O voi che siete in piccioletta barca

I have never before gotten drunk in order to get writing. Well, never successfully. But I needed dynamite, a wrecking ball, a crowbar, something. We’ll see if my prescription dexmethylphenidate keeps things moving through the alcohol.

I am finding it increasingly difficult to bear what I see when I click down at the bottom right of the screen, when I click on the time. July 12 has a row after it, on the calendar, a week-row, between us and then, with another one mostly built… July 12 is being borne back into the past, into yesterday’s news, into things ago. Which means Gwen’s death is, which means Gwen is.
When I stare at that, I imagine Gwen sitting in a dinghy that is being towed behind our ship with the bright-lit deck as we travel through all this endless dark – and the rope is getting longer, being let out more, she is riding further and further back in the darkness…
That rope cannot get longer.
I want to shout angrily, No, she is crew! My crew.

***

Nothing is finished.

The one thing I know about my few experiments with drinking and typing is that I must not delete anything. Let’s go.

Remember that image, back there. I mean more by it than just the one thing.

***

Responsibility is more important than reality. Responsibility requires acting provisionally – you’re responsible not just for what you think is, or what you think will be, or what you’re sure of about either, you’re responsible for what may be, the may-bes that would matter. Is this that entry? No. Not yet.

This is the other necessary entry.

I need to talk about the last days with Gwen.

So.

I want to talk about light.

When they brought Gwen up to her final room on the seventh floor in the towers of the Cancer Center, to the lovely spacious room good for having visitors and with the great slightly curving windows along the wall looking north over the trees of the city, I was afraid. Down in the little room in the ICU there had been sunlight splashing in in the morning. Here the windows faced north. So the wall was like a bright screen, but no sun came into the room. My girl in a last room with no more sunbeams. Ever.

I thought about it and told Gwen that if she wanted I would raise a ruckus and get her moved to another room on another face of the tower. But Gwen’s dad said the sun would come in in the morning and evening, and he was right – we were far enough in summer and we’re far enough north that in the evening the sun came slanting in, and Gwen watched the sun set like a deep red fireball on the horizon. In the morning the sun washed the far side of the room from her bed.

The light had dappled on her face, a reflection of a reflection, down in the ICU when she had sung “Day By Day” for the pastor. Her sweet face smiling up at him. The morphine had helped – oh, I could sing the praises of morphine, the difference it makes. Before they started her on morphine, in the ICU for the first two nights and one day in between, there was no longer that smile on her face, there was just her with the half-open eyes (she has always napped like that, disturbingly, but it had grown) and with the vague look of … horror? pain? certainly pain, because she kept asking to be moved, turned, moved from the bed to the chair and back again, it kept hurting… I had been worried that she was going to die very badly. But the morphine eased things, and she could breathe better, and there was her little smile. I was wrong when I wrote that I would never speak with her again, although her speech would grow shorter and briefer over the days to come.

And she was saying the right things. Always caring for people. Up in the high room they took her to die, when I asked if she wanted me to put on The Lord Of The Rings, her DVD set I had brought for her, she was worried that it would interfere with someone on the other side of the room who was on the phone…

Her last room. Her last many things. Most of the last things had already happened, before she had known they were lasts. Her last time driving; her last time eating in a restaurant, where I took her, her mom dropping us off and picking us up, where I bought a range of appetizers to try to get her to eat and she actually ate a bit; her last real meal at all, which might have been that or a very little after; her last time able to get up without help… I had been with her on her last walk, the very last time she ever walked, in the late afternoon when I got her up out of the lounge chair in the living room so that her mom and I could take her to the emergency room, me pulling her up by her forearms, and then in the garden she walked from one stool to another down the front path and down the plant-filled driveway, her mom and I moving the stools stepwise along the beautiful flower-lined path so that she could sit down on each and then be helped back up, until she determinedly ignored the chair at the table at my mom’s front gate and walked on past it and all the way out to where her mother had opened the passenger’s-side door of her car.

***

When I was getting her out of the chair to take her to the hospital, with her mother outside, she muttered to me, “This is crazy, but I could use a whole bunch of whisky.” I laughed.

