The sidewalk speaks

I was walking to the library on a sunny day last week — sunny enough that I chose my route for shade. Usually I walk through Cal Anderson Park, enjoying the atmosphere of children running around on the playground, people frolicking in the water feature, sunbathers, groups of friends talking. But it looked hot over there, so I skirted the park, staying on the tree-lined street. As I prepared to cross the street, the corner of the sidewalk said, "Hi soulmate."

I don't think Sandy has personally wielded any chalk lately, and I know that message was seen by hundreds of people that day. But it delighted me. I said "Hi back!" cheerfully, and continued on my way.

I walked home a different route, running some errands as I went. So I was heading home on 15th an hour or so later when I saw "You are loved." Again, I smiled. And, honestly, felt loved.

I don't know who it is who is spreading benevolent messages all over the sidewalks of my neighborhood, but if I found them, I'd give them a big hug. Every few days now, I run across a message that lifts my spirits; I literally feel my heart lighten.

Recently, there was a whole series of messages along the sidewalk. First, I saw "Yawn. I need coffee." A few feet further was "Yawn. I need you." Around the corner, I saw "I miss looking at the stars" and a little later, "Come lay with me in the grass." They feel very personal, if sometimes ungrammatical. (I resisted the urge to cross out "lay" and replace it with "lie.")

If I see someone sitting on a dining room chair, typing the
names of her flowers on her laptop, I'll have no doubt it's
a message meant just for me!

Yesterday, the message was "My arms miss you."

I don't know who the author of these missives is addressing, but except for the reference to coffee, they could all have been written by Sandy. Some kind soul is either channeling her (including the misuse of the word "lay" — she always fumbled with that), or has a knack for giving me exactly what I need. I haven't yet seen one that felt superfluous. Even the coffee mention was such a clear set-up for the next line that it worked for me. 

My walks generally cheer me because I enjoy the energy of my urban, youthful 'hood. Now I also look forward to discovering whatever new message awaits me, trusting that whatever route I take will be the one with the words meant for me.

Appreciating visitation dreams

I've been doing better for several days now, on a much more even keel. I suspect some of my anxiety a week ago was a reflection of the anxiety I felt in the week after Sandy died. Nothing was normal or routine that week as I worked my way through difficult death tasks while Tonia was here with me. Tonia was a tremendous support at a time that I desperately needed her. When I was ready to be on my own in the house, though, I returned to a more routine schedule and could start to remember the life Sandy and I had shared just six weeks earlier.

It also helps that Sandy came to me in visitation dreams a couple of times recently, and that she's been in my non-visitation dreams frequently. Even those manifestations of my subconscious help, because seeing her, even in the bizarre circumstances that are often present in the dream world, gives me the comfort of having spent time with her.

There's one visitation dream I thought I'd share here, though, because it amused me. Having recently given up DirecTV and therefore TiVo, I've had to put more effort into obtaining my favorite shows and watching them; no longer do I just plop myself in front of the TV and ask TiVo what's available. Especially because TiVo was something Sandy brought into our lives very early in the service's existence, and because I associate the shows I watch so strongly with her, I've felt some consternation at the change in routine. But I've got things figured out now and kind of like the new set-up.

When she visited, I was telling Sandy all about it, excited that she was back and would get to see the seasons she'd missed of her favorite shows. For example, I told her that though she hadn't watched House the last few years, I thought she'd enjoy the series finale. She asked how I was watching things, and I told her I was using my laptop. And then I reminded her that I have hers in my office. She said, "Oh yeah, I found it." I said, "It's still pretty much as you left it. I've just used it to run beta software," and she replied, "You should get more comfortable with using it." I thought at this point she was going to say that she wasn't going to be around to use it; I was afraid she was going to tell me that she was leaving again. Instead, in classic Sandy fashion, she said, "I want a new shiny one."

I bought Sandy a laptop for her birthday in 2006, just before she started
grad school, and it became her constant companion until it fizzled
early in 2011. She tried to fix it, but the motherboard was toast. So she
bought a new laptop just a week before we left for vacation in May 2011.
She used it maybe a month before going to the hospital, and only
a few times after that. But a year later, I still feel tentative every
time I use it. It's still hers — until she gets a shiny new one.

Of course! If Sandy became part of the physical world again, she'd want a much better machine than the cheap one she bought when she was panicking about money and her old laptop failed. Especially after she'd just seen the beauty of my new MacBook Pro, which is the machine I use to watch TV shows now. Sandy would want a shiny new laptop of her own, as long she knew that I could make use of her old one in my work.

While any type of dream that has Sandy in it, that has us being us, has the potential to soothe me, visitation dreams actually bring her back for that brief window of time. The conversations we have in them are real and unpredictable, and she can be as cranky or as sweet as she wants to be. It's an amazing gateway and a tremendous gift.

Writing through trauma

Shortly after writing about self-talk yesterday, I found a book on hold for me at the library: The Secret Life of Pronouns: What Our Words Say About Us, by James W. Pennebaker. I'd been fascinated when I first heard about the research in the book. In particular, I was struck by the idea that we use the word "I" more when we're being deferential than when we're authoritative. (It's not quite that simple, of course, which is why I put the book on hold.)

Here we are with my friend Wendy, probably in the late 90's.
Wendy is one of the friends I used to take long walks with to
discuss and work through my childhood traumas.

I started reading as I walked home from the library, and long before I got to anything interesting about pronouns, I found research on using writing as a way of working through the effects of trauma. I've always used words to work through things that troubled me, whether it was during long walks and conversations with friends in childhood, journal entries, or letters. But I haven't known how or why it helps, or whether I benefit simply because I'm a word-oriented person.

Pennebaker and his colleagues have done some interesting and revealing research. They tested people who were suffering physically and emotionally, had them write essays about their traumas, and measured how much they benefited. They analyzed the essays for words that signified positive and negative emotions, as well as cognitive dimensions (and a whole host of other things). Here's what they found:

Over all, the more people used positive emotions while writing about emotional upheaval, the more their physical and mental health improved in the weeks and months after the experiment.

Negative emotion showed a different pattern. People whose physical health improved the most from writing used a moderate number of negative emotion words. That is, people who expressed negative emotion language at very high rates did not benefit from writing — almost as if they were awash in their unhappiness. By the same token, those who used very few negative emotion words did not benefit — perhaps a sign that they were not acknowledging the emotional impact of their topic. The emotional findings, then, suggest that to gain the most benefit from writing about life's traumas, acknowledge the negative but celebrate the positive.

