Presenting one artwork, and the detritus from the Day of the Dead performance, makes me want to present everything I wrote about that blank piece of paper, which I cut up and distributed with this note, to all the guests. Forgive the repetition from a previous post. In real life, things weave, repeat, abbreviate, rephrase, expand, as they will here.
For Gavin O'Leonard
I have very few regrets, but I do wish I had said this at Gavin’s memorial service.
Gavin always believed the meaning of his work was in the eye of the beholder. He hated writing artists’ statements and trying to explain. “That’s just what I think the work means,” he’d say. “That has nothing to do with anything!” He believed that only your eyes at a particular time can see the work and give it meaning, a highly individual meaning each time you view any piece.
And God, Gavin hated the way his work looked on slides. When you have a slide, you have a feeble reproduction, with light shining through it, of what the camera saw on that day. Light is so much brighter than white cotton. It just gets flattened by the lights given the camera, which reflect back on the surface, and then the work would get washed out from the bright light of a slide projector. He said his work looks better in person because in his technique, the light comes from inside the paper.
I saw from watching him work how well he understood every fiber of the Arches he listened to every day from 10 to 10 with breaks for lunch, dinner, the news and a few beers. While it looked pale, in Gavin’s classic work he ground the pigments of the pencils deep into the paper, punishing the cotton fibers while he made them sing. (Ask me about the “original” Smithy drawing if you don’t believe me.) The paper was another skin. That Arches 100% rag paper was his partner more than anything.
He also pointed out how in the classic O'Leonard, the source of the light is never pictured. A device from Vermeer and others, very classical.
So this what I wish I had read at the memorial service on June 25, 2006 – when we showed his “Audubon of Lamps” drawings – this quote from the Buddha, whom Gavin respected more than any other teacher:
Therefore, be ye lamps unto yourselves, be a refuge to yourselves. Hold fast to Truth as a lamp; hold fast to the truth as a refuge. Look not for a refuge in anyone beside yourselves. And those, who shall be a lamp unto themselves, shall betake themselves to no external refuge, but holding fast to the Truth as their lamp, and holding fast to the Truth as their refuge, they shall reach the topmost height.
- - - - - - (p. 2) - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
This is a piece of the first drawing that Gavin did not start. It was hung and ready to go on the studio wall. It would have been used as the base for the fifth piece in The Mysteries, which I always considered the culmination of his life and life’s work. I only wished he had started it earlier.
(Wives!)
Please use this paper to write a note to someone you love right now, to write a note to Gavin which you can burn and thus send to him in the afterworld (if he’s in one of the seven Chinese hells still), or to make a drawing. Or just feel the cotton and remember his every day. Or all of the above.
It’s yours now.
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2.07.2009
Death is the Mother of Beauty.
It occurs to me how wordy I can be when there are wonderful visuals. Writing about the Days of the Dead reminded me that I have pictures of them.
802, 801, 800. The top of the ofrenda. (Left) Fertility charms from friends, hospital bracelets. (Center) Gavin’s baby sweater, birthday greetings, our rings, a sex charm I made in a sardine can. (Right) Photos, wedding invitation, more hospital bracelets.
806, 807, 808. The base of the ofrenda. (Left) Portrait of Gavin by a friend, milagro. (Center) Wooden flowers intended for our wedding, mums, painting from Oaxaca. (Right) Drawing of Gavin by a friend.
2006_Cancer Drawings. I’m not actually sure when Gavin did these, possibly in the summer of 2005, before the spine surgery. Everyone is drawn to them. I despised them on first sight. “Look, honey, I’m drawing the cancer going away.” Grrrr. It looked to me like he drew himself fading away. Losing weight, holes in his bones, mets all over, one drug after another, it still looks like prophecy.
It saddens me that people respond well to them – that he thought they would work, as part of his “visualization” routine, making it real with his eyes and his hands. And perhaps it’s contempt that makes me tell visitors how I thought these pieces foretold how he would erode and then disappear from this world. People want to buy them, I am broke but I don’t care. (Though I don't really want to keep them, either).
It’s not what he would have done, before disease, during, or now.
810. The blank piece of paper, hanging at the ready, which I cut up to make “party favors” for the 2007 Day of the Dead fire dance dedicated to Gavin.
I could talk more about how my Dad was a a photographer, and how careless I am about my history through images. I could talk about how a collective offering with Felipe Ehrenberg turned me back into an artist again, a long time ago. But for now, I’ll let the pictures do the talking.
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802, 801, 800. The top of the ofrenda. (Left) Fertility charms from friends, hospital bracelets. (Center) Gavin’s baby sweater, birthday greetings, our rings, a sex charm I made in a sardine can. (Right) Photos, wedding invitation, more hospital bracelets.
806, 807, 808. The base of the ofrenda. (Left) Portrait of Gavin by a friend, milagro. (Center) Wooden flowers intended for our wedding, mums, painting from Oaxaca. (Right) Drawing of Gavin by a friend.
2006_Cancer Drawings. I’m not actually sure when Gavin did these, possibly in the summer of 2005, before the spine surgery. Everyone is drawn to them. I despised them on first sight. “Look, honey, I’m drawing the cancer going away.” Grrrr. It looked to me like he drew himself fading away. Losing weight, holes in his bones, mets all over, one drug after another, it still looks like prophecy.