***

A little earlier, before Gwen’s mother, a retired longtime geriatric nurse, decided that we were taking Gwen in to the emergency room – and a good thing too, because we did not know that Gwen was crashing and would not have made it till morning – I had found myself talking to a semiconscious Gwen about dropping her current online class. I had been struggling to play typist and talk-it-over partner for her for her discussion questions she was supposed to do, and it had become finally clear for the first time that Gwen couldn’t do it, she was unable to wake up and focus on the material. Everyone in the class was doing little pieces on the topic and then posting a required number of discussion questions about each other’s, and one person had been a little snarky, probably justifiably, about the somewhat desperate contribution that Gwen and I had thrown together the previous day, and there was no question of Gwen being able to engage or to respond or defend herself… It just wasn’t working.

She agreed, and together we wrote two emails (her saying things, me typing and expanding) to her prof and to her class teammates apologizing for having to quit and explaining.

Yet it had only been a week, or a little more, since Gwen had been worrying that she should drop her MBA courses, because she didn’t know if she would be capable of continuing school once the chemo was hitting her, and her mom and I had been reassuring her, telling her, no, you don’t need to decide that now. Chemotherapy doesn’t hit everyone the same way; these are online courses on your laptop; you don’t know what you’ll be able to do. Just see how things go. You don’t need to try to outplan completely unknown developments two months in advance.

There was no chemo. The morning that the doctors were only supposed to be telling her about her PET scan results and giving her their treatment plan for the autumn was the morning that the oncologist told her in the hospital that he had been trying to go easy on us the day before when he said “weeks,” that really it was days. I think that we’d have been camping along theCrooked River on the exact day that they lowered her into the ground, by our plan just from the beginning of June. The time was like a brass telescope closing up… helped with a sledgehammer.

***

I know new things now about physiology. There are muscles, somehow, virtual or real but tangible, that you can use to pull back tears when they have to come but when you’re with the person you have to be brave with. Pulling back the tears feels just like hoisting anything heavy. After a while I thought my temples were going to start to bulge like a weightlifter’s pecs.

With grief the in between moments are clear, and you think, I’m dealing with this all right, I’ve found my balance, and I can keep it as long as I don’t move my head, as long as I keep perfectly still. Then the knowledge grows through your jaw and cheeks first, suffusing them, feeling like a horrible blush, and then stabs in through your eyes.

***

I read “The Great Collision of Monday Last” to her. Then I couldn’t find any other stories of reading size in the anthology I had.

I’d rather have been with her. Everything was good when I was with her. The loss would hit when I was riding home, to change my shirt before it went critical, or something. When I was with her… I was with her. I was still seeing her off. I wouldn’t have been anywhere else.

I brought in the song “Book of Love” by Peter Gabriel on our MP3 player and put the earbuds in her ears. When she heard it she smiled and said, “I was wondering!” The way I was with her then had nothing to do with the weeping, raging lunatic at home who had torn the device’s playlist and his computer apart so that he could be sure, sure that that song was on there.

Sweet moment of sunlight. Then into the sky to die.

***

When the oncologist had told us everything in the ICU room he asked if he could do anything else. I said the business about keeping her head alive on life support with prosthetics as a joke, and he laughed. Then, at the end, I asked if I could have a word with him outside the room – I had to, I could not have said nothing, the occasion was Gwen. I said it could have nothing to do with Gwen, of course, but I asked him about technical prospects for the future for doing that with other people, because the thing was that Gwen’s brain was fine.

He responded as well as I could have expected. Which means he put his hand on my shoulder and told me, “These feelings are perfectly normal.”

The question itself… well, you could see it sliding off the transparent intuitive shell; slight condescension, if he’d been being condescending, which he wasn’t. Like I say, it was the best I could have expected.

***

Gwen tried to help us. She blurrily gave the names of a couple of people who might be able to help with funeral arrangements – two people in her small group, the counseling group at her church – Nicole, and Kelley who worked at a funeral home. She said the numbers were in her phone. Later we couldn’t find hints in her phone, so we asked around until her pastor told us who Kelley was, and Kelley was a great psychological help for me in telling me about how dealing with funeral homes worked.

***

All the people at the hospital and then at the Cancer Center (the two are connected, semi-joined buildings) were so nice.

They were also affected by Gwen. Up in the tower Gwen’s mom overheard a group of doctors in the hall talking about Gwen – the doctors were actually tearful, and were saying that they had never seen such a heartbreaking case.