That in itself was interesting to me, specifically as it relates to this blog. I started writing here in an attempt to better understand my own experiences and to force myself to write more coherently about them than I do in my journal, which is intended to capture my stream-of-consciousness thought and free my mind for other things. I read on.

The people whose health improved the most started out using fairly low rates of cognitive words [think, realize, believe, etc.] but increased in their use over the four days of writing. It wasn't the level of cognitive words that was important but the increase from day to day. In some ways, use of insight and causal words [because, effect, rationale, etc.] was necessary for people to construct a coherent story of their trauma. . . .

These findings suggested that having a coherent story to explain a painful experience was not necessarily as useful as constructing a coherent story.. . .

There is an important lesson here. If haunted by an emotional upheaval in your life, try writing about it or sharing the experience with others. However, if you catch yourself telling the same story over and over in order to get past your distress, rethink your strategy. Try writing or talking about your trauma in a completely different way.

This is exciting stuff. And it's similar to what I wrote about yesterday, in that much of my damaging self-talk is about telling myself the same story of hopelessness and loss over and over again. In doing so, I reinforce the pain instead of moving through it. So, no more of that. Instead, I'm going to try again to emphasize the positive when I can (easier to say today, when I've had about 48 hours of emotional stability), and to continue to mine my experience and Sandy's for insights and coherence. (And maybe some quiet Sunday afternoon, I'll run the blog through Pennebaker's online tools to see what the word count says about me and my process!)

Self-talk

Sandy had crappy self-talk. Her default comments to herself were demoralizing. Sometimes they bled into joint activities, as when we'd make a goof together and she'd say something like "Smarter girls would have thus-and-such" or "Better people would have blah blah blah." I'd push back, rejecting the implication that a simple error made us bad or stupid. But I didn't get to hear all the things she said to herself internally.

It still saddens me that she ever doubted her worth or how
much she was loved. You'd never know it from her smile.

She was chronically clinically depressed, and no antidepressants ever really did the trick. I don't know whether her self-criticism was a cause or product of the depression, but I was pretty certain that it wasn't helping. So I was thrilled when she came home from therapy one day and said, "Martha says we're going to work on my self-talk." (Though I've never met her, I adore Martha. She got through to Sandy in ways that I couldn't.)

My own self-talk isn't always supportive. In fact, it's often pretty dark. When I first realized that a couple of decades ago, I started talking back to myself. For example, if I heard myself say (out loud or just in my head), "I should die," I'd respond immediately, "No, I shouldn't." Eventually I learned to head the negative sentiments off at the pass. When I was ashamed about something, felt awkward or incompetent, or even royally screwed something up, I'd say, "It's okay, little Brie." I'd get pissed off if anyone else called me "little Brie," but somehow the words reminded me that I wasn't infallible and that that was okay. I told Sandy about it several years ago, thinking she'd find it foolish. Instead, she tried to adopt it, telling herself, "It's okay, little Sandy." She said it helped.

I don't know how much progress Sandy and Martha made on self-talk in the last months of Sandy's life. I know that it did wonders for her to see how much her life had meant to so many people, though. I think that overwhelming evidence quieted the negative self-talk in her final weeks.

I hadn't realized how grim my own self-talk had gotten again until last night. I'd picked up Spirited, a book by a woman who says she's a medium. I really like her, especially because her goal is to get others to listen to their own intuition and to find comfort and guidance from the spirits that surround them. She honestly doesn't seem to be trying to grab everyone's money.

Early in the book, she talks about her first experience with a spirit. Her grandmother suddenly appeared, through automatic writing, when she was going through psychological turmoil. The story is fascinating and not unlike some of my experiences with Sandy. But a couple of more typical things she wrote really made me stop and think: she said her grandmother helped her see that she needed to love herself unconditionally, and she said she found comfort in repeating to herself, "I'm not alone."

"I'm not alone." That's pretty powerful. And it's the opposite of what I've been saying over and over again to myself and sometimes to other people. My words have been along these lines: "I'm all alone. No one understands me. No one but Sandy ever understood me. Now that Sandy's gone, I can't ever hope to truly be known again."

I've always been very suggestible. Repeating that I'm alone and not understood can only be a self-fulfilling prophecy. Besides, if anyone understands that a loved one's consciousness is still nearby, it's got to be me. I have no excuse for rejecting the comfort offered by Sandy's presence. So I resolved to interrupt my despair, if only with the words "I'm not alone."

The unconditional love stuff is a little harder for me to handle. I know and accept that other people love me, but some part of me has always assumed that if they truly knew me, they wouldn't. (Except Sandy. See above.) So, since I know how flawed I am, how could I possibly love me? Yeah, I thought I was a little more advanced than that. So that's something to work toward. If I can love me unconditionally, I'll know that I can be known and loved even after Sandy died. And that's got to be a good thing.

What now?

Now that we're past the first year, I can
focus on happier times, at least. Two years
ago, we were in Moses Lake with family,
testing our new tent (which we found free
next to the dumpsters up the street). We
stopped at the farmer's market in Issaquah
on the way to buy berries to share.

I'm a little lost. A lot sad. Kind of disappointed. We passed the one-year mark, and I'm still grieving. I didn't consciously expect anything to change suddenly, but I did expect something to happen — internally or externally — to mark the milestone. I have stopped dwelling on what was happening a year ago, but my feeling of futility seems to have grown.

The books all stop at a year: The Year of Magical Thinking, A Widow's Story, etc. I took some comfort in measuring my pain and sorrow, my return to normalcy, with theirs. And now? What's the message to be found in the lack of words about the second year? Am I supposed to be "over it" or "moving on"? Or has the despair just become so ordinary that it's not worth writing about anymore?

Four days past the anniversary of her death, I find myself let down. Because everything focuses on the first year, I thought somehow I just needed to get through that. And then? Well, I didn't know; I couldn't see past the 19th of July. I just assumed I'd have my brain back, some clarity, more energy. Instead, I recognize the accomplishment of getting through the first year relatively sane and with finances and social connections intact, fairly healthy and active, not obviously addicted to anything harmful. And what's my reward for all of this effort? Another year without her. And a year after that, and another after that. Is that what I made it through this year for?

