweater jacket and new cotton tights and mariner pants. The weight loss means many things are too big. Femke bought a beautiful printed scarf.
Farm market next for huge bags of corn, basil, cukes, green beans and purple cauliflower.
We sat by the pretty sea and ate our supper of chilied muscles and calamari. A creamy seafood chowder. A virgin drink worked out fine. Baby tomatoes stuffed each mussel. Fresh lovely lime. All while watching the storm on the water. A woman came over and said, "You have cancer and it isn't going well. I know. I have breast cancer. There are these great ginger candies in Chinatown that gets me through what you are going through." I was stunned and wondered if this disease has now printed a warning on my forehead. She said she recognized how I was walking and the way I was holding my shoulders and protecting my head. We looked at each other in full delight! And both said,"It is day by day!". Her husband was thrilled with her and he reminded me of Tim and the enthusiasm he shows for all this effort.
Went back and waited for the ferry. Chewed gummy bears. And there were rainbows! Double rainbows! And I fell asleep in the car while Femke climbed out and charmed half the wonderful men on Mayne Island. The sunset was lighting up the water. Red sky at night sailor's delight.
And then we were home to Sweethaven. The ducks had put themselves to bed. And then we did.
After watching "My Idiot Brother".
I did it. And will do it again. I can be home and sick and in pain or take part in life while it remains possible. One works better than the other.
This was a real day!
Sunday, August 31, 2014
Here and Now
Throughout the night different people checked to see if I was okay.
Jim covered me up about 3. Femke stayed through the night and helped me get up
and drink water and just sat and waited for the pain to subside'
Emily called out for me in the night. She sang and danced and kissed me alright all day.
Hils came and sat and nursed her tiny baby.
Tim for the first time in weeks collapsed and slept so deep nothing can wake him because he is not the only one here. The only one vigilant and caring. The only one responsible. He leaves work in 5 days.
3 times I just counted to see if it could be conquered. The pain layers were so deep it was like blankets.
Which got too hot and eventually had to be peeled away. Or until I could catch my breathing and stop
the tightening anxiety from the relentlessness of this pain. And I did. I know too much about my workings now that I can see the diagram of a human body and identify where it hurts. Defined by little dotted lines of certainty. And sometimes it abruptly stops. Completely. I do not move then.
Last night just as the sun was starting to leave us they packed me up and drove me to the beach. I was deliriously happy. SO perfect watching Jim and Emily paddle in the cold water. Listening to Hil and Jim call back and forth in Glaswegian lilting conversation. Tim smiling. Met neighbours. A carpenter named mark and Derek from the neighbouring Fire 'Hall. And we left. Me being lifted from my chair not only by Tim but by Jim, helped up the hill by two men and into the car.
We got back to Sweethaven to soft rain and frog song. We ate a supper almost completely provided from my garden efforts. Pasta, tomatoes, basil and garlic made into a sweet simple meal. Femke came and the wine came out and so did all she brings like laughter and light. And we were all so happy. I was covered up and drugged and fed and watered. One sip of this delicious and rich Bordeaux was all I was allowed but it was one sip from the crackling warmth of the room.
And Emily treated us with her version of Highland Dancing. She was astounded when she saw them. A herd of Fallow deer in full antler. "Oh Mama! Auntie Pat! The reindeer came!". She sat and felt the magic of Sweethaven in the last light. We all did.
I don't know if this is what it is now. But the beauty of it all still comes. Even in short gasps.
I am not alone. I am still here. I am fully in love with my life.
Today everyone wants to thread a needle or ten so I can try to sew despite this tremor taking over my movement. I can try can't I? And if that doesn't work there are still reindeer, soft rain and frog song.
Jim covered me up about 3. Femke stayed through the night and helped me get up
and drink water and just sat and waited for the pain to subside'
Emily called out for me in the night. She sang and danced and kissed me alright all day.
Hils came and sat and nursed her tiny baby.
Tim for the first time in weeks collapsed and slept so deep nothing can wake him because he is not the only one here. The only one vigilant and caring. The only one responsible. He leaves work in 5 days.
3 times I just counted to see if it could be conquered. The pain layers were so deep it was like blankets.
Which got too hot and eventually had to be peeled away. Or until I could catch my breathing and stop
the tightening anxiety from the relentlessness of this pain. And I did. I know too much about my workings now that I can see the diagram of a human body and identify where it hurts. Defined by little dotted lines of certainty. And sometimes it abruptly stops. Completely. I do not move then.
Last night just as the sun was starting to leave us they packed me up and drove me to the beach. I was deliriously happy. SO perfect watching Jim and Emily paddle in the cold water. Listening to Hil and Jim call back and forth in Glaswegian lilting conversation. Tim smiling. Met neighbours. A carpenter named mark and Derek from the neighbouring Fire 'Hall. And we left. Me being lifted from my chair not only by Tim but by Jim, helped up the hill by two men and into the car.
We got back to Sweethaven to soft rain and frog song. We ate a supper almost completely provided from my garden efforts. Pasta, tomatoes, basil and garlic made into a sweet simple meal. Femke came and the wine came out and so did all she brings like laughter and light. And we were all so happy. I was covered up and drugged and fed and watered. One sip of this delicious and rich Bordeaux was all I was allowed but it was one sip from the crackling warmth of the room.
And Emily treated us with her version of Highland Dancing. She was astounded when she saw them. A herd of Fallow deer in full antler. "Oh Mama! Auntie Pat! The reindeer came!". She sat and felt the magic of Sweethaven in the last light. We all did.
I don't know if this is what it is now. But the beauty of it all still comes. Even in short gasps.
I am not alone. I am still here. I am fully in love with my life.
Today everyone wants to thread a needle or ten so I can try to sew despite this tremor taking over my movement. I can try can't I? And if that doesn't work there are still reindeer, soft rain and frog song.
 |
| The beach we were on. Bennet Bay, Mayne Island |
Friday, August 29, 2014
Getting Interesting
Today will be interesting to me.
Neuromuscular Medicine is far more concrete and understandable than many of the mysteries I experience. They poke a needle or an electrical impulse in the body reacts . You can see it. A biopsy is done and you know tissue is being gone over with a fine tooth comb.
It brought up all sorts of memories of playing with puppets and dancing with strings. Got up and started a puppet. Have some old ones I will paint chalky white.