It saddens me that people respond well to them – that he thought they would work, as part of his “visualization” routine, making it real with his eyes and his hands. And perhaps it’s contempt that makes me tell visitors how I thought these pieces foretold how he would erode and then disappear from this world. People want to buy them, I am broke but I don’t care. (Though I don't really want to keep them, either).
It’s not what he would have done, before disease, during, or now.
810. The blank piece of paper, hanging at the ready, which I cut up to make “party favors” for the 2007 Day of the Dead fire dance dedicated to Gavin.
I could talk more about how my Dad was a a photographer, and how careless I am about my history through images. I could talk about how a collective offering with Felipe Ehrenberg turned me back into an artist again, a long time ago. But for now, I’ll let the pictures do the talking.
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2.03.2009
Two and a Half Years, Dozens of Anniversaries
Is it the mid-winter blahs, or real S.A.D.?
Is it that we haven't had a break, got married fast, no honeymoon, childrearing consumes all?
Is it that I overvolunteered for church stuff?
Is it that pizza I had delivered on Friday was so bad that it made me take the failing economy much, much more seriously? I mean, when you eat something, you really internalize it.
Or is it that I remember this day three years ago – my daughter's second birthday – when I had to get up super early to drive an hour to the hospital and pick up the prescriptions my dying husband had neglected to pick up?
February 1, 2006. When I came home from work, he'd been asleep for a few hours after his visit to the oncologist. Cindy had driven him there and back, and gotten a wheelchair to wheel him through the medical center. He was on Nexavar, the first miracle drug, which was sapping his energy and seemed to be stealing his breath. He could barely move without collapse. Cindy was one of his oldest friends, and she not only helped but enjoyed getting some time with him.
He was close to the end of his life, but I didn't know it, or admit it, and the drug was actually working.
After he'd woken up and eaten a few paltry bites of dinner he started to put his prescriptions away. I think there were eight that day. Three were missing – all the opiates: the patch, for a continuous low dose; and two strengths of oxycodone to supplement whether he needed a big hit or a little one. He had the tags, but not the bags, and we were down to maybe one pill.
And it was the night before our daughter's second birthday.
It was a complicated situation. He'd paid for them, and they were opiates; yes, they had them stored in the safe so it was a little complicated to pick them up, but really. If someone at the pharmacy had their eyes open they could steal them with no trouble at all by "forgetting" to put them in the bag. It would be so easy to take advantage of my sleepy 100-lb husband in his wheelchair, with his ditzy escort. Maybe it's the New Yorker in me, but I don't trust anyone, and there are some pharmacy workers who abuse their access. I had no reason to distrust these folks, but it's a large public hospital with many indigent patients in a forlorn secondary city, and I had, in the past, experienced consistent problems with another pharmacy giving me 28 pills instead of 30 for a maintenance drug. (And that had happened when I was paying out of pocket and generic was not yet available. So I really felt it.)
I was furious. I thought how much pain he'd have that night with only one pill available. I thought how lack of sleep and what minimal humor was left would hurt the next day's birthday festivities. I was the only competent adult around and the only one who could drive (opiates made him unwilling to risk driving). I had a busy day at work plus the birthday stuff. I was failing. I couldn't do it all. This, I had to.
He kept saying, "But the tags were there! Why would I think to see if the bags were full?" It was a huge handful of white bags and tags, plus receipts on top.
"See if your goddamn TAGS keep you warm at night!" I fumed.
I was going to be pissed, but I also had to act. I left a long, very anxious message for the pharmacy which was, of course, closed. And I rose early like the Groundhog to be at the hospital when the pharmacy opened. They hadn't listened to my message yet. The drugs were still in the safe and they apologized profusely.
I dropped the drugs back at the house, where Gavin was lying on the pulled-out futon (it was the middle of his two months there), told him I loved him and gave him a kiss, played with my girl, arranged dinner with my Mom, and went to the office.
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Is it that we haven't had a break, got married fast, no honeymoon, childrearing consumes all?
Is it that I overvolunteered for church stuff?
Is it that pizza I had delivered on Friday was so bad that it made me take the failing economy much, much more seriously? I mean, when you eat something, you really internalize it.
Or is it that I remember this day three years ago – my daughter's second birthday – when I had to get up super early to drive an hour to the hospital and pick up the prescriptions my dying husband had neglected to pick up?
February 1, 2006. When I came home from work, he'd been asleep for a few hours after his visit to the oncologist. Cindy had driven him there and back, and gotten a wheelchair to wheel him through the medical center. He was on Nexavar, the first miracle drug, which was sapping his energy and seemed to be stealing his breath. He could barely move without collapse. Cindy was one of his oldest friends, and she not only helped but enjoyed getting some time with him.
He was close to the end of his life, but I didn't know it, or admit it, and the drug was actually working.
After he'd woken up and eaten a few paltry bites of dinner he started to put his prescriptions away. I think there were eight that day. Three were missing – all the opiates: the patch, for a continuous low dose; and two strengths of oxycodone to supplement whether he needed a big hit or a little one. He had the tags, but not the bags, and we were down to maybe one pill.