Even the poetry stops at just about this point. I reread snippets from "Letter after a year," the penultimate poem in Donald Hall's heartbreaking book about the illness and death of his wife, Jane Kenyon, and about his first year without her. The book is called Without, and I recommend it if you want to understand some of the tumultuous experience of living with a spouse who is dying of cancer and then living without her. Gus, by the way, is their dog.

From "Letter after a year"

. . .
There's one good thing
about April. Every day Gus and I
take a walk in the graveyard.
I'm the one who doesn't
piss on your stone.
. . .
The year melted into April
and I lived through the hour
we learned last year you would die.
For the next ten days, my mind
sat by our bed again
as you diminished cell by cell.

I found Hall's poems comforting because so much of his experience mirrored my own, and that's true of his reliving the last days of her life as well. Now, I've lost my guides but I'm not done grieving. It's becoming clearer to me that this is a task I can't ever cross off my to-do list. That this is something I'll be struggling with, even if it gets a little easier with time, until I'm with her again. While I no longer particularly care to have a long life, I'm not planning to shorten it, either. I'm just not too excited about the days and months and years ahead.

Still fragile

I'm no longer obsessing about what was happening on each day a year ago, but the relief I felt on Thursday didn't translate to any real peace of mind, either. I'm intensely sad. Not all the time — I laugh, read, do my pushups, and putter in the garden as if nothing is wrong. But I'm closer to tears than I appear, and the moment I grow hungry or am uncertain about a comment or intended inflection or any number of other things, I collapse.

I love this photo. Something about the angle, with the piano,
makes it seem arty instead of just careless. And it includes
so many aspects of Sandy: music, gardening (seeds in the box),
cooking (cookbook under the box), books in the background.

It's a feeling of compounded failure. I failed to heal Sandy, and I've failed to get her back. Yeah, I know, the first was unlikely and the latter impossible. But tell that to my subconscious, which has high expectations, driven by the need to have her with me.

I'm finding the most comfort in small competencies. This is not the time to take on new challenges or navigate nuances, clearly. I do best when I identify discrete tasks — buy groceries, take the compost out, return books to the library, charge the iPad — and successfully perform them. I'd hoped I might be more confident once we'd passed the anniversary of Sandy's death, but no switch was flipped. The burden changed but wasn't lifted.

So this weekend, I'm working on bite-sized tasks, and still giving myself plenty of room to grieve. This week, I need to get back to work, but I'm fortunate enough to structure it myself, so I can focus on the parts of the book that I'm most certain about and leave challenging bits that I need to puzzle out for days that I'm stronger.

Grief goes on and on and on. A few minutes ago, I read an article that advised parents on how to help kids overcome homesickness at camp or other times they're away from home. One of the last quotes in the article was "We never stop missing the people we love." He got that right.

The business of death; the business of life

Well, we've passed the one-year mark, just about fourteen hours ago. I was sobbing then, after a pretty miserable day. But today is easier. Though Sandy's death certificate says she died on July 19, my body says it was the 18th. She'd begun her final death breathing before midnight, and I don't know whether she was even aware of our presence after that. Her focus was necessarily on the final business of dying, and after holding off for so long, she completed it quickly. Neither Laura nor I had begun to get ready for bed yet when everything shifted. We were back to the house shortly before dawn, having left Bailey Boushay for the final time. I went to bed at 6:30 a.m., ending July 18th, and when I got up at 9:30, July 19 began.*

I remember bits about that day: calling the Social Security office, eating three meals, Laura and Randy driving me to see my therapist. Dean and Doña and Abby drove me to Belchers' to hang out with Sandy's family before many of them made the trek back across the mountains or up to Alaska. Tonia arrived from Portland to spend the week with me.

It was a hard day, a day of sorrow and disbelief, of struggling to remember what life was like without hospice and caregiving, a day of letting others take care of me. But it was not a traumatic day, and I feel no need to dwell on it as I have the days that led up to it. I'm weepy today, but I also have a sense of relief.

The carnage from the emergency kit was
right where Sandy was sitting in this
picture. But none of the surrounding beds
were affected at all. I guess birches and
hydrangeas and rose of Sharon bushes
aren't interesting to hungry beasts.

I went out to water and to harvest more plums, after not spending any time in the garden yesterday.  I first noticed something was amiss when I stepped over the remains of a rotting chunk of eucalyptus tree (left over from the Great Falling Tree Adventure of 2006). I'd been ripping parts of the rotting chunk off for the yard waste bin every few weeks, but now it's smashed on the ground. I pondered whether a cat fight might have left it looking like that, and then I saw that the emergency kit had been opened. It's in a Rubbermaid container — a couple of grab-n-go backpacks with a first aid kit and duct tape tucked in as well. The lid was off the Rubbermaid container, the first aid kit tossed aside, and a plastic packet of soy nuts had been gnawed through and partially eaten. Because the lid was off, I thought a human must have been the culprit, but why wouldn't a human just grab the backpacks and go? And a human wouldn't gnaw through the soynuts bag, right? That's when I realized it must have been a raccoon. Somehow that raccoon rummaged through the backpacks without pulling them out of the bin, because I found an empty fruit leather wrapper a few feet away, and later, near the plum tree, an empty Luna bar wrapper. I chuckled over fruit leather, soy nuts and a Luna bar as some sort of balanced diet. I stopped chuckling when I saw the plum tree. The limb that had split a few weeks ago, which I'd taped up to heal, had been wrenched downward; other small branches littered the area beneath the tree or dangled precariously. Green plums were scattered on the ground, and there wasn't a ripe, nearly ripe, or even turning-color plum to be found; there had been dozens close to ripe when I last harvested two days ago. Someone was hungry, pulled branches down to pluck every piece of ripe fruit, maybe even climbed the young tree, given how much damage there was.

I repaired the tree as best I could. I invited the cats, who'd come out with me, to smell the areas of the emergency kit and the plum tree, thinking their reaction might confirm a raccoon's presence for me. They were unconcerned; Belly even rolled around happily in the area where the emergency kit had been after I took it inside.

I'd been looking forward to more plums, though I'd been a little overwhelmed with the bountiful harvest. I've already eaten a couple dozen, and I'd been thinking I'd need to find the energy to make jam or do something creative with them. So I really don't mind sharing the harvest. But I do mind the damage to the tree, and I'm grateful that the tomatoes weren't yet ripening.