Neuromuscular Medicine is far more concrete and understandable than many of the mysteries I experience. They poke a needle or an electrical impulse in the body reacts . You can see it. A biopsy is done and you know tissue is being gone over with a fine tooth comb.
It brought up all sorts of memories of playing with puppets and dancing with strings. Got up and started a puppet. Have some old ones I will paint chalky white.
Thursday, August 28, 2014
Again
I have to do it again. It was gruelling and painful beyond belief and I have to do it again.
This week and last have been a lesson in coping for me.
Loss is terrible.
I wish I was a stronger person. But I guess this is the best I can do.
So many people are here for me. And those who said they would be here but didn't show up
will simply be released to gravity. They are flimsy and empty bags of hot air.
Big, big bless to the best. What would have happened without you?
Tim leaves work in a few more days. He is determined to get me up and on a plane.
He is so tired. There are support groups for partners and caregivers. He won't go.
He needs time off and play. He said there will have lots of time to do that after.
Which is sad because no one has eyes like Tim when he is happy. Brilliant, big blue eyes with their own constellation.
This week and last have been a lesson in coping for me.
Loss is terrible.
I wish I was a stronger person. But I guess this is the best I can do.
So many people are here for me. And those who said they would be here but didn't show up
will simply be released to gravity. They are flimsy and empty bags of hot air.
Big, big bless to the best. What would have happened without you?
Tim leaves work in a few more days. He is determined to get me up and on a plane.
He is so tired. There are support groups for partners and caregivers. He won't go.
He needs time off and play. He said there will have lots of time to do that after.
Which is sad because no one has eyes like Tim when he is happy. Brilliant, big blue eyes with their own constellation.
Only One More Hour.
Components of time is one way to measure your life. Parcelling out blocks of time. Counting times an action happens. Appointments. Treatments.
Today's test will take a little more than one painful hour.
I am reminded of the day I was sure I wasn't going to make it.
It was the day my breast split in half from an infection that nearly killed me. Special nurses 3 times a day for months. I had a choice. I decided I was going to live.
Dr. Michael put his face right up to mine and said,"You can consider this a tragedy, no one would blame you. Or you can take one more breath and another one after that. Pretty soon you will be up again and walking. One little step at a time. Pretty soon it will be a thousand steps and you will marvel at your strength.
I have taken hundreds of thousands of steps since then. Which only means I still have to choose to keep walking and breathing. I never did find that pride but I am not dead yet. Although many strong friends are.
I will live until I die and I will do it with all the truth I can. Hopefully with enough forgiveness and love. No one said it was going to be fair.
Today's test will take a little more than one painful hour.
I am reminded of the day I was sure I wasn't going to make it.
It was the day my breast split in half from an infection that nearly killed me. Special nurses 3 times a day for months. I had a choice. I decided I was going to live.
Dr. Michael put his face right up to mine and said,"You can consider this a tragedy, no one would blame you. Or you can take one more breath and another one after that. Pretty soon you will be up again and walking. One little step at a time. Pretty soon it will be a thousand steps and you will marvel at your strength.
I have taken hundreds of thousands of steps since then. Which only means I still have to choose to keep walking and breathing. I never did find that pride but I am not dead yet. Although many strong friends are.
I will live until I die and I will do it with all the truth I can. Hopefully with enough forgiveness and love. No one said it was going to be fair.
Wednesday, August 27, 2014
Tests
So sick of tests. Even sicker of the results.
Tomorrow I get dragged through a small tube backwards. Someone will be pounding it with hammers. I will not be able to panic or move at all. Lots of sedation is required and pain killers.
But the process is fascinating.
Tomorrow I start further evaluations and increased pain management.
Femke is coming to support Tim and Hilary and Jim will be there.
Thankful for true friends who only make it better and not harder.
Thankful for the pretty flowers from my son Bren. Briggy came to sit with me.
And they really, really helped. My heart is so glad for their kindness.
For the first time since early childhood I could not thread or hold a needle.
I can see the hole and see the thread but I simply can't stop the shaking long enough to accomplish the task. So what am I now? A new image beside bump on the bed is required. I will get bigger needles and try again. And buy a hundred needles for Femke and Hilary to thread.
Little Emily interrupted her class at day care because she had an announcement. She told them she would be at Sweethaven this weekend if they needed her. She is going to be with her Auntie Pat! Beyond sweet. Little red headed monkey who I love. I know her. She will climb under my covers and read me a good book. And pat my face. It is funny how kids adjust. I stand up. They look for my cane or walker. They fluff my pillows and just climb in. They often make sure I have a stuffy to hug. They demand things on my behalf. For some reason they all just understand what I need. I have watched it with the Elf and Jackson. And Emily.
And they walk into the house and find the stuff they had last visit. Set it up and settle in right after arriving.
Even the babies know something is different. They calm in my presence and snug in and fall fast asleep in the warm nest I live in. I have experienced that with Sloan, Brielle, Aurora and Mila. It is not just that they snug in it is that they sink into who I am.
One regret is that I didn't have at least one other child. But I have had the opportunity to be with so many kids. The ones who have grown up and called me Auntie still come and snuggle in. Now, though, they bring their little babies with them. What an incredible honour! I know at least a couple will remember me.
Tomorrow I get dragged through a small tube backwards. Someone will be pounding it with hammers. I will not be able to panic or move at all. Lots of sedation is required and pain killers.
But the process is fascinating.
Tomorrow I start further evaluations and increased pain management.
Femke is coming to support Tim and Hilary and Jim will be there.
Thankful for true friends who only make it better and not harder.
Thankful for the pretty flowers from my son Bren. Briggy came to sit with me.
And they really, really helped. My heart is so glad for their kindness.
For the first time since early childhood I could not thread or hold a needle.
I can see the hole and see the thread but I simply can't stop the shaking long enough to accomplish the task. So what am I now? A new image beside bump on the bed is required. I will get bigger needles and try again. And buy a hundred needles for Femke and Hilary to thread.
Little Emily interrupted her class at day care because she had an announcement. She told them she would be at Sweethaven this weekend if they needed her. She is going to be with her Auntie Pat! Beyond sweet. Little red headed monkey who I love. I know her. She will climb under my covers and read me a good book. And pat my face. It is funny how kids adjust. I stand up. They look for my cane or walker. They fluff my pillows and just climb in. They often make sure I have a stuffy to hug. They demand things on my behalf. For some reason they all just understand what I need. I have watched it with the Elf and Jackson. And Emily.