And it was the night before our daughter's second birthday.
It was a complicated situation. He'd paid for them, and they were opiates; yes, they had them stored in the safe so it was a little complicated to pick them up, but really. If someone at the pharmacy had their eyes open they could steal them with no trouble at all by "forgetting" to put them in the bag. It would be so easy to take advantage of my sleepy 100-lb husband in his wheelchair, with his ditzy escort. Maybe it's the New Yorker in me, but I don't trust anyone, and there are some pharmacy workers who abuse their access. I had no reason to distrust these folks, but it's a large public hospital with many indigent patients in a forlorn secondary city, and I had, in the past, experienced consistent problems with another pharmacy giving me 28 pills instead of 30 for a maintenance drug. (And that had happened when I was paying out of pocket and generic was not yet available. So I really felt it.)
I was furious. I thought how much pain he'd have that night with only one pill available. I thought how lack of sleep and what minimal humor was left would hurt the next day's birthday festivities. I was the only competent adult around and the only one who could drive (opiates made him unwilling to risk driving). I had a busy day at work plus the birthday stuff. I was failing. I couldn't do it all. This, I had to.
He kept saying, "But the tags were there! Why would I think to see if the bags were full?" It was a huge handful of white bags and tags, plus receipts on top.
"See if your goddamn TAGS keep you warm at night!" I fumed.
I was going to be pissed, but I also had to act. I left a long, very anxious message for the pharmacy which was, of course, closed. And I rose early like the Groundhog to be at the hospital when the pharmacy opened. They hadn't listened to my message yet. The drugs were still in the safe and they apologized profusely.
I dropped the drugs back at the house, where Gavin was lying on the pulled-out futon (it was the middle of his two months there), told him I loved him and gave him a kiss, played with my girl, arranged dinner with my Mom, and went to the office.
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1.30.2009
Introducing My New (FREE) Product!
The Widow Card!
One night in my support group, S. said casually that he’d “left work early… I just pulled a widower card.” I thought about how often I’d done this in the months since LH died, but more about how I could make good use of some little advantage. All the handicaps I was living with… single (really, double) parenting, how impossible it was to go grocery shopping with a toddler, and how no one could see that anything was wrong. The side of me that is tempted to shoplift (but only cashmere or chocolate) was aroused.
I was always comfortable as an underachiever, but could I have some legitimate “cover” after surviving catastrophe? Something versatile? Something I could use every day?
And so the concept was born: Not as useful as a “get out of jail free” card, more powerful than a hall pass… it’s… it’s… The Widow Card!
How to create your own REAL LIFE Widow (or Widower) Cards:
1. Download the PDF
Womenfolk – Download the Widow Card Set A here (PDF)
Menfolk – Download the Widower Card Set A here (PDF)
2. Purchase Avery 5871 pre-perforated business card stock at your local office supply store.
3. Print the PDFs out on your stock. They are double sided; you’ll have to figure out how to run the paper stock through your machine twice.
Also, please note that you WILL get error messages saying you’re printing outside the print area, and so on. Just IGNORE it, and don’t let it automatically adjust the margins, or your widow cards will look a whole lot less slick.
4. Didn’t buy the special paper? No problemo. Print your Widow Cards out on heavyweight paper or card stock and cut them out by hand. The stripy border will hide mistakes if your scissors get shaky because you are laughing.
When can I use The Widow Card?
Pull The Widow Card on someone at work, at home, or in line at the grocery store… heck, take more than one, we’ve got nearly a dozen* here for you. You’ll be amazed at how often these little babies come in handy!
What good will it do me now?
Let The Widow Card simplify your life … avoid long awkward conversations (or silences) … evade minor niceties like being polite, remembering people’s names, and participating in adult society in a normal fashion.
But, dude, I’m a guy.
Chill – there are widower versions as well. Since there are seven widowed women to every widower, I think I can be forgiven for favoring the gals linguistically.
Okay, I get it. I can’t wait to start using my Widow Cards!
Slow down, cowpoke. There are three steps – well, four. Did you read the instructions yet? If not, there is one more – so that’s five. Number 0: read the instructions above! Then follow steps 1 to 4 in order.
How long can I use The Widow Card?
Use The Widow Card until it stops working.
UPDATE 06/09: Keep a couple handy. They work great around anniversaries, even years later!
But I need an excuse for something and you don’t have a Widow Card that fits!
Relax. You can send in your requests for new situations that deserve a Widow Card. Don’t like the suggestions for men? Find the women’s ones inappropriate? Your wish is my command. Let me know what you want, and I will issue a new set B, C, etc. Write to supa.dupa.fresh AT gmail.com. (I don’t promise to be prompt.)
About the design
The font is Mrs. Eaves by Zuzana Licko and published by Émigré. Of course, I thought the character Mrs. Eaves was fictional, and I’m a bit disappointed to find out she was real (or, I am delighted that this fictional character has been accepted as real, as the font and its hyperactive, sometimes shizoid ligatures have gained legitimacy).
Either way, however, Mrs. Eaves was a widow, so my point stands.
Full disclosure: In this project, I owe a significant debt to the work of conceptual artist Adrian Piper.
* Hey, that’s a new expression: widow’s dozen – ten of something. Huh!