Gwen impressed the Cancer Center!

(The only exception I can think of wasn’t bad, he was just amusing to me – the stick of an ER doctor who you could tell was kind of Asperger’s or something, working with a rather rigid decision tree in his head. He gave us the first confirmation of the oncoming truly dread possibility when he came back in to the ER booth frowning at the chart in his hand, having talked to the oncologist, and said, “You know this is a liver-involved cancer, correct?” I had to grin, though you’d have thought grinning would be out of the question: no, we hadn’t till that point. Although Gwen’s mom had suspected. And there had been the slight tinge of yellow at the corners of Gwen’s eyes that I’d noticed I think the day before and had told Gwen’s mom about, who had just nodded, which is when I knew that Gwen’s mom wasn’t saying everything.)

***

I told Gwen, “I am so lucky.” To have her. To have had her.

I told Gwen, “I wouldn’t have missed a day.”

Little smile. Breathy voice.

The most beautiful moment of faith I ever saw was when Gwen sang “Day By Day” for the hospital pastor, smiling up at him.

***

There was a tray table in that spacious final room that had a label on it that said VIGIL TRAY. I was exasperated by it, amusing Gwen’s mom; I wanted to throw it out the window. The tray had pieces of fruit on it. Do you want your Bereavement Banana?

***

Gwen’s dad flew in as soon as Gwen’s mom called him and told him it was liver-involved. He was afraid he wouldn’t get there in time.

He is a Strong Christian. He sees it, the truth of the Bible. He gave me this great talk about it in the corner of Gwen’s big room, wanting me to be saved, wanting me to know that Gwen was saved and would be safe in Heaven. He said, trying to reach me, “And I know you’re a thinking man.”

I said, “Bad moment to say it. I’m the idiot who can’t figure out how to save his girlfriend.”

That has continued to be my reaction, as the surreal has continued. A thinking man?

Seriously?

***

When I was at home, the time I got a shirt change and went mad trying to find “Book of Love”, I checked the Caringbridge at home and read Gwen’s mom saying that they were going to take Gwen home and bury her with her two infant siblings.

I had talked with Gwen about it a little in the ICU that morning, about where she might go, and I had said that I would let her parents decide, and then I had talked about the Rose City cemetery that she had loved exploring with me, or the pioneer cemetery on the traffic-island hill where we had found the dead children.

I decided that, though I would certainly let her parents decide as I had said, I could still ask them, “must it be so?”

I did when I got back to the hospital and found them up at the new room in the tower. I took them into a side room to ask.

I don’t know what Gwen’s mom would have said on her own, but Gwen’s dad said that it didn’t matter to them where her body was, that she would be in Heaven. I said – and I wonder if I will ever get used to saying so much in tears – “I just want somewhere where I can go and tell her I’m still holding it together.”

I think that did it for Gwen’s dad. He gave me a big hug. They said we would ask Gwen, and if Gwen couldn’t decide we would talk about it again. We asked Gwen. Gwen’s parents and I each told her it was okay with us whichever she decided. And it was.

We didn’t know if she would be awake enough to be able to decide anything.

But later she told her parents that she had thought about it and that she would always love Hibbing but her heart really was in Portland. So she chose to stay here.

Thank you, Gwen.

Can’t frotting type if I can’t see.

***

She wanted to stay until two friends had had a chance to reach her and say goodbye, her oldest friend Liz from Hibbing, and our great friend Christy who lives in Philadelphia. Both were flying in, but when the doctors said to us “preferably today” suddenly it was no sure thing.

Christy moved up her flight. Gwen and I had a phone conversation with Christy from the ICU room that we said we had better call the “goodbye” conversation just in case, although we had the option of having a series of phone conversations each of which we could call the “goodbye” one. The charger wasn’t there at the hospital yet, so we talked until the cell phone died. Gwen could still talk a little then.

***

Things I have seen – there’s a new entry in the big list. I have seen the urine from my beloved, coming from her catheter and going down in the big tube to the bag under her bed, when that urine is the dark exact color of orange candy. It is bad to see that wrong color, to contemplate it, to know what it means.

***

Ernest Hemingway (the joke says) on “Why did the chicken cross the road?”

“To die. In the rain.”

Although the summer weather all through this time was absolutely beautiful. The best summer weather we’ve had in years.