And they walk into the house and find the stuff they had last visit. Set it up and settle in right after arriving.
Even the babies know something is different. They calm in my presence and snug in and fall fast asleep in the warm nest I live in. I have experienced that with Sloan, Brielle, Aurora and Mila. It is not just that they snug in it is that they sink into who I am.
One regret is that I didn't have at least one other child. But I have had the opportunity to be with so many kids. The ones who have grown up and called me Auntie still come and snuggle in. Now, though, they bring their little babies with them. What an incredible honour! I know at least a couple will remember me.
Tuesday, August 26, 2014
Big Loss
Last night I found out that one of the most important people in my life died.
It was her time to die. She had enough of her life and illness.
I will always miss her. Today is terrible. Too much loss in a difficult time.
She was an amazing artist and creative being.
I met her when I was eleven years old.
She mentored and nurtured me at a time in my youth where I was sad and not nurtured.
She knew what was happening for me in my home and intervened.
She allowed me to move into her home and helped make sure I was launched. Made
sure I was fed. Sometimes awful things like Tiger's Milk.
Made sure I felt respected and cared for.
Taught me so many things. Like doing a cartwheel. Laughter at stuff that was awful and painful.
We sang naughty songs, talked politics, drew pictures and drank wine.
Some of us are lucky enough to have more than one mother. She was mine.
I adored her sophisticated, elegant artistic being. Her ability to create music and art.
The first time I met her she was in a black turtle neck and tight black pants. She had a long cigarette holder and perched on the arms of chairs. Men were devastated by her.
She read me poetry and bits of stories and introduced me to Canadian authors and artists.
She would grill me on current events and have lively discussions despite my ignorance and innocence.
She put up with me when I was intolerable.
When my beloved grandfather died. She found me by driving street by street. She told me of his death and made sure I had the support to get through the loss of my most important loved one. She helped me organize his funeral. My own mother could barely move. She found a minister to do his life ceremony. He was a communist, godless and extremely poor.
Her daughter remains my closest friend to this day.
I am so glad she was happy at the end of her life. That her friend's cared for her. That she saw the ocean and beauty and held true to herself. She was a Mom to me. And I can no longer thank her.
It was her time to die. She had enough of her life and illness.
I will always miss her. Today is terrible. Too much loss in a difficult time.
She was an amazing artist and creative being.
I met her when I was eleven years old.
She mentored and nurtured me at a time in my youth where I was sad and not nurtured.
She knew what was happening for me in my home and intervened.
She allowed me to move into her home and helped make sure I was launched. Made
sure I was fed. Sometimes awful things like Tiger's Milk.
Made sure I felt respected and cared for.
Taught me so many things. Like doing a cartwheel. Laughter at stuff that was awful and painful.
We sang naughty songs, talked politics, drew pictures and drank wine.
Some of us are lucky enough to have more than one mother. She was mine.
I adored her sophisticated, elegant artistic being. Her ability to create music and art.
The first time I met her she was in a black turtle neck and tight black pants. She had a long cigarette holder and perched on the arms of chairs. Men were devastated by her.
She read me poetry and bits of stories and introduced me to Canadian authors and artists.
She would grill me on current events and have lively discussions despite my ignorance and innocence.
She put up with me when I was intolerable.
When my beloved grandfather died. She found me by driving street by street. She told me of his death and made sure I had the support to get through the loss of my most important loved one. She helped me organize his funeral. My own mother could barely move. She found a minister to do his life ceremony. He was a communist, godless and extremely poor.
Her daughter remains my closest friend to this day.
I am so glad she was happy at the end of her life. That her friend's cared for her. That she saw the ocean and beauty and held true to herself. She was a Mom to me. And I can no longer thank her.
Monday, August 25, 2014
Hope List
There are things I still hope for. I looked at this beautiful wrapped white embroidery thread Celine brought me back from her last journey and gave me for my birthday. White thread always represents hope.
Hope keeps eluding me now. Something I am too tired for.
The life ceremony for Jessica Karen was today. She died days after Karl did. They burned notes for her in a fire. Memories and prayers and thoughts. Her Pire. Her Ghat. She did not survive inadequate medical treatment and the support system she was left with. She was mentally ill and withered away until her heart stopped. 36 years old. She was a magical thinker and a spiritual person who thought her thoughts would manifest themselves into the energies to change her terrible reality.
Karl died as well. He was a pragmatist who was a left-winger. He existed in the real that atheists do. Not always happy or ever magical. He had an amazing support system. He was loved until the end. His ceremony was a wake of sorts. Lots of music and memories.
Two deaths in two weeks. Both touched my life in a profound way.
The anniversary of Kate's death is in a few days. She was a magical thinker who refused cancer treatment until the end. She did everything alternatively and naturally and it didn't work. She invoked the spirits and they didn't come. Morphine was not enough. Her daughter is just entering high school. I held Kate's mother during the burial and she panicked and we had to leave. Kate's drug addled and magical husband dressed her in an expensive sari and draped her in jewels. She was Macedonian and English after all. The children sang and played Irish music.
I thought about white cloth today. I once met a good looking man one day and asked questions about his white turban. I didn't know it meant he was a widower. He educated me about the colours of turbans and style and traditions. He was a teacher. His wife died of breast cancer and when he asked me what I had. I said the same. He cried and said I needed to be very brave from then on because it would be awful. And mostly it hasn't been. Not so great right now but she only had a few years and I have had more than 10.
I still need some hope to placate those around me. To stop them from crawling all over me in terror or abandoning me completely. I'm not really sure how to handle either. Or the grief of those whose loved ones have already died. I do not have an easy or a fluid statement that satisfies the spiritual ones without them mocking my reality. Atheists are not offered the same respect while they are dying. People who chose science as their answer are thought of as mistaken in our new Dark Age. There is the way. Fundamentalist and perfectionist. No sloppy chaos for those who are believers. No conclusions. No reality.
I had to remove a DNR. Do not resuscitate. For a little while longer. I nearly choked to death the other night. Too quick and easy for me.