* * * Some comments * * *
I was always comfortable as an underachiever, but could I have some legitimate “cover” after surviving catastrophe? Something versatile? Something I could use every day?
And so the concept was born: Not as useful as a “get out of jail free” card, more powerful than a hall pass… it’s… it’s… The Widow Card!
How to create your own REAL LIFE Widow (or Widower) Cards:
1. Download the PDF
Womenfolk – Download the Widow Card Set A here (PDF)
Menfolk – Download the Widower Card Set A here (PDF)
2. Purchase Avery 5871 pre-perforated business card stock at your local office supply store.
3. Print the PDFs out on your stock. They are double sided; you’ll have to figure out how to run the paper stock through your machine twice.
Also, please note that you WILL get error messages saying you’re printing outside the print area, and so on. Just IGNORE it, and don’t let it automatically adjust the margins, or your widow cards will look a whole lot less slick.
4. Didn’t buy the special paper? No problemo. Print your Widow Cards out on heavyweight paper or card stock and cut them out by hand. The stripy border will hide mistakes if your scissors get shaky because you are laughing.
When can I use The Widow Card?
Pull The Widow Card on someone at work, at home, or in line at the grocery store… heck, take more than one, we’ve got nearly a dozen* here for you. You’ll be amazed at how often these little babies come in handy!
What good will it do me now?
Let The Widow Card simplify your life … avoid long awkward conversations (or silences) … evade minor niceties like being polite, remembering people’s names, and participating in adult society in a normal fashion.
But, dude, I’m a guy.
Chill – there are widower versions as well. Since there are seven widowed women to every widower, I think I can be forgiven for favoring the gals linguistically.
Okay, I get it. I can’t wait to start using my Widow Cards!
Slow down, cowpoke. There are three steps – well, four. Did you read the instructions yet? If not, there is one more – so that’s five. Number 0: read the instructions above! Then follow steps 1 to 4 in order.
How long can I use The Widow Card?
Use The Widow Card until it stops working.
UPDATE 06/09: Keep a couple handy. They work great around anniversaries, even years later!
But I need an excuse for something and you don’t have a Widow Card that fits!
Relax. You can send in your requests for new situations that deserve a Widow Card. Don’t like the suggestions for men? Find the women’s ones inappropriate? Your wish is my command. Let me know what you want, and I will issue a new set B, C, etc. Write to supa.dupa.fresh AT gmail.com. (I don’t promise to be prompt.)
About the design
The font is Mrs. Eaves by Zuzana Licko and published by Émigré. Of course, I thought the character Mrs. Eaves was fictional, and I’m a bit disappointed to find out she was real (or, I am delighted that this fictional character has been accepted as real, as the font and its hyperactive, sometimes shizoid ligatures have gained legitimacy).
Either way, however, Mrs. Eaves was a widow, so my point stands.
Full disclosure: In this project, I owe a significant debt to the work of conceptual artist Adrian Piper.
* Hey, that’s a new expression: widow’s dozen – ten of something. Huh!
* * * Some comments * * *
12.25.2008
Denial and cancer: my experience as half of a couple
I’ve been playing catchup -- reading the stories of other widows and widowers with young kids. Snickollet, Dorcasina, and Crash Course Widow are the top three now. I’m trying to get through years of old entries, because to some degree I should be making friends.
Walking through these deaths and grieving experiences again, so similar to my own, may be contributing to my general Christmas drear. Of course it doesn’t help that I am itchy, my eyes since August, my ankles acting up now and then, and headaches that may mean I’m now a migraineur. (Another club that no one wants to join.)
One thing I’ve been fascinated with is the cancer denial. Gavin really did not think he was going to die; Kubler-Ross says they all do. And basically, I knew he would. I felt he was always too optimistic. I had married a man 20 years older and we’d had other health scares. But we had a peculiar balance, between the two of us, between seeing and denial, between wanting and knowing, and it changed all the time.
Shortly after his death I went back to the therapist he and I had seen a few times during his last 6 months. We had seen her in 1999 after he’d first “died” in the kitchen and I’d had a one-night-stand affair. We were in the middle of our 8 year struggle/indecision about infertility and the anger was so close to the surface. That counseling probably saved our marriage -- we came out the whole deal stronger. She thought he was charming, even when he used the Simpsons line, “And I’m an excellent husband” in session.
After his death, she offered me a few sessions, free, whenever I wanted them, to help “close things out.” She felt for us, and the things we were trying and she knew they were not settled. It took me nearly a year to take her up on it. Seeing her alone, remembering the sessions and where we were in our minds, where we met and where we tussled, was so helpful. After three sessions I was very grateful to her; it had truly helped.
What had helped? To see how different we were. To know that someone else saw us not on the same page, and it was normal, and it was okay. To have someone else acknowledge how much that was hurting me. To have someone say I had done everything I could, that I had nothing to feel guilty about, even though we couldn’t be a perfect team in this one project.
After those sessions, I wrote up this chronology of our ideas about dying.
Basic chronology and how I thought about his death:
1. 1999, When he fell (defib #3 and device initial failure): Oh God. Not yet, please. NO!