It was disturbing to find the emergency kit rifled through and the plum tree damaged. But once I'd reassured myself that the cause had been something other than a human (what human would be so reckless and then close the gate as they left? What human would have taken only fruit leather and a Luna bar from the emergency kit?), I actually appreciated the primal nature of it all. Hunger drove this visitor, and that hunger was fed. Hunger is so basic, something all bodies share, part of the drive to live. And right now, on the first day of the second year of my widowhood, I honor that drive to live. I hope the raccoon's hunger was satisfied and that he or she now believes there is nothing left of interest in this yard!


*I'm aware that while Sandy's death was on the 18th for me, before I'd put that day to bed, most people learned of her death after they woke on the 19th. Only a handful of us were awakened in the middle of the night (or not yet abed) when she died. So, for many, this would be the hardest day, and I don't want to minimize that.

Countdown

I've been surprised today to recognize a kind of anticipation. Not the anticipation of an upcoming vacation or a reunion with an old friend. It's more like looking forward to the end of an ordeal, for better or worse, as with an election when the ballots have been cast but not counted yet.

Adding three little kittens to our lives  — that was definitely a
happier time. When Nada and Belly have their seventh birthdays
next month, I should be able to rejoice in the memories of
sharing their kittenhood with Sandy.

This morning, I started counting down the hours to the anniversary of the moment of Sandy's death: it's just about 35 hours as I write this. At first, I was disturbed by my apparent excitement. But as I've watched my own reaction through the day, it's started to make more sense to me. Everyone talks about the first year of widowhood as the hardest, and I've heard people say that it was as if a light were turned on when they passed the milestone, after having been in the dark for so long. So I'm curious to see if that's the case for me. I doubt it will be, frankly. But I know that I'm anxious to get back to regular grief, and to remembering the fullness of our time together. Those memories have been overshadowed the past five weeks by my need to relive the last weeks of her life. In a few days, I hope to be freer to remember happier times.

I've had a hard time thinking past July 19, and now I'm beginning to peer into the months ahead. Those months would be better if Sandy were here physically, healthy and strong and ambitious. But even without her return, I think, as she would say, they "won't suck." And I'm hopeful that she will be here with me, however she can be, and that my awareness of her presence will be clearer — since mid-June, it's been clouded by the powerful emotions and experiences of 2011.

I know there will be moments of intense pain and despair in the next 35 hours (I was certainly despondent last night), but I'm excited about reclaiming my brain and my energy again. I want to feel more competent and coherent, less helpless.

Safe

I've just come in from the garden. It's currently a place of hope and abundance.  Dozens of plums are ripening on our young tree. I popped the first fully ripe, sun-warmed blueberries into my mouth today. The strawberries are still producing enough for my morning smoothie. Some cherries have been spared by the birds. Chard and spinach and beets beckon with dark green leaves.  Sweet Walla Walla onions are fully bulbed and have their skins. The tomato plants are strong and lush, starting to get out of control as their fruit steadily grows larger. I'm nursing melon and pumpkin plants, hoping to take full advantage if Seattle's summer is unusually warm. Weeds mock me everywhere, and there's much much more to do, but the garden is a peaceful haven right now.

It was a sort of oasis for me a year ago, too, though it was much more neglected then. On this day in 2011, I lingered in the back yard, marveling at how so many things could continue to grow while Sandy lay dying less than a mile away. I welcomed the scent of tomato leaves on my hands and the feel of weeds tumbling from my gloves into trugs. I wondered how I would be able to stand to garden without Sandy, and when I would ever find the energy.

That was my last time home before she died. It was Saturday. After she'd stopped eating and drinking and talking Thursday morning, we'd been surprised when she started talking again Friday afternoon.

One of the ways we calmed her that night was to help her imagine
herself in different places. I talked her through a specific, peaceful
day we spent in Santa Barbara in March 2006. It was a memorable
day in its own right, but I knew she'd also be able to remember
photos I took of her lying contentedly in the sun at the bird refuge.

It was initially a gift to have her interacting with people again, but that night was hellish. Changes that were occurring in her throat due to dehydration and dying caused a gurgling sensation that apparently triggered vivid memories of the time she almost drowned many years before. I was alone with her Friday evening when she suddenly looked me straight in the eye — stern and demanding — and ordered, "Help me!" I'd been feeling so conflicted about letting her die that my first impulse was that she was angry that I wasn't doing anything to save her. I called the nurse, who told me that such outbursts were usually related to past events; it was unlikely that she was asking for medical intervention.

The nurse was right. It soon became apparent to me that she thought she was drowning. Sandy threw her arms up as she screamed for help, reliving that nightmare over and over again. Laura and I, along with a very attentive nurse and some powerful drugs, worked to calm her well into the early morning hours. We kept assuring her that she was safe, she was in a safe place.

She was safe, in that the experience she was having wasn't happening at that time, in that place. She was not going to drown. But even as we told her she was safe, I felt my brain hurt. How can you tell someone they're safe when they're dying? Aren't we hardwired to want to survive? What was her fear of drowning about if not the fear of dying? What the hell does "safe" mean anyway?

She'd calmed down enough to get some sleep, and then in the morning, she was mainly talking to people we couldn't see. At the time, I thought they were hallucinations. Now, after reading more about near-death experiences, I suspect she really was seeing and talking with spirits of friends and family members who had preceded her in death. At any rate, they made her happy. She seemed delighted by her conversations, which were largely unintelligible to us.

When I was assured that she'd probably not die for about 48 hours, I decided I should go home and shower and spend a few hours with the cats. I was exhausted from the night of calming Sandy, and from the previous four-plus weeks. I ended up spending about eight hours at home. For the first time since we'd gone to the hospital, I felt comfortable being home alone. Each other time I'd been back while she was at the hospital or Bailey Boushay, the empty house had been a reminder that I'd soon be a widow. But this time, I ached for my routines — for answering email in my office, eating a real dinner I made myself, watching a favorite show on TV, laughing as the cats performed their goofy antics. I indulged in all those simple, daily comforts, and I enjoyed the cats' love as they were super-clingy, having had little time with their people for weeks.

That was the only time I came home with a real understanding of when Sandy would die, with the knowledge that I would be spending nights in our bed again soon. Oddly enough, I think that knowing that calmed me because I still, subconsciously, expected us to return home together when the whole ordeal was over.