***

There is a spare day in here that I’ll say little of, because it was just everything – giving Gwen sips of water or bits of ice, shifting her, talking.

Now and then someone related to the family, or who knew Gwen, would come in and visit.

That evening, Gwen’s counselor-small group leader Susan from the church came in, a very emotional, heart-on-sleeve woman, and we all talked and had such a good moment celebrating Gwen around her bedside at sunset, with Gwen looking around at all of us, that I was afraid that it was too good, that it would be like an exorcism and we would send her off into the light right then.

I played Susan the song I had brought in for Gwen, on the earbuds, and nearly wrecked Susan. Susan said several times how she was raging at God, and, though you have to believe in God in order to be angry to God and so I’m not really in the game, I found that I did like the sound of believers being angry at God. I liked it very much.

***

I pointed out to a nurse the treble-clef scar Gwen had made on her ankle.

***

There are two “twinned” songs by The Handsome Family, “If The World Should End In Ice” and “If The World Should End In Fire.” Gwen loved them as much as I did, and we loved to bellow them out when we’d had a couple of good beers.

Before we went to see the oncologist for the first time after we got her biopsy results, I sang the first with her – well, mostly sang it alone, she had to run to the bathroom to pee in the middle.

I sang the second to her, softly, in the hospital.

***

In the ICU one thing she had been able to do was to shift (be shifted) from bed to a chair arrangement and back. Up in her tower room they didn’t have chairs like that, so they had to hunt for a while. Finally they got one and she tried it… She slept in it for a half hour and then woke up in great pain. They shifted her back to bed, and that was that. Not only was that chair thing not working, but it was a last chance at agency for her, at choosing something – and a last chance to leave that bed – and it didn’t work out.

Even with the morphine, the pain continued to be a problem, requiring movement. It was a pain that she lay on endlessly…

Mostly it was just that her vaginal tumors were right next to her tailbone, and the combination… well. And Gwen was too physically weak to move herself.

I will tell about the first night in the tower room, or the second night, I can’t tell anymore.

The couches folded out into cots – which were extremely uncomfortable, as if they were designed for nurses to catnap on who had to stay vigilant and get up at any time. Still, Bill and Grace (I may as well name Gwen’s parents) managed to sleep on them… And Gwen was having trouble. And there is no feeling more doofus-helpless than the boyfriend who doesn’t know how to shift his big girlfriend in her hospital bed! Grace and the nurses had the moves. There is a whole jujitsu with the sheets and things.

So Grace was awake for a while and doing it or helping the nurses do it, but then she was solid asleep with Bill on one narrow cot, God knows how, the lights turned down to dim in the room, and Gwen was still having problems. I fussed about the bed. The nurses were slow coming in response to the button – they were busy, there was coding down the hall, and then there was a shift change… And then they came and moved her – and then she still had problems. I woke Grace up once to help turn her. And then the nurses came again, and put cream on her butt to see if it might help, and turned her, and…

There was a moment when I said to Gwen, “Is it me, or is this just like labor except in reverse?”

Gwen nodded.

“Damn. They got you anyway.”

“Yep,” said Gwen.

***

As time went on on the third day in the tower room, Gwen grew less and less able to stay awake. We had been trying to feed her, with little success. God, it had been how many days since she had had an actual meal? A week? On the day before the last I brought in some mango sorbet and she ate a whole lot of spoonfuls of that… I should have thought of it a week earlier.

In the ICU she had had a lot of IVs in her arms, giving her more blood, giving her more fluids. In the tower room it was hard to look at the fact that the only IV in her was the one for the morphine. The calcium, the hemoglobin, any of that… they were just letting those things go. Even the water was just what we could get Gwen to drink.

***

“Are you in pain?”

Even the nods were getting few. Even when she was awake. If and when it was awake; sometimes she would seem to wake up, and look around strangely, and move her arms. The morphine, and who knows what was or wasn’t in her blood anymore. Just her expression we had to guess at.

At one point, me: “I’ve heard you talk to the nurses. I know you can talk to me.”

“… Sorry…”

***

She had nasal tubes for oxygen. But she was mouth-breathing… Later I read that the nasal tubes for oxygen are only recommended for stable patients, just because how the person is breathing makes so much of a difference. When the oxygen matters, when they’re trying to save someone, they use a full face mask. With Gwen they were steering on the side of what she wanted, and she had told them she wanted to be able to talk to people. To say goodbye.