2. Sept. 2004, At diagnosis, “Oh honey. It’s cancer”: Oh God. It’s here. How do we want things to end? Make peace with everyone. Be kind. Be together. Quit my job. Find meaning and never do anything I don’t want to. Touch. Don’t let go of my child. Intense shock. Awe. Sadness. Always knew it would come first for him, but not now, not when our child needs us, not when everything is in flux, let’s say goodbye first and settle everything.
3. Oct. 2004, Dr. Schmaltz: We’re learning about how to deal with this terrible system, but since Gavin is feeling well and we seem to have some options, death seems pretty far away. Then again, what we don’t know scares us, so we only look one step ahead. An important survival tactic that lasted a long time.
4. Nov. 2004, first surgery: He could beat this, but the end is closer than I had hoped.
5. Jan. 2005, looking forward to IL-2: This could work, even if it did, the disease could recur, but would buy us a few more years.
6. Feb. 2005, rejected from IL-2, take low dose IL-2: This could buy us some time, but not as much.
7. Oct. 2005, spine about to collapse, insensitive doctors: How did those assholes miss this. He could die from their negligence. The surgery offers increased quality of life for however long he has left. I know he is going to die.
8. Oct. 2005, during the second surgery: He’ll pull through this but it’s brutal now. Is it worth it for increased quality of life for a little bit of time? (Maybe a year).
9. Oct. 2005, lost X-rays delays radiation treatment by 3 weeks: Those assholes! They are taking MONTHS off his life.
10. Nov. 2005, recovery and radiation. He’s having fun finishing paintings for a show. He’s taking good care of himself and having fun with SS, but very fatigued. He is not on treatment. Sense of dread. We are trying not to look.
11. Dec. 2005: anticipating Nexavar. Real hope. He could get another year of good quality of life and do some work and have some fun. We could say goodbye leisurely and just.
12. Jan. 2006, on Nexavar: Thank God it was approved. But he is so unhappy. If this works, this could be the miracle, but will he be happy enough if “this is life” on the drug?
13. Jan. 2006: He thinks the drug can cure him, but it won’t rebuild that part of his spine that the tumor ate; he will always have a cane.
14. Mar. 2006, follow up about spine about to collapse again (one strut of prosthesis broken): Insensitive, incompetant, lazy, awkward, covering-up damn doctors. You fucking jerks. I wish we’d never met you.
15. Apr. 2006, not letting anything slippery on the floor, with a 2 year old and no other able bodied adult ever around: If I can keep him from falling, things might be okay. Dealing with disability, pain, the prospect of another reconstructive surgery when the first one failed and nearly killed him, he couldn’t take any chemo while recovering. This was the thought – not death.
16. Apr. 2006, anticipating Sutent: It’s not as powerful a drug. Maybe it will give us a few months. Nexavar worked great – marked reduction – but new tumors growing.
17. Apr. 2006, Kat visits for a lovely, sunny afternoon: Much later, she observed that death was present then. I asked her if death was like the elephant in the living room. She said, no, it was more like a kitten. Every now and then, it would need attention and one of us would reach down to pet it.
18. May 2006, possibility of second primary: These things are so much larger than I ever imagined. Can’t deal with learning about and advocating for another cancer. Please don’t say “lung.” I’m ready to give up, can I die too? I could. I know I can’t stay here and do this again.
19. May 2006, on Sutent. Please bring us a few more months with no symptoms that ruin life at the time.
20. May 2006, shingles, thrush: Oh God. Are these nuisances or signs of immune system collapse and the impending end? I am angry at him for quitting Nexavar, what is life in bed compared with death? He is not being reasonable given the choices before him.
21. May 2006, we take a desperate, spontaneous vacation in WV, SS scratches his cornea: I tried to make things nice, but there was not that much I could do. He was in pain from this minor, minor injury done by his greatest love at a fighting bedtime. He was helping me by helping to put her to bed.
22. May 2006: I am pretty sure he’ll make it to his birthday (July), but possibly not to mine (Sept.), and not to our tenth anniversary (Oct.).
23. May 2006, the last two weeks (“The mediastinum is….full.”): That’s no big deal. We already know that. He’s been coping with these same challenges for almost two years. I don’t know what death is or how it could or would happen. I don’t understand what’s happening despite a sympathetic doctor and many explanations. I don’t believe it, I don’t listen, I don’t undertand, I get lost in details. Agree with Gavin mostly, but still know I have to hide some things from him. Mixed feelings about doing this.
24. May 2006, the last week: I can do something. I bet there are still treatment options that would make things easier. Perhaps I can get a few more months out of him. He won’t be happy living in bed, but it’s fine with me, who cares what he wants. We'd be able to say goodbye.
25. June 2006, the last two days: I tell visitors to “Tell him you’ll take care of us and that he is free to go if he needs to.”
26. June 2006, the last hours: I can’t do anything. He deserves peace. I want him to be happy but I want him to be here and I can’t do that. Too bad he believes there’s nothing beyond. I know death is real and forever.
How I think he thought about death at different times.