Today I was well enough to get out of bed for awhile and Tim helped me into the car. We went and slept on the beach for nearly two hours. Soft cool ocean breeze. Summer heat. It was perfect comfort. Tomorrow I am back in the hospital. Or in my Vancouver bed.
I am here and they are not. For no reason at all. I can never say I understand. I wasn't supposed to survive my birth. But I did.
Hope keeps eluding me now. Something I am too tired for.
The life ceremony for Jessica Karen was today. She died days after Karl did. They burned notes for her in a fire. Memories and prayers and thoughts. Her Pire. Her Ghat. She did not survive inadequate medical treatment and the support system she was left with. She was mentally ill and withered away until her heart stopped. 36 years old. She was a magical thinker and a spiritual person who thought her thoughts would manifest themselves into the energies to change her terrible reality.
Karl died as well. He was a pragmatist who was a left-winger. He existed in the real that atheists do. Not always happy or ever magical. He had an amazing support system. He was loved until the end. His ceremony was a wake of sorts. Lots of music and memories.
Two deaths in two weeks. Both touched my life in a profound way.
The anniversary of Kate's death is in a few days. She was a magical thinker who refused cancer treatment until the end. She did everything alternatively and naturally and it didn't work. She invoked the spirits and they didn't come. Morphine was not enough. Her daughter is just entering high school. I held Kate's mother during the burial and she panicked and we had to leave. Kate's drug addled and magical husband dressed her in an expensive sari and draped her in jewels. She was Macedonian and English after all. The children sang and played Irish music.
I thought about white cloth today. I once met a good looking man one day and asked questions about his white turban. I didn't know it meant he was a widower. He educated me about the colours of turbans and style and traditions. He was a teacher. His wife died of breast cancer and when he asked me what I had. I said the same. He cried and said I needed to be very brave from then on because it would be awful. And mostly it hasn't been. Not so great right now but she only had a few years and I have had more than 10.
I still need some hope to placate those around me. To stop them from crawling all over me in terror or abandoning me completely. I'm not really sure how to handle either. Or the grief of those whose loved ones have already died. I do not have an easy or a fluid statement that satisfies the spiritual ones without them mocking my reality. Atheists are not offered the same respect while they are dying. People who chose science as their answer are thought of as mistaken in our new Dark Age. There is the way. Fundamentalist and perfectionist. No sloppy chaos for those who are believers. No conclusions. No reality.
I had to remove a DNR. Do not resuscitate. For a little while longer. I nearly choked to death the other night. Too quick and easy for me.
Today I was well enough to get out of bed for awhile and Tim helped me into the car. We went and slept on the beach for nearly two hours. Soft cool ocean breeze. Summer heat. It was perfect comfort. Tomorrow I am back in the hospital. Or in my Vancouver bed.
I am here and they are not. For no reason at all. I can never say I understand. I wasn't supposed to survive my birth. But I did.
Sunday, August 24, 2014
Hospital
Will be in the hospital on and off again next week.
Too sick to deal with much of anything else.
A secondary disease has been found in my system.
It is neuro-muscular. It may account for the pain and medication difficulties.
It also probably accounts for many of the complications that keep happening.
I just won't know what it is until Friday when the Neuro-muscular Specialist. Unless I get sicker.
All I know is that I am just too sick to sit up for long. That I vomited enough to lose almost 14 pounds in a little more than two weeks and that I wrestle with the pain most of the day.
My husband is exhausted. He has been vigilant to a fault. And loving.
Too sick to deal with much of anything else.
A secondary disease has been found in my system.
It is neuro-muscular. It may account for the pain and medication difficulties.
It also probably accounts for many of the complications that keep happening.
I just won't know what it is until Friday when the Neuro-muscular Specialist. Unless I get sicker.
All I know is that I am just too sick to sit up for long. That I vomited enough to lose almost 14 pounds in a little more than two weeks and that I wrestle with the pain most of the day.
My husband is exhausted. He has been vigilant to a fault. And loving.
Saturday, August 23, 2014
Saturday, August 16, 2014
Friday, August 15, 2014
Carl
Carl is gone.
My friend.
Taught me how to make spaghetti the right way.
Sprinkled with joy.
Made me see joy in the end of this life by just calling it life.
Best thing anyone ever said.
My friend.
Taught me how to make spaghetti the right way.
Sprinkled with joy.
Made me see joy in the end of this life by just calling it life.
Best thing anyone ever said.
Wednesday, August 13, 2014
Dreaming Weakness
I wake up in the morning. Not really morning for a few hours.
I get out of bed after planning. Remembering dreams if my pain is tolerable.
Dreams now are filled with my vulnerability.
So many have to do with endurance and trying to reach a destination.
I used to be so strong in my dreams. I could fly if there were obstacles.
It took no effort to be heroic.
Now it is different. I lose things. I am trapped inside places.
Witnessing someones great sorrow and I have no idea what to do.
I touch and there is a repulsed response.
My sleep is fit full. Sometimes there are more than one dream.
1. There is a baby dropped in my arms and it is almost porcelain.
Like fine Japanese porcelain that is opaque in the light. The baby has the whitest skin but no eyes.
It is so round and rolled up in a tight fetal position. I want to find someone else to care for it but I am burdened by it's weight. I sit and look at it and recoil but know I will hold it anyways. I have always been too responsible.
2. I am with Kyd in Lima, Peru. She has given me her horse to care for. There is a festival in the next town and I agree to bring it to her there. It must be perfectly groomed. I look and look and can't find either her feed or her curry comb. There are branches that look like they would work for a comb and when the first stroke hits her side blood seeps through her skin. I know I have to meet Kyd at Confession. I keep explaining to people that my mother is Catholic and not me.
3. My birth certificate is lost. I am allowed to get a travel card without it. I leave to a stupid destination that has a big box store and nothing else. The whole town is empty. So I open the door to go into the store and it closed down six months before. There is dust and a few papers and old boxes on the ground. I try to go home but the authorities at the border won't let me back into Canada. There is a hysterical little dog running everywhere. It is in terrible condition and no one will help it. I try to pick it up but it bites me. I drop it and it continues it's hysteria.
4. My father is across the river. It is filled with logs and I try to walk them like a log driver but the logs I choose are really just floating bark. My father is yelling at me. Saying his normal unkind things. " Get up you big baby!" And then he puts on his disgusted face and storms off into the forest. I can hear him but I can't see him. His tirade continues and I know it is hopeless.