That night, I returned reluctantly to Bailey Boushay House, not certain she'd even know I'd been gone. I was wonderfully surprised to find that she knew me, could focus on me, said she'd missed me, and even responded passionately to my kiss. We went on to have our final conversations that night. I wouldn't trade that time for anything short of having her back. Tonight I won't be seeing her at Bailey Boushay, but maybe if I'm lucky, she'll visit me here.

Another goodbye

The Japanese Maple in the front yard has clearly been stressed for some time, and my best efforts to care for it haven't seemed to help. After many failed attempts to identify the problem, I finally searched on the right terms this week, and was able to diagnose it. Unfortunately, it's almost certainly verticillium wilt, which is always fatal to Japanese Maples.

I planted the tree sixteen years ago. The house is very close to the sidewalk, and I wanted a psychological barrier between the two. I didn't want to put up a fence with such a small yard, but I wanted separation from the constant foot traffic.

At that time, it was the only interruption in a lake of grass. The only areas planted were a strip in front of the house with some tulips and daffodils and a narrow strip along the front walk where I'd put in pansies and petunias.

This was in 2000. By this time, Sandy had
planted much of the front yard, largely based
on the tree's current size. But it would get
much, much bigger!

From the day it went in, that tree has been the centerpiece of the yard. At $50, I considered it a major investment. When it was young, we protected its bark from Prudence's claws after she started using it as a scratching post. As it grew older, it became the favorite hiding place for a series of our cats (and sometimes other cats); it's where Grumpus had been hanging out the day I picked him up and brought him inside the house for the first time.

Over the years, as Sandy planted flowers, she worked around the maple. She complained each year that it encroached on her space. But it had seniority, barely, and it was majestic, so it (and I) always won that battle. 

Several years ago, it developed a worrisome habit of leafing out slowly, from the tips first and then gradually filling in. But it always filled in. In 2010, I decided maybe it had been suffering from neglect, so in January, I snipped off its dead branches (mostly small twigs), weeded the area under it thoroughly, fertilized it, and mulched it with fresh compost. That spring, it leafed out normally, and I was sure I'd found the solution.

This is the view from the front porch in 2010, when the
tree seemed to be doing fine, and everything around it
was lush and abundant, too. (And there's our little black
VW Golf, and the smoke tree, too, as a bonus.)

But 2011 was a weird winter and, despite my efforts, the tree returned to its odd leafing pattern. This time, though, there was a blank spot through the summer. And this year, though I tended it as I had in 2010, the blank spot is much larger. From the front door, it looks fine; from the sidewalk, it's skeletal.

Turns out that's characteristic of verticillium wilt (VW), which is prevalent in Northwestern soil. Japanese maples are vulnerable to VW. Younger trees sometimes die within days; older, established trees like mine can take years to decline, as the tree isolates the VW somewhat successfully at first. A year of remission is common, but the disease is always fatal. Once again, I'm helpless; no matter what I do, it's going to die. The timing of this discovery is poignant and unfortunate, I think.

It's not that it was Sandy's tree. I planted it before we'd even talked about her moving in. And she had a love/hate relationship with it. But I've always loved it. It symbolized my early efforts to transform this house into a home, and it was the only thing in the yard that we never changed. Removing it will leave a gaping hole in the center of the canvas Sandy planted. I hope I can figure out how to make that transition gracefully before the time comes, but this week, I'm just allowing myself to mourn my inability to save the tree as I try to accept that I was unable to save Sandy.

Helplessness

The last couple of days, my overall sense has been one of powerlessness. That, paired with incompetence. I'm hyperaware of everything I don't do perfectly, and feel resigned to things just sort of falling apart around me.

I know, rationally, that this is a response to how things were a year ago. Earlier in the ordeal, both Sandy and I had assumed that she could get stronger. Even when we knew she didn't have long to live, we believed that there would be a "better" before there was a "worse." But by July 13th, though I continued to struggle to make things better — to maximize her lucidity while minimizing her pain, to try to have her work with the physical therapist to get to the bathroom, or at least carried out of the room for a change of scenery — I recognized that each effort met with failure.

At 6:30 that morning, she ordered me to call the notary public right then so that she could sign her revised will in front of him. I told her that the notary wouldn't be in until 8:00, but we could probably get him up there as soon as he came in. Soon, though, she was agitated, demanding more pain medication, and starting to behave erratically. I conferred with the doctor on the telephone, and she told me that Sandy may have already had her last truly lucid moments. She convinced me to permit them to give her dilaudid.

The first chemo regimen in 2006-2007 was brutal, but we knew
there was an endpoint. When she was in treatment for Stage IV
breast cancer, we hoped there wouldn't be an endpoint, or at
least not the one they told us to expect. And no matter how
much I knew about the odds, it wasn't until she stopped
eating and drinking that I resigned myself to her dying. But
even then, I could only tolerate that reality for short periods
of time. I'm still having trouble with it. How could she die?

In the hospital, I'd negotiated with the nurse about dosage, and I'd seen good results with less than a milligram. I don't know why I didn't ask what dosage they were giving, but almost immediately after I agreed, the nurse pushed 4 mg through Sandy's IV. Her eyes rolled back in her head, and she was gone. As doctors and nurses took her vital signs and otherwise examined her, her friends showed up with the scrambled eggs she'd specifically requested they make her for breakfast. In the chaos, I waved them away. Sandy was out of it for six hours, maybe seven. She never got her scrambled eggs.

She did recover from the narcotics enough to have visitors that afternoon, friends as well as family, including her stepsister, who had just arrived from Alaska. She wasn't very talkative, and instructed others to entertain her.

That evening, the nursing staff affixed a pain medication pump subcutaneously. It was quite an ordeal as they first tried to attach it through her port, but that didn't work. The idea was that she'd get a steady dose of dilaudid automatically and when she needed more, she could push the button and get an additional small dose. She was awake at 3:30 a.m., declared herself starving, and she finished the Boost drink she'd started just before falling asleep. She was awake again at 6:30 to take pills, and the nurse complimented her bed mobility (she pulled herself around using the bed rails) and her pill-taking ability.

Her legs had been twitching with pain, restless, much of the night. I'd held on to the button, and I'd been giving her an extra dose of dilaudid just about hourly, though it really didn't seem to help. I was relieved at 8 a.m. when I gave her a dose and her legs relaxed, finally. But I wonder now if it had anything to do with the dilaudid.