1. Sept. 2004: I will live to see SS’s first soccer game. (So I was reluctant to even let her kick a ball as an infant).
2. Oct. 2005, Dr. Schmaltz: If you think I am just going to give in, you are wrong.
3. Jan. 2005: I will be around for 22 more years, MINIMUM.
4. Feb. 2005: I will see SS graduate from college.
5. Feb. 2005, rejected from IL-2. Nonsense. My heart is perfectly fine. The doctors don’t know my body.
6. Oct. 2005, after reconstructive spine surgery: This is the hardest thing I’ve ever done. I always win out of sheer dumb persistence with blunt tools. Blunt determination. I’m stubborn. My body is amazing. God made it right but with cracks, but they heal.
7. Jan. 2006: With this new drug, I can be whole again. Miracles do happen. I won’t even need a cane, I will be strong again because I will work hard at it.
8. Feb. 2006: I don't care if it's working, this is NOT living. I am quitting the drug.
9. May 2006: Those people don't know anything. I do NOT have a second type of cancer, I would KNOW if I did. This one is just responding weird to all these new drugs. It might even be a good sign.
10. May 2006: I just want my eye to stop hurting.
11. May 2006: I just want my mouth sores to heal, I just want this dry feeling to go away, I want to be able to eat and taste again without pain.
12. June 2006, the last week, in hospice: Just get me out of here. Why does it hurt so much?
13. June 2006, the last two days: You say you want to help, but why am I still in this place?
14. June 2006, the last 12 hours: Silence, but struggle. He seems to be sorry, seems to reach toward my touch. But I'm projecting, he hasn't been here for hours. I play Joni Mitchell and Leonard Bernstein instead, stupidly, of Patti. But it's not him. It's just barely him. Now it's not even that.
I am fascinated with this paradox of denial, of death in life. I feel like Oedipus who by knowing, for seeing, had to remove his own eyes, but stay in the world with that injury, the loss, the knowledge of that guilt.
We lived these beliefs and they flickered and changed every day. Looking at death so steadily, and only seeing glimpses, and not sure whether I wanted to see or not. You can't look straight at the sun. Come into the light. You can't fly at the sun with wax wings. Your soul will be free.
I look back at the bloggers with dying spouses and what they thought and did in the months and days leading up to the "event." I compare, I contrast, but I'm in a fog, part blind. Was the therapist right -- were we typical? Does that matter? Could we have done it any differently? How do you stay together when one of you is leaving?
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Walking through these deaths and grieving experiences again, so similar to my own, may be contributing to my general Christmas drear. Of course it doesn’t help that I am itchy, my eyes since August, my ankles acting up now and then, and headaches that may mean I’m now a migraineur. (Another club that no one wants to join.)
One thing I’ve been fascinated with is the cancer denial. Gavin really did not think he was going to die; Kubler-Ross says they all do. And basically, I knew he would. I felt he was always too optimistic. I had married a man 20 years older and we’d had other health scares. But we had a peculiar balance, between the two of us, between seeing and denial, between wanting and knowing, and it changed all the time.
Shortly after his death I went back to the therapist he and I had seen a few times during his last 6 months. We had seen her in 1999 after he’d first “died” in the kitchen and I’d had a one-night-stand affair. We were in the middle of our 8 year struggle/indecision about infertility and the anger was so close to the surface. That counseling probably saved our marriage -- we came out the whole deal stronger. She thought he was charming, even when he used the Simpsons line, “And I’m an excellent husband” in session.
After his death, she offered me a few sessions, free, whenever I wanted them, to help “close things out.” She felt for us, and the things we were trying and she knew they were not settled. It took me nearly a year to take her up on it. Seeing her alone, remembering the sessions and where we were in our minds, where we met and where we tussled, was so helpful. After three sessions I was very grateful to her; it had truly helped.
What had helped? To see how different we were. To know that someone else saw us not on the same page, and it was normal, and it was okay. To have someone else acknowledge how much that was hurting me. To have someone say I had done everything I could, that I had nothing to feel guilty about, even though we couldn’t be a perfect team in this one project.
After those sessions, I wrote up this chronology of our ideas about dying.
Basic chronology and how I thought about his death:
1. 1999, When he fell (defib #3 and device initial failure): Oh God. Not yet, please. NO!
2. Sept. 2004, At diagnosis, “Oh honey. It’s cancer”: Oh God. It’s here. How do we want things to end? Make peace with everyone. Be kind. Be together. Quit my job. Find meaning and never do anything I don’t want to. Touch. Don’t let go of my child. Intense shock. Awe. Sadness. Always knew it would come first for him, but not now, not when our child needs us, not when everything is in flux, let’s say goodbye first and settle everything.
3. Oct. 2004, Dr. Schmaltz: We’re learning about how to deal with this terrible system, but since Gavin is feeling well and we seem to have some options, death seems pretty far away. Then again, what we don’t know scares us, so we only look one step ahead. An important survival tactic that lasted a long time.
4. Nov. 2004, first surgery: He could beat this, but the end is closer than I had hoped.
5. Jan. 2005, looking forward to IL-2: This could work, even if it did, the disease could recur, but would buy us a few more years.
6. Feb. 2005, rejected from IL-2, take low dose IL-2: This could buy us some time, but not as much.
7. Oct. 2005, spine about to collapse, insensitive doctors: How did those assholes miss this. He could die from their negligence. The surgery offers increased quality of life for however long he has left. I know he is going to die.