Liz got in around noon, and Gwen was mostly unable to rouse. We talked. I was frustrated at one point because Grace was talking about something with Liz that Gwen had disagreed with her on, and I was in less of a good position to talk about it, but Gwen was over there unable to speak. It would have mattered to Gwen.

The Lord Of The Rings was on part of the time. When I had put on The Fellowship of the Ring she had weakly asked me to put on The Two Towers instead, because she had been watching the first at home. But… she was really unable to watch any more.

***

Me, in tears, asking her again about pain… See, Gwen always said, “I feel like”. I used to gently tease her about it, tell her to say, “I think that” or “I feel as if” or “it seems as if”.

Me: “You’re always telling me what you feel like. Tell me again…”

***

Christy would not be in till nine p.m.

We kept telling Gwenthat Christy was just three hours away. Two hours away. One hour away. Gwen just breathed, with her natural pink still strong but modified by the growing pallid yellow of the jaundice.

An issue had been growing… all of us were showing the effects of vigil fatigue, and I was increasingly dully distressed that Gwen was surrounded by all us sad zombies. I wouldn’t have had that for her. But none of us were in a position to change. When Bill and I left to go and pick up Christy in the evening, we were all used up. I was staring out the window at the most ugly, pointless Portland imaginable, and could barely even be bothered to give directions. Bill never touched his horn, and I have no idea why; he was looking at and talking to a sea of stupid drivers.

Thank God for Christy.

Christy shows up, she is “sassy” on two feet, and her suitcase is, well, a big pink tank. No man will ever steal it, and it’s visible at baggage claim a hundred and fifty feet away. In the car, creakily at first, the joking starts. Christy says that “big pink tank” is the perfect shorthand to describe her, and I tell Christy she should be careful what she puts out in the air… Christy was like a jolt from electrodes at the temples. Even if she’d been irritating she’d have brought us back to life.

So I grabbed the big pink tank when Bill left us off before parking and we wheeled the big pink tank all the way up into the Cancer Center.

And when Grace told Gwen that Christy was there, Gwen pulled herself out of the morphine haze.

She grinned at Christy. She laughed at her Bill Ingvall joke. Christy showed Gwen the big pink tank, and Gwen gave her a thumbs-up. The best moment, that thumbs-up.

And that put us all into the delirious side of vigil fatigue, and it was almost a party in there for a little while! Enough that it was fortunate that the door of the room was nice and soundproofed, as one of the nurses helpfully advised us.

***

And that was the last night, and you know what happened in the morning, so this is a good place to pull over for now.

Log in to write a note
July 26, 2012

sharing this all must be cathartic. you’ve saved it all outside of OD, right? backed it up & backed it up & backed it up?

*hugs*

July 26, 2012

Having returned here to OD to record the event of birth I am saddened profoundly by the death of dear Gwen. I have little to say but my profound sense of loss and gratitude for the magic of your presence in her life. As one who found faith and its community late in life I remember both the time before belief and after. In the face of a peaceful death I have twinges of ambivalence and yet pray for her, you and her family and friends. Ciao,

i am alternately happy about your last night, and distraught that i had no way to join you all. thank you for sharing this. thank you. and when you visit her…can you PLEASE do something for me? PLEASE. i’ll send you the $ to do it — i’ll need your address again — but. could you find a copy of the dixie chicks first album, like, at a second hand music shop, or something…and also, a daisy? a white one. could you bring those to her? <3 i can’t thank you enough for sharing this. i love you.

I found this a hugely moving entry; alcohol certainly didn’t lessen your clarity or punch. I’m with Pulchritude; I hope you have already saved this, and backed it up, so you can come back to it when that rope to the dinghy has lengthened more, when the memories of laughter and of song are fading. RYN: I was touched that you made the effort to note. Please don’t feel you need to; grief has its own time.

i care.

July 27, 2012

*sits quietly with you*

July 29, 2012
July 31, 2012

My heart aches for you…

August 3, 2012

I’m sorry just seems so trite. I’m glad you were all there for her. I’m glad she was in your life. I’m sorry it had to end too soon.

August 6, 2012
August 6, 2012