At 9:30, the nurse came in to wake her for her pills, and we couldn't rouse her. This was different from the way she'd been with too many narcotics in her system, different from the nonresponsiveness of a sodium drop. Laura and I both felt it. We asked the nurse if this was it. He was such a sweetie, such a good coach and mentor to us in this unfamiliar process. He said, "Do you mean the change in plan? That she'll stay here instead of going home?" He told us that she wouldn't die that day, but that yes, this was probably the beginning of the end phase.

And later, when we did have the opportunity to ask if she wanted food or water, she refused it. I can't remember now if that happened before she started talking on the afternoon of the 15th or if it was then. But it was confirmation, certainly. At the hospital, I'd taken her a bike water bottle so she could easily drink in bed, and in the weeks that followed, she'd insisted it always be nearby and full. When she woke, she reached for it immediately each time. She'd been terribly thirsty. But on the 15th, when she was actually visibly and audibly dehydrated, she refused water.

We were on a path I didn't fully understand, but I knew I wouldn't like the destination. I couldn't drag my feet, take a detour, turn around. We were doomed, destined to keep moving toward an undesirable ending. I could tweak some things, argue the merits of various pain remedies, and be present. But I couldn't keep her body from its trajectory, and I couldn't get us back home together. 

There were good things about the way Sandy died, if she had to die at all. She got to say goodbye; I was able to be with her and take care of her; she was surrounded by people who loved her and was able to receive messages of support and admiration from friends all over the world. She suffered more pain than she would have if she'd died instantly somehow, but in general, I think this means of death served her better than a quick, tragic accident would have.

For those left behind, though? Yes, I'm glad we were able to say the things we needed to say, and to have more time together. But it's devastating psychologically to be so powerless, to know she's dying and not be able to do anything about it. And now, a year later, that's the feeling that permeates my days and my dreams.

Studying consciousness

Communication from those who have died is spotty at best, so one of humanity's great mysteries has always been what happens when we die. The only living people who have direct experience with dying and the afterlife are those who've had near-death experiences (NDEs). In the last twenty years, a whole science has developed around studying NDEs and extrapolating their meaning for consciousness.

You can be clinically dead and recover without having an NDE; I also suspect some who have them simply can't make sense of them and so don't remember them. Every day, we filter what we see, hear, and touch through our experiences and belief system, and those things we can't find a place for, we often just discard.

Those who do recall NDEs describe them differently, filtered individually, but there are remarkable similarities. I am fascinated by the stories, especially by how often people are either instructed to return to life because they're not done yet, or given a choice to continue living or to die. However, what I'm most interested in are the implications for life after death.

I've been reading about NDEs since last fall, but I somehow missed an international conference on the topic held right here in Seattle last month. (Synchronicity fail!) My therapist learned of it after the fact when she heard one of the speakers on the radio. She was very excited about what he'd talked about, thought it would interest me, and as she continued, I realized I've had his book on my bedside table since November. The book is Consciousness Beyond Life, by Pim van Lommel, a cardiologist who wanted to understand more about the experiences his patients described during heart attacks and other life-threatening events. He has systematically studied NDEs for 20 years and published the first scientifically rigorous study on NDEs in The Lancet in 2001. I cracked the book open last night, and wanted to share a bit.

Consciousness is not confined to the brain because consciousness is nonlocal, and our brain facilitates rather than produces our experience of consciousness. Whereas our waking consciousness has a biological basis, because our body functions as an interface, there is no biological basis for our endless and nonlocal consciousness, which has its roots in nonlocal space. Waking consciousness is experienced via the body, but endless consciousness does not reside in our brain.

I particularly like a death notice he quoted: "What you have perishes; what you are survives beyond time and space."

A bunch of us went through the Adobe haunted house together
in 1996, and Sandy convinced us to have the photo taken as
a group. Our culture loves haunted houses, delights in ghost
stories, salivates over otherworldly phenomenon — but
people are hesitant to share touching moments of contact
with the consciousness of people they love! Go figure.

van Lommel says that there are no scientific articles or monographs on the topic of contact with the nonlocal consciousness of people who have died because the taboo is such that these experiences are usually not mentioned, even to next of kin. (Apparently I missed the memo about the taboo, because I do prattle on and on . . .) However, a survey conducted by the Tilburg University in the Netherlands in 1980-83 asked respondents anonymously whether they'd ever had a sense of contact with someone who had died: 25% (125 million) said yes in Europe; 30% (100 million) said yes in the U.S. Research specifically asking widows and widowers has found 50% have had at least some contact with the consciousness of a deceased partner. And among parents who have lost a child, a whopping 75% had had contact.

NDEs have only been researched seriously in the past few decades. Surely it's time for us to take a scientific look at the kind of contact people have with loved ones after they die. The first step, I think, is for people to talk about it more openly, without fear that they'll be thought crazy or delusional. I've really been astonished by the number of people in my life who share stories of contact with fathers, mothers, grandparents, cats or dogs, dear friends, or anyone else they had a strong connection with in life. They'd never shared these stories with me before. I'm not saying it needs to be part of every conversation, but I do think there are some truths worth exploring here. And they can't be explored if we don't own the experiences and come out of the closet about spiritual contact.

I'm not sure whether I'd be alive right now without having had so much contact with Sandy since her death. But I'm certain that I'd be much worse off, much further from a return to my optimistic, active self, if she hadn't been so generous with her presence. If we can learn more about opening those channels of communication, we could reduce suffering among survivors, and as someone who's been devastated by pain many times in the past year, I can attest that that's a worthy goal.

Making connections

As is obvious to those who've been reading here, Sandy's last five weeks have been much on my mind lately. But I'm not just reliving 2011; I've also been actively engaged in the present. In the past couple of weeks, I've started volunteering for the Washington United for Marriage campaign, and I'm enjoying getting to know campaign staff and other volunteers. I've played tourist with Cynthia, finally indulging in the Underground Tour in Pioneer Square after 22 years here. I've biked to Snoqualmie Falls with Colleen, and we took advantage of the Sunday closure of a stretch of Lake Washington Blvd to enjoy a more leisurely ride with several friends. The garden is looking better, as I've spent many lovely hours working in it, and I've been feasting on home-grown spinach, chard, beet greens, strawberries, green onions, artichokes, and a couple of prematurely picked cherries.

I'm simultaneously experiencing tremendous grief and a feeling of abundance and possibility. It's unnerving sometimes, but I'm starting to get the hang of it.