8. Oct. 2005, during the second surgery: He’ll pull through this but it’s brutal now. Is it worth it for increased quality of life for a little bit of time? (Maybe a year).
9. Oct. 2005, lost X-rays delays radiation treatment by 3 weeks: Those assholes! They are taking MONTHS off his life.
10. Nov. 2005, recovery and radiation. He’s having fun finishing paintings for a show. He’s taking good care of himself and having fun with SS, but very fatigued. He is not on treatment. Sense of dread. We are trying not to look.
11. Dec. 2005: anticipating Nexavar. Real hope. He could get another year of good quality of life and do some work and have some fun. We could say goodbye leisurely and just.
12. Jan. 2006, on Nexavar: Thank God it was approved. But he is so unhappy. If this works, this could be the miracle, but will he be happy enough if “this is life” on the drug?
13. Jan. 2006: He thinks the drug can cure him, but it won’t rebuild that part of his spine that the tumor ate; he will always have a cane.
14. Mar. 2006, follow up about spine about to collapse again (one strut of prosthesis broken): Insensitive, incompetant, lazy, awkward, covering-up damn doctors. You fucking jerks. I wish we’d never met you.
15. Apr. 2006, not letting anything slippery on the floor, with a 2 year old and no other able bodied adult ever around: If I can keep him from falling, things might be okay. Dealing with disability, pain, the prospect of another reconstructive surgery when the first one failed and nearly killed him, he couldn’t take any chemo while recovering. This was the thought – not death.
16. Apr. 2006, anticipating Sutent: It’s not as powerful a drug. Maybe it will give us a few months. Nexavar worked great – marked reduction – but new tumors growing.
17. Apr. 2006, Kat visits for a lovely, sunny afternoon: Much later, she observed that death was present then. I asked her if death was like the elephant in the living room. She said, no, it was more like a kitten. Every now and then, it would need attention and one of us would reach down to pet it.
18. May 2006, possibility of second primary: These things are so much larger than I ever imagined. Can’t deal with learning about and advocating for another cancer. Please don’t say “lung.” I’m ready to give up, can I die too? I could. I know I can’t stay here and do this again.
19. May 2006, on Sutent. Please bring us a few more months with no symptoms that ruin life at the time.
20. May 2006, shingles, thrush: Oh God. Are these nuisances or signs of immune system collapse and the impending end? I am angry at him for quitting Nexavar, what is life in bed compared with death? He is not being reasonable given the choices before him.
21. May 2006, we take a desperate, spontaneous vacation in WV, SS scratches his cornea: I tried to make things nice, but there was not that much I could do. He was in pain from this minor, minor injury done by his greatest love at a fighting bedtime. He was helping me by helping to put her to bed.
22. May 2006: I am pretty sure he’ll make it to his birthday (July), but possibly not to mine (Sept.), and not to our tenth anniversary (Oct.).
23. May 2006, the last two weeks (“The mediastinum is….full.”): That’s no big deal. We already know that. He’s been coping with these same challenges for almost two years. I don’t know what death is or how it could or would happen. I don’t understand what’s happening despite a sympathetic doctor and many explanations. I don’t believe it, I don’t listen, I don’t undertand, I get lost in details. Agree with Gavin mostly, but still know I have to hide some things from him. Mixed feelings about doing this.
24. May 2006, the last week: I can do something. I bet there are still treatment options that would make things easier. Perhaps I can get a few more months out of him. He won’t be happy living in bed, but it’s fine with me, who cares what he wants. We'd be able to say goodbye.
25. June 2006, the last two days: I tell visitors to “Tell him you’ll take care of us and that he is free to go if he needs to.”
26. June 2006, the last hours: I can’t do anything. He deserves peace. I want him to be happy but I want him to be here and I can’t do that. Too bad he believes there’s nothing beyond. I know death is real and forever.
How I think he thought about death at different times.
1. Sept. 2004: I will live to see SS’s first soccer game. (So I was reluctant to even let her kick a ball as an infant).
2. Oct. 2005, Dr. Schmaltz: If you think I am just going to give in, you are wrong.
3. Jan. 2005: I will be around for 22 more years, MINIMUM.
4. Feb. 2005: I will see SS graduate from college.
5. Feb. 2005, rejected from IL-2. Nonsense. My heart is perfectly fine. The doctors don’t know my body.
6. Oct. 2005, after reconstructive spine surgery: This is the hardest thing I’ve ever done. I always win out of sheer dumb persistence with blunt tools. Blunt determination. I’m stubborn. My body is amazing. God made it right but with cracks, but they heal.
7. Jan. 2006: With this new drug, I can be whole again. Miracles do happen. I won’t even need a cane, I will be strong again because I will work hard at it.
8. Feb. 2006: I don't care if it's working, this is NOT living. I am quitting the drug.
9. May 2006: Those people don't know anything. I do NOT have a second type of cancer, I would KNOW if I did. This one is just responding weird to all these new drugs. It might even be a good sign.
10. May 2006: I just want my eye to stop hurting.
11. May 2006: I just want my mouth sores to heal, I just want this dry feeling to go away, I want to be able to eat and taste again without pain.