All last night the dreams kept coming. None particularly profound or meaningful. None that hard to figure out.
5. I am with my Nanny. Irish for Granny. We are in Parc Frontinac in Montreal. There is a grotto with a Mary in it with flowing blue and white gowns. Her face is pretty. I try to pry the figurine out of the grotto
I have one dream that has been repeated over and over. It is kind. I dream I am standing in a vast prairie field. My hands are covered in prairie dust. I wipe them on my dress. There is a dusty mist and the sounds of the prairies. Grasshoppers, peregrines, wind in the grass. My dress and very long light blond hair are captured by the soft breeze. The dress is long with pin tucks and a full long skirt. It is a faded soft blue green cotton. "This is not my time". But I know I am my great grandmother's mother.
My name is Julia.
In truth I didn't know her name and got a family tree a few years ago. There she was. Not a dream at all. Her name was Julia.
Julia always comforts me. She died when my great grandmother was a little girl.
Is there such a thing as genetic dreaming? I have no memory of Old Gran telling me her name.
Maybe she did.
I get out of bed after planning. Remembering dreams if my pain is tolerable.
Dreams now are filled with my vulnerability.
So many have to do with endurance and trying to reach a destination.
I used to be so strong in my dreams. I could fly if there were obstacles.
It took no effort to be heroic.
Now it is different. I lose things. I am trapped inside places.
Witnessing someones great sorrow and I have no idea what to do.
I touch and there is a repulsed response.
My sleep is fit full. Sometimes there are more than one dream.
1. There is a baby dropped in my arms and it is almost porcelain.
Like fine Japanese porcelain that is opaque in the light. The baby has the whitest skin but no eyes.
It is so round and rolled up in a tight fetal position. I want to find someone else to care for it but I am burdened by it's weight. I sit and look at it and recoil but know I will hold it anyways. I have always been too responsible.
2. I am with Kyd in Lima, Peru. She has given me her horse to care for. There is a festival in the next town and I agree to bring it to her there. It must be perfectly groomed. I look and look and can't find either her feed or her curry comb. There are branches that look like they would work for a comb and when the first stroke hits her side blood seeps through her skin. I know I have to meet Kyd at Confession. I keep explaining to people that my mother is Catholic and not me.
3. My birth certificate is lost. I am allowed to get a travel card without it. I leave to a stupid destination that has a big box store and nothing else. The whole town is empty. So I open the door to go into the store and it closed down six months before. There is dust and a few papers and old boxes on the ground. I try to go home but the authorities at the border won't let me back into Canada. There is a hysterical little dog running everywhere. It is in terrible condition and no one will help it. I try to pick it up but it bites me. I drop it and it continues it's hysteria.
4. My father is across the river. It is filled with logs and I try to walk them like a log driver but the logs I choose are really just floating bark. My father is yelling at me. Saying his normal unkind things. " Get up you big baby!" And then he puts on his disgusted face and storms off into the forest. I can hear him but I can't see him. His tirade continues and I know it is hopeless.
All last night the dreams kept coming. None particularly profound or meaningful. None that hard to figure out.
5. I am with my Nanny. Irish for Granny. We are in Parc Frontinac in Montreal. There is a grotto with a Mary in it with flowing blue and white gowns. Her face is pretty. I try to pry the figurine out of the grotto
I have one dream that has been repeated over and over. It is kind. I dream I am standing in a vast prairie field. My hands are covered in prairie dust. I wipe them on my dress. There is a dusty mist and the sounds of the prairies. Grasshoppers, peregrines, wind in the grass. My dress and very long light blond hair are captured by the soft breeze. The dress is long with pin tucks and a full long skirt. It is a faded soft blue green cotton. "This is not my time". But I know I am my great grandmother's mother.
My name is Julia.
In truth I didn't know her name and got a family tree a few years ago. There she was. Not a dream at all. Her name was Julia.
Julia always comforts me. She died when my great grandmother was a little girl.
Is there such a thing as genetic dreaming? I have no memory of Old Gran telling me her name.
Maybe she did.
 |
| My Step Granddaughter Sloane seeking a little comfort from me. |
Sunday, August 10, 2014
Enough Said.
Things have changed once again. My disease progresses.
The cancer is now in my upper spine and at the base of my skull.
There is pain finally which has become harder to manage.
It travels across my back on the right side of the spine. The same side as the most serious
invasion and the first mastectomy. It travels across neck and shoulders, under the arm and to the elbow.
My breast area is filled with scar tissue. New cancer has decided to travel there. Very tender.
I have been having some problems with Morphine and Hydromorphone. Haven't been able to take Codeine
since childhood. They are trying Methadone and Cannibis Oil. Sleeping pills. Everolimus, Spironolactone, a diuretic, Co-exemestane and sleeping pills when needed. This collection of pills requires side effect management. More pills. Acid blockers. Vitamins. A drug to stop my bones from crumbling. Creams to deal with rashes and topical pain. Creams to deal with other delightful side effects. Anti-nauseants. Steroids.
Antibiotics in massive doses when I get sick. Sunblock to cover areas previously radiated.
I now get Palminodrate infusions once a month where I sit in a room with other late stage cancer patients who are still ambulatory. The walking dead. We have the deepest compassion for one another and almost never talk about cancer. It is a strange little club. Four of the terminal in the room with chemicals dripping in from Intravenous bags of many colours. They now have to dig for our veins because they have developed nodules, collapsed or toughened. Three tries and another nurse has to take over. Three more tries and the next nurse takes over. And the digging hurts.
People say things. Tubes coming out of all manner of orifices. "I am trying to make it to Christmas, my kid's wedding, my birthday.". They say nothing about pain. Occasionally about indignity. Often about the effing exhaustion that follows all of us. Some try to obliterate their sense while others , like me, fight tooth and nail to find precious lucidity. Afraid to disappear. Some pray away in the language of their faith. All faiths.
Or talk about losing faith. Or have none and turn in disgust at all the frailty we are to a person.
Cookie ladies come by with treats. Cheerful and chirping nurses. Families who set up picnics and show up baby to granny.
I had radiation to deal with the pain in my lower spine in October and November. It worked pretty well.