Saturday evening, I attended a friend's housewarming party. Kathy worked with Sandy at Microsoft the last year she was there. When the evening began, Kathy was the only one there that I knew, but I had a great time. Any gathering that begins with someone putting a four-month-old puppy into my arms is going to be a successful one!

I was in a pretty good space. As several of us wended our way through conversational mazes, one woman observed, "You really appreciate life." I was a little surprised, because lately I think of myself as depressed, dulled at the edges, bereft. But she was right. The optimist in me remains present (or, perhaps, has returned), and as I told her, I fully understand just how blessed and privileged I am. I love and am loved; I'm connected to multiple engaging communities, financially comfortable, relatively healthy and fit, capable, competent, intelligent; my schedule is my own so I can garden, bike, and work in ways that feed me.  Even as I grieve, I have much to appreciate.

Sandy had the opportunity to work with some pretty cool
people over the years - and also to entertain them. I think
this must have been the set for a murder mystery kind of
event; they didn't expect anyone to lie down in the chalk
outline, as far as I know, but she did anyway.

Another of Sandy's work colleagues was there, a woman I'd met once or twice but didn't even recognize. Sandy adored her, I knew. It was great to have a chance to talk with her and understand why Sandy had thought so highly of her.

And Sandy came up, of course. It's incredibly rare for me to be with someone for more than a few minutes and not mention her in one context or another. Shortly after I'd noted the upcoming anniversary of her death, as we were piling our plates with food, one woman asked me, "Do you think we'll see people again?" I told her that all of my long-held assumptions have been blown away this past year, and that given my interactions with Sandy, I now think we probably will. Then she told me I'd probably think she was crazy (I assured her that I, of all people, would not think that), and she shared with me that she was certain a boy she'd babysat had visited her in the form of a bird after he'd died as a young adult. It's actually fairly common for people to have a poignant experience with a bird, especially, that appears after someone has died. I certainly didn't think her crazy; I think she's probably right that it was him. She also told me about sensing her beloved dog lying on the bed with her after he'd died. Again, I don't think she's crazy; many people have similar encounters.

Sandy's colleague asked me later if Sandy had been communicating with me, and I told her a little bit about the abundance of communication. I asked, then, as I usually do, whether she's had experiences. She told me that she hears her dad's voice sometimes. She hears him calling her name. She's in bed, usually, but she's awake, and she knows it's him. I asked if it comforted her or freaked her out. She said it definitely gave her a good feeling.

I love hearing other people's stories about connections with those who've left our physical world. It's amazing to me just how many ways there are for us to feel close with them, for them to reach out to us. Though there are some similarities, no two stories are the same; each is powerful and personally meaningful. I feel so honored to hear about those connections.

I seem to be in a space in my life right now where I'm making more connections with new people again. Often we bond over stories of death and dying and the relationships that continue afterwards, but I'm feeling connected to people in many other ways as well. In general, I think my empathy has returned, and I'm able to meet people where they are. What's exciting is that I am beginning to believe that I can do that — can be fully engaged in the world and with other people — without sacrificing the closeness I continue to feel with Sandy. So, yes, I have reason to appreciate life!

The importance of advocacy

Many times, I've second-guessed the decisions I made on Sandy's behalf at the hospital, and some at Bailey Boushay. I've revisited every aspect of her illness and medical care from 2006 on to see where I might have failed her. But on this date last year, I know my advocacy made a positive difference. That day bred powerful, painful memories, and it's a relief to feel pride as well as despair.

Laura was amazing. Aside from it being good for
her and Sandy to have more time together, she
filled in the gaps that I couldn't handle; took on
roles as cook, laundress, comforter, sentry, social
secretary; and generally made everything easier.

She'd slept little overnight, there in the living room in her hospital bed. I was supposed to be sleeping on the sofa a few feet away, but I couldn't actually get to sleep before she'd call for me again or she'd just be so miserable I'd have to get up to see what I could do. She was vomiting frequently, and in pain, and I can't remember whether it was that night or the night before that I was on the phone with hospice staff in the middle of the night, seeking guidance. It was a long night. Laura appeared at some point, pointed me toward the sofa, and offered to see to Sandy's needs. I slipped into sleep with sweet relief.

A couple of hours later, we'd begun to worry about her sodium levels. We managed to get some broth into her, but it was becoming harder and harder to rouse her. And then impossible. Because the hospice nurse had told me the day before that we couldn't use an IV, our options seemed very limited. Close friends arrived and helped us attempt to wake Sandy, but we had no luck. We'd all started to assume this was it, this would be goodbye, until I talked with the hospice nurse who had been assigned to us that day. She was amazing. She agreed this looked like a sodium drop, and that we should get Sandy an IV. Due to a bit of confusion that I unwittingly introduced (describing her need for a sodium IV instead of just saline), we weren't sure whether she'd need to go to the ER or not. I knew she didn't want to go back to the ER or the hospital at all. I was pretty sure she wouldn't be wild about going anywhere, frankly, but the hospice we'd long supported seemed like a workable option.

In order to avoid the ER, the nurse worked out a deal for us to go to urgent care for initial treatment and then transfer to Bailey Boushay. Perfect. It was so nice to have an ally who could work through those things for us.

It was at urgent care that I advocated well on Sandy's behalf. By the time we got there, Sandy was in really bad shape. Her breathing changed shortly after we arrived, with little bubbles coming out her mouth. The doctor said it looked like end-of-life breathing, indicating respiratory distress. But I'd seen her look like that before — after her seizures in 2004. I asked them to test her oxygen saturation rate. It was 97%, hardly indicative of respiratory distress.

She had a fever. They were certain she had an infection. The doctor said it as if that sealed the deal; we were done here. I pushed. I said, "Let's find out what it is. If it's easy to treat, let's treat it." They agreed, and the staff drew her blood to check her sodium levels, took a urine sample (which looked pretty suspicious and gave us hope it was a UTI), and did a few other tests to identify possible sites of infection.

Those two things — asking for the oxygen saturation rate and pushing to identify the source of infection — bought her another ten days to say goodbye to the people she loved, come to terms with the fact that she was dying, and have a much less traumatic death. It also bought me precious minutes and memories.

It's possible the staff would have moved forward with treatment somehow, but they didn't even take her blood until I pushed back on the infection. The things I said seem so obvious now, but at the time, I was struggling to figure out what Sandy would want. Would she just want me to let her go? Was it time? Was this what it meant to stop fighting? Laura and I had been with her through an excruciating night, but we'd also witnessed her energy and ambition the evening before. I was certain that she still had things to do, and that she wouldn't want to go that way — suffering and unable to understand what was going on around her, taken down by something treatable.