12. June 2006, the last week, in hospice: Just get me out of here. Why does it hurt so much?
13. June 2006, the last two days: You say you want to help, but why am I still in this place?
14. June 2006, the last 12 hours: Silence, but struggle. He seems to be sorry, seems to reach toward my touch. But I'm projecting, he hasn't been here for hours. I play Joni Mitchell and Leonard Bernstein instead, stupidly, of Patti. But it's not him. It's just barely him. Now it's not even that.
I am fascinated with this paradox of denial, of death in life. I feel like Oedipus who by knowing, for seeing, had to remove his own eyes, but stay in the world with that injury, the loss, the knowledge of that guilt.
We lived these beliefs and they flickered and changed every day. Looking at death so steadily, and only seeing glimpses, and not sure whether I wanted to see or not. You can't look straight at the sun. Come into the light. You can't fly at the sun with wax wings. Your soul will be free.
I look back at the bloggers with dying spouses and what they thought and did in the months and days leading up to the "event." I compare, I contrast, but I'm in a fog, part blind. Was the therapist right -- were we typical? Does that matter? Could we have done it any differently? How do you stay together when one of you is leaving?
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12.08.2008
A Less Urgent Blogger
I'm somewhat ashamed to be using this immediate, vivid, fast format to process things that happened several years ago. I'm jealous of the urgency of some bloggers who tell the truth about their daily lives each day, and get feedback on what to do. People who make real friends around them in fake space. Women with book contracts and Moms with ad revenues.
I'm almost certain my "new normal" life is going to be boring, and I hope it will be so for a long, long time. I plan to improve myself and raise my child, and remind my inner child it's safe outside.
This life is no story, compared with the horrible medical mishaps and misaligned relationships while my husband was dying -- or the tales of virtual sexual dysfunction spawned by my brief, thrilling foray into the world of 40-something single men.
Now, THOSE are stories. And they will come. I will write out the buried wounds, I swear, as time passes. In the meantime, be patient with me (since I'm not patient with anyone) and come back another time.
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I'm almost certain my "new normal" life is going to be boring, and I hope it will be so for a long, long time. I plan to improve myself and raise my child, and remind my inner child it's safe outside.
This life is no story, compared with the horrible medical mishaps and misaligned relationships while my husband was dying -- or the tales of virtual sexual dysfunction spawned by my brief, thrilling foray into the world of 40-something single men.
Now, THOSE are stories. And they will come. I will write out the buried wounds, I swear, as time passes. In the meantime, be patient with me (since I'm not patient with anyone) and come back another time.
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12.07.2008
Three Girls, and You Can See They Tummy
SS asked me, "Play that song, I was dancing to it with Nellie."
What song is it?
"You know, it go, '(unintelligible) girls, (unintelligible) girls' like that. A girl singing."
I look back and the last played is "I love the nightlife" and then "Call me." At least they are girls singing.
"That not it. Let me see the picture."
That's the other iPod, this one doesn't show the picture.
"YOU KNOW IT! It three girls and you can see they tummy." I was sure it was some teeny-bopper thing, but there is so much stuff on there, and her temper was short, so I gave up.
When Nellie next showed up, we had the answer -- "Typical Girls" from:
.jpg)
I should have known. It was my favorite when I was 16, Nellie's age.
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What song is it?
"You know, it go, '(unintelligible) girls, (unintelligible) girls' like that. A girl singing."
I look back and the last played is "I love the nightlife" and then "Call me." At least they are girls singing.
"That not it. Let me see the picture."
That's the other iPod, this one doesn't show the picture.
"YOU KNOW IT! It three girls and you can see they tummy." I was sure it was some teeny-bopper thing, but there is so much stuff on there, and her temper was short, so I gave up.
When Nellie next showed up, we had the answer -- "Typical Girls" from:
.jpg)
I should have known. It was my favorite when I was 16, Nellie's age.
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Why Wednesday, and Why in your Kitchen?
Because we're getting married soon, for tax reasons, and that day, at the minister's convenience, and in our kitchen, so we don't have to call it a "rental" and pay a fee.
Today's sermon was a funny, snarky one on marriage whence this quote from Kahlil Gibran:
I like that it mentions the temple, so it sounds a little bit Jewish!
ADDENDUM: Turns out that quote was posed, in the sermon, as one of the BAD attitudes about marriage. I was too moved, busy writing, to listen to the commentary! And yes, that is my beloved minister performed the wedding, with that wording and all.
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Today's sermon was a funny, snarky one on marriage whence this quote from Kahlil Gibran:
Love one another, but make not a bond of love:
Let it rather be a moving sea between the shores of your souls.
Fill each other's cup but drink not from one cup.
Give one another of your bread but eat not from the same loaf.
Sing and dance together and be joyous, but let each one of you be alone,
Even as the strings of a lute are alone though they quiver with the same music.Give your hearts, but not into each other's keeping.
For only the hand of Life can contain your hearts.
And stand together yet not too near together:
For the pillars of the temple stand apart,
And the oak tree and the cypress grow not in each other's shadow.
I like that it mentions the temple, so it sounds a little bit Jewish!
ADDENDUM: Turns out that quote was posed, in the sermon, as one of the BAD attitudes about marriage. I was too moved, busy writing, to listen to the commentary! And yes, that is my beloved minister performed the wedding, with that wording and all.
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