But it damaged nerves and I have a very hard time walking down hill or on a slope. I drop things. Have what is known as Breast Cancer Palsy. And cognitive changes again from what is known as Chemo Brain. It makes decisions hard. Abstract thinking is hard. Motivation is impaired. Depression. Mood swings from the hormonal soup I am.
Some good news is that the cancer has retreated from my lungs. That means I can breath with only the occasional reactive airway incident where I choke on foam. But I nod off. Fall asleep. Perceive things wrong.
Have to get up quickly and vomit and fight the constant nausea and dizziness.
I have tried hard to stay alive for a long time. But I don't remember who I was anymore. What emotions belong to me and what are chemical? I have no idea.
This week twice someone told me the story of another person who has lost the will to carry on with all of this. That the person isn't like me. That I am stronger, braver, more motivated. And I gasp. Why is this survival thing a contest worth comparison.
Other people have suggested that I am exaggerating my situation. That I am addicted to morbidity.
That I am really not that sick and can't come back to the world because it is too scary. These things can all be followed up with documentation. I am considered palliative for all that means. Late stage cancer.
I have hair. I look pretty good. I still stand up. Walk now without much pain.
I was offered radiation on the base of my skull this week. It would impare my memory most likely, cause problems with my ear and cause me great pain. I might drool. Vomit a lot. The side effects could be intellectually disastrous. My father lost his ability to move his arms, lost the ability to walk. He died in the hospice living with dirty diapers, bed sores and no longer had a voice except to whisper. He was mostly unconscious for the last few weeks but his pain was not controlled. My fear comes from experience.
I said no! Because the effects will not last. The disease will continue to progress.
I have entered that pissy place where heavy duty anger has settled in. Regret. Hatred. Neediness.
Possessiveness because of the terror of losing one more relationship.
The need to yowl at the moon in agony. In deep sadness. Not my finest hour.
I hate my life. But keep on truckin'. I know that I am lucky. I have had all this time.
How long now? I am so worn out.
I spent time. Minutes. With my friend Karl. He is a week or two from death. His pain permeated every pore in my body. His defeated face peeled my heart. He has tried so hard. His little corner of my life is soon going to fade away. Now he wants to go.
As I am.
I am sick of this. I grieve my old self. The successful, accomplished, sensual and beautiful self who had time for compassion and thought of other people. Of my old charged and adrenalized life. Of my art and ability to follow opportunities. I just need comfort and despite the loving kindness of my family, friends and lovers I simply can't find it. Elvis has left the building.
I have made an appointment with Death With Dignity. I am afraid that if I lose consciousness those who love me will hang on tight. Keep me here. It is inhuman to keep pretending I need anything else.
Chin up. I suppose it is the only answer for now.
The cancer is now in my upper spine and at the base of my skull.
There is pain finally which has become harder to manage.
It travels across my back on the right side of the spine. The same side as the most serious
invasion and the first mastectomy. It travels across neck and shoulders, under the arm and to the elbow.
My breast area is filled with scar tissue. New cancer has decided to travel there. Very tender.
I have been having some problems with Morphine and Hydromorphone. Haven't been able to take Codeine
since childhood. They are trying Methadone and Cannibis Oil. Sleeping pills. Everolimus, Spironolactone, a diuretic, Co-exemestane and sleeping pills when needed. This collection of pills requires side effect management. More pills. Acid blockers. Vitamins. A drug to stop my bones from crumbling. Creams to deal with rashes and topical pain. Creams to deal with other delightful side effects. Anti-nauseants. Steroids.
Antibiotics in massive doses when I get sick. Sunblock to cover areas previously radiated.
I now get Palminodrate infusions once a month where I sit in a room with other late stage cancer patients who are still ambulatory. The walking dead. We have the deepest compassion for one another and almost never talk about cancer. It is a strange little club. Four of the terminal in the room with chemicals dripping in from Intravenous bags of many colours. They now have to dig for our veins because they have developed nodules, collapsed or toughened. Three tries and another nurse has to take over. Three more tries and the next nurse takes over. And the digging hurts.
People say things. Tubes coming out of all manner of orifices. "I am trying to make it to Christmas, my kid's wedding, my birthday.". They say nothing about pain. Occasionally about indignity. Often about the effing exhaustion that follows all of us. Some try to obliterate their sense while others , like me, fight tooth and nail to find precious lucidity. Afraid to disappear. Some pray away in the language of their faith. All faiths.
Or talk about losing faith. Or have none and turn in disgust at all the frailty we are to a person.
Cookie ladies come by with treats. Cheerful and chirping nurses. Families who set up picnics and show up baby to granny.
I had radiation to deal with the pain in my lower spine in October and November. It worked pretty well.
But it damaged nerves and I have a very hard time walking down hill or on a slope. I drop things. Have what is known as Breast Cancer Palsy. And cognitive changes again from what is known as Chemo Brain. It makes decisions hard. Abstract thinking is hard. Motivation is impaired. Depression. Mood swings from the hormonal soup I am.
Some good news is that the cancer has retreated from my lungs. That means I can breath with only the occasional reactive airway incident where I choke on foam. But I nod off. Fall asleep. Perceive things wrong.
Have to get up quickly and vomit and fight the constant nausea and dizziness.
I have tried hard to stay alive for a long time. But I don't remember who I was anymore. What emotions belong to me and what are chemical? I have no idea.
This week twice someone told me the story of another person who has lost the will to carry on with all of this. That the person isn't like me. That I am stronger, braver, more motivated. And I gasp. Why is this survival thing a contest worth comparison.
Other people have suggested that I am exaggerating my situation. That I am addicted to morbidity.
That I am really not that sick and can't come back to the world because it is too scary. These things can all be followed up with documentation. I am considered palliative for all that means. Late stage cancer.
I have hair. I look pretty good. I still stand up. Walk now without much pain.
I was offered radiation on the base of my skull this week. It would impare my memory most likely, cause problems with my ear and cause me great pain. I might drool. Vomit a lot. The side effects could be intellectually disastrous. My father lost his ability to move his arms, lost the ability to walk. He died in the hospice living with dirty diapers, bed sores and no longer had a voice except to whisper. He was mostly unconscious for the last few weeks but his pain was not controlled. My fear comes from experience.
I said no! Because the effects will not last. The disease will continue to progress.
I have entered that pissy place where heavy duty anger has settled in. Regret. Hatred. Neediness.
Possessiveness because of the terror of losing one more relationship.
The need to yowl at the moon in agony. In deep sadness. Not my finest hour.
I hate my life. But keep on truckin'. I know that I am lucky. I have had all this time.
How long now? I am so worn out.
I spent time. Minutes. With my friend Karl. He is a week or two from death. His pain permeated every pore in my body. His defeated face peeled my heart. He has tried so hard. His little corner of my life is soon going to fade away. Now he wants to go.
As I am.
I am sick of this. I grieve my old self. The successful, accomplished, sensual and beautiful self who had time for compassion and thought of other people. Of my old charged and adrenalized life. Of my art and ability to follow opportunities. I just need comfort and despite the loving kindness of my family, friends and lovers I simply can't find it. Elvis has left the building.
I have made an appointment with Death With Dignity. I am afraid that if I lose consciousness those who love me will hang on tight. Keep me here. It is inhuman to keep pretending I need anything else.
Chin up. I suppose it is the only answer for now.
Silk Roads
I dreamed
of her again.
Always walking while unwinding and winding.
I saw the beautiful silk cloth woven in Turkey.
My mother brought it back with her and told me of the Haggai Sophia.
It remains in a box covering the tiny red wooden shoe
that is the only physical thing left from the day she had to go.
The box has traveled everywhere I have been for more than 30 years.
Over and over during darker nights she wanders wherever she wants.
Winding and unwinding while staggering through knee deep sand. Pebbled and dusty roads. Through icy tributaries.
Empress Leizu had no idea what the steam released when her tea soaked cocoon
let go the power of an ugly butterfly. It evolved as all insects do.
The very first flutter after life as a lazy, hungry caterpillar.
But sacrificed for the thread that wove a cloth laid down as the first cobble for a long way home.
This road once again is lit with the blue poppy that enables my comfort.
Morphine and silken purple sheets soaked in the oozing from crushed Murex snails
but once again on the road to Damascus. To metamorphosis. Described as changing from one physical manifestation to another. Damascus is a destination not yet completed.
Winding and unwinding one more time. We are all walking in the same rutted road very sure of each layered step. Dragging thin threads to mark the way home. More effective than bread crumbs.
of her again.
Always walking while unwinding and winding.
I saw the beautiful silk cloth woven in Turkey.
My mother brought it back with her and told me of the Haggai Sophia.
It remains in a box covering the tiny red wooden shoe
that is the only physical thing left from the day she had to go.
The box has traveled everywhere I have been for more than 30 years.
Over and over during darker nights she wanders wherever she wants.
Winding and unwinding while staggering through knee deep sand. Pebbled and dusty roads. Through icy tributaries.
Empress Leizu had no idea what the steam released when her tea soaked cocoon
let go the power of an ugly butterfly. It evolved as all insects do.
The very first flutter after life as a lazy, hungry caterpillar.
But sacrificed for the thread that wove a cloth laid down as the first cobble for a long way home.
This road once again is lit with the blue poppy that enables my comfort.
Morphine and silken purple sheets soaked in the oozing from crushed Murex snails
but once again on the road to Damascus. To metamorphosis. Described as changing from one physical manifestation to another. Damascus is a destination not yet completed.
Winding and unwinding one more time. We are all walking in the same rutted road very sure of each layered step. Dragging thin threads to mark the way home. More effective than bread crumbs.
Saturday, July 26, 2014
Dawn
Sat alone and watched the sun come up.
Paying attention to what I can. Simple things. No one else is up yet.
It really is all about the light. It reflects off the red bark of the Madrona trees and the seed heads of
the grasses. Everything is tinged with the moisture of the Salish Sea.
And I thought I don't need to draw a tree or try to imitate this perfection. All my landscapes are internal. My textiles are a net to capture tiny beasts and furtive feelings. My sculptures are what crawls out endlessly.
And then I thought. There is a difference between a performance and a silent reflection. The difference for the need for the external and the internal. And what is true perfection.
I don't need to show my beauty. Or bejewel what is there. Because it is perfect. The life and death of it. I keep it hidden from sight because it is too beautiful to show. It is so precious that the light would carry it away.
Paying attention to what I can. Simple things. No one else is up yet.
It really is all about the light. It reflects off the red bark of the Madrona trees and the seed heads of
the grasses. Everything is tinged with the moisture of the Salish Sea.
And I thought I don't need to draw a tree or try to imitate this perfection. All my landscapes are internal. My textiles are a net to capture tiny beasts and furtive feelings. My sculptures are what crawls out endlessly.
And then I thought. There is a difference between a performance and a silent reflection. The difference for the need for the external and the internal. And what is true perfection.
I don't need to show my beauty. Or bejewel what is there. Because it is perfect. The life and death of it. I keep it hidden from sight because it is too beautiful to show. It is so precious that the light would carry it away.
Tuesday, July 22, 2014
Awkward Dance
Both times I lost you
it was about the duplication of cells
that were not released from me
or were
to become a scarlet stream
filled with what remained of the
last tender contact.
I will miss the two of you always.
Despite discretion.
And awkward dances.
For XXOOB
Sunday, July 20, 2014
Packaging It Up For Good.
I am in for emergency radiation in one week. On my upper spine.
To knock the tumour growth in my bones back and to stop this
endless pain.
The treatment has started already. It is going to be a lot more
difficult than the last treatment. Once again I have to find a balance point so
I can cope. Some days I really can't and have to find a starting all over point.
Femke van Delft is here to do many things including documenting my
work and experiments. My hidden corners. The process.
I have been asked to talk more about my life. ...
I wonder what it is responsible for me to reveal. This freezes my blood.
Does that mean I talk about what is hidden and things nearly forgotten?
Failures? Desires? Obsessions? Accomplishments?
I am really not ready for this but time is pretty close to the bone.
So all my stuff gets hauled out and discussed in an objective but passionate way which will
hopefully leave this trace of me with a touch of meaning.
In the meantime I will try to wrap things up into a tidy little package.
To knock the tumour growth in my bones back and to stop this
endless pain.
The treatment has started already. It is going to be a lot more
difficult than the last treatment. Once again I have to find a balance point so
I can cope. Some days I really can't and have to find a starting all over point.
Femke van Delft is here to do many things including documenting my
work and experiments. My hidden corners. The process.
I have been asked to talk more about my life. ...
I wonder what it is responsible for me to reveal. This freezes my blood.
Does that mean I talk about what is hidden and things nearly forgotten?
Failures? Desires? Obsessions? Accomplishments?
I am really not ready for this but time is pretty close to the bone.
So all my stuff gets hauled out and discussed in an objective but passionate way which will
hopefully leave this trace of me with a touch of meaning.
In the meantime I will try to wrap things up into a tidy little package.
 |
| Add caption |
Monday, July 7, 2014
Anonymous Flowers.
I hung my first pieces for public view on Mayne Island. It is for the show "Hot Rocks".
It was pulled together by the Southern Gulf Island's Arts Council. I just joined.
The show was hung with haphazard community delight. The hanging committee had really not seen any of the work before it was brought into the showplace. Tim stayed with me and negotiated a really visible place for my work. It had lighting and could be seen soon after entering the door. He would only hang the work himself. I suggested that we just draw an instruction map and leave it. Nope. He was armed with measuring tapes and a complete hanging tool kit. He hip checked all other helpers out of the way. He parked me in a rocker near the window so I could see the sea and my work.
The opening happened on Saturday night. The Island residents and holiday people attended. Music and spoken word. Wine and really good food. The deal was...you bring a potluck snack and wine...the cost of the opening shared. And it was fun.
George Bathgate showed his antlered mask. Jen Osh showed her lovely doll. Drew Ferneyhough showed his beautiful transmorphic paintings. Kat Ferneyhough did this delicious little sculpture made from paper
There were four pieces of my work from the series "Underground". Not for sale and not new.
I was shocked at how well received the work was. Tons of people talked to me, asked questions, asked to buy, asked where else I was showing and asked..."What is it?" "How is it?" People seen since I moved here but had not yet talked to offered me hugs and kind comments. Invited me to other things.
I got home and there was a bouquet of little yellow roses at the door.
No idea from who. Anonymous flowers.
It was pulled together by the Southern Gulf Island's Arts Council. I just joined.
The show was hung with haphazard community delight. The hanging committee had really not seen any of the work before it was brought into the showplace. Tim stayed with me and negotiated a really visible place for my work. It had lighting and could be seen soon after entering the door. He would only hang the work himself. I suggested that we just draw an instruction map and leave it. Nope. He was armed with measuring tapes and a complete hanging tool kit. He hip checked all other helpers out of the way. He parked me in a rocker near the window so I could see the sea and my work.
The opening happened on Saturday night. The Island residents and holiday people attended. Music and spoken word. Wine and really good food. The deal was...you bring a potluck snack and wine...the cost of the opening shared. And it was fun.
George Bathgate showed his antlered mask. Jen Osh showed her lovely doll. Drew Ferneyhough showed his beautiful transmorphic paintings. Kat Ferneyhough did this delicious little sculpture made from paper
There were four pieces of my work from the series "Underground". Not for sale and not new.
I was shocked at how well received the work was. Tons of people talked to me, asked questions, asked to buy, asked where else I was showing and asked..."What is it?" "How is it?" People seen since I moved here but had not yet talked to offered me hugs and kind comments. Invited me to other things.
I got home and there was a bouquet of little yellow roses at the door.
No idea from who. Anonymous flowers.
Thursday, July 3, 2014
Colour Retreat
Sweethaven is starting to provide respite for travelling artists. So many people have visited
and both rested and created. This is what I wanted and this is the perfect time for me.
Paula Scott is visiting for a few days and Femke van Delft is coming in later today.
This morning Paula and I are on the side deck. I am burning away and she is painting backdrops for a show at Robson Valley.
and both rested and created. This is what I wanted and this is the perfect time for me.
Paula Scott is visiting for a few days and Femke van Delft is coming in later today.
This morning Paula and I are on the side deck. I am burning away and she is painting backdrops for a show at Robson Valley.
 |
| Artist Paula Scott painting a backdrop for the Robson Valley Music Festival. |
Monday, June 23, 2014
Loading the Globes
The piano is here and I spent most of the day trying to learn to play John Lennon's song "Imagine".
And then I was looking at the piano and some of my art that is starting to crawl into the main living area at Sweethaven. The domes peaked out somewhere near the buffet. They migrated to the top of the piano waiting to be loaded. Art out of storage once again.
I am so tired this week. Cancer seems like nothing but a weight over my being.
I woke up and just missed Tim. The energetic buzz we were before cancer knocked us both over. Our sensuality. The purposefulness of raising our family and connecting.
We talked about how hard we both tried to make this work and be happy and that mostly that was the truth.
He said he would tell anyone who asked that we had this happy, happy marriage that allowed for growth and a real life. And time to bake bread. And that he was never bored one single day with me. I didn't know that.
This weekend I made his favourite kind of food. A chicken and garlic scape pie. A huge kale and pickled beet salad. Nice wine. Berries and mango in Grand Marnier and pepper.
He has never stopped loving the Beatles. When he gets back to Sweethaven I hope I can play "Imagine".
And then I was looking at the piano and some of my art that is starting to crawl into the main living area at Sweethaven. The domes peaked out somewhere near the buffet. They migrated to the top of the piano waiting to be loaded. Art out of storage once again.
I am so tired this week. Cancer seems like nothing but a weight over my being.
I woke up and just missed Tim. The energetic buzz we were before cancer knocked us both over. Our sensuality. The purposefulness of raising our family and connecting.
We talked about how hard we both tried to make this work and be happy and that mostly that was the truth.
He said he would tell anyone who asked that we had this happy, happy marriage that allowed for growth and a real life. And time to bake bread. And that he was never bored one single day with me. I didn't know that.
This weekend I made his favourite kind of food. A chicken and garlic scape pie. A huge kale and pickled beet salad. Nice wine. Berries and mango in Grand Marnier and pepper.
He has never stopped loving the Beatles. When he gets back to Sweethaven I hope I can play "Imagine".
.jpg) |
| Globes in the sandy fish tank. |
.jpg) |
| Egg and nest. Felted poly . Machine embroidery It is opaque. |
 |
| Globes on the piano waiting to be loaded with my little sculptures. |
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