At Bailey Boushay, after she'd regained lucidity, I told her what had happened and the decisions I'd made. She was grateful, happy to be alive. I told her how important it was to me that we not go back to the hospital, that I knew how much she hated it there. She told me that even if she'd awakened in the ICU, she'd have forgiven me. That was a remarkable thing, really, given how many times in her life she'd been suicidal, how often she'd made me promise to kill her if she couldn't understand what was going on around her and didn't know whether she was happy, and how obsessed she was with getting the Death with Dignity pills. That sentence told me that she understood how terribly hard it was for me to let her go, and also that she wanted as many quality moments of life as she could get.

July 8, 2011, was a very hard day, and it just went on and on, one challenge after another. But it ended on a high note for me. Hours after they'd begun a saline drip and the antibiotics for her UTI, after we'd settled in at Bailey Boushay with her still unaware of what was happening around her and nonresponsive, I spoke to her, as I did periodically, and I heard her say, "Hey."

"Hey" was what she said when I'd crawl back into bed after using the bathroom in the middle of the night. It's what she'd say when I walked into a room she was already in. And it was what she'd said, initially, each time she came back from a nonresponsive state. I slept awkwardly in a reclining chair near her bed, knowing that she was on her way back to me.

Watching 2011 from 2012

It truly is strange to be living in 2012 while much of my body and mind think it's 2011. Yesterday, I felt overwhelmed all day, wondering how to coordinate everything, and constantly had to remind myself that, in fact, there would be no hospital bed delivered, no physical therapist visiting, no social worker enrolling Sandy in hospice, no Wild Ginger delivery from Sandy's sister. Last year, July 6 was a day of negotiations and problem-solving; the problems grew increasingly challenging as the day ended and Laura and I concluded that Sandy was in a narcotic fog again. "Narcotic fog" sounds like she was just feeling fuzzy; what I'm referring to was actually a nonresponsive state that happened a few times from overreliance on narcotics — in this case, we concluded that we needed to remove the fentanyl patch. Though Sandy couldn't communicate, it was obvious that she was still in pain; the narcotics weren't helping, just locking her inside herself.

In 2012, however, the day was flexible, pretty much all mine. I had almost no obligations to anyone else, and had planned just to garden, make some progress on my work, buy groceries, and do a few tasks for the campaign. All on my own schedule, and except for the minor campaign commitments, it didn't even matter, really, whether any of the rest of it got done. Yet all day I worried about letting someone down, mismanaging the schedule.

The past few weeks have felt rocky and unpredictable to me. Some days I'm fine; some days I'm bowled over by emotion; other days I have an unshakeable tension in my limbs. I've been telling people that I should be more stable after the 20th (and have even said a few times, "after Sandy dies," as if she really is dying all over again). But it finally occurred to me yesterday that, unlike last year, I actually know how each day is going to go. My emotions are close to the surface regardless, but I certainly know which days were most traumatic. So I'm going to plan to do the things that require more emotional resilience, patience, and stamina on, say, the 9th or 10th, rather than the 8th or the 14th. And anything that doesn't have to happen in the next two weeks can just wait until the end of July.

Today, I'm remembering the deep sleep Sandy slipped into, when we thought she might be having another sodium drop. I called the hospice nurse to ask if we could start an IV, assuming it was a sodium drop, and the nurse I spoke with said no. She told me, patronizingly, that we needed to respect Sandy's wishes and that she wouldn't want an IV. She was wrong. I knew Sandy's wishes, and I knew she wouldn't want to be left to suffer through a sodium drop and die that way; I also knew that her current POLST (physician orders for life-sustaining treatment) form said IV fluids were fine. And Sandy trusted my judgment. But I couldn't get an IV without a hospice nurse, so we just had to hope that she really was just getting some good sleep, that the gabapentine (a nerve pain medication) was actually working.

And that was the case, apparently. She woke up feeling pretty good, not complaining about leg pain for the first time in a long time. She was energetic that evening, full of plans for cleaning out email the next day and signing a will when the notary public was due to come by. By the time she went to bed, though, she was in a great deal of pain and then the vomiting started; it was an endless night of distress. And by morning, she was unresponsive in a way that really was, pretty clearly, a sodium drop. We didn't realize it was also complicated by a urinary tract infection and blood infection until later. But the hospice nurse assigned to us on the 8th saw no reason not to give Sandy an IV and coordinated our transition to Bailey Boushay. She was amazing, a godsend.

We talked extensively about end-of-life care
even before Sandy had cancer the first time,
and we talked about it after each setback or
status change. The idea that I was ignoring
Sandy's wishes was ludicrous. She trusted me
completely, and approved of my decisions
when she regained lucidity each time.

I do wonder, though, whether an IV on Thursday, the 7th, might have kept Sandy from such a crisis point, kept her from losing another day of lucidity. We knew she was in danger of low sodium, due to a syndrome common to end-stage cancer patients. And we were talking about going to Bailey Boushay for a few days to help get her nausea and pain under control. But we could have made that transition more smoothly, with her consent, if she hadn't been completely nonresponsive on the 8th. Maybe I should have pushed back harder; the nurse was intimidating, and I felt unsure of how this all worked. The very concept of hospice — where death, Sandy's dying — was not considered an emergency, was a struggle for me. I'm a doer, a fighter. But we'd agreed not to fight anymore. So I was in unfamiliar territory.

The same nurse who refused the IV on the 7th reappeared two more times to infuriate me. On the 18th, about 12 hours before Sandy's last breath, I was sitting next to Sandy, holding her hand, when one of our regular Bailey Boushay nurses came in to give her the steroids or some other regular injection. I commented that it had been half an hour late yesterday and was half an hour early today. I honestly didn't care; at that point, I couldn't imagine that it mattered. But I automatically track things, notice patterns, especially when it came to Sandy's care. I'd been monitoring her meds for so long that I'd have had to make a conscious effort not to. He smiled at me goodnaturedly and said "Are you keeping track of me?" Before I could even say that it was habit, that obnoxious Group Health nurse, who just happened to be in the room for a brief visit, came up behind me, put her hands on my shoulders, and said "Someone needs a shower and a massage." She used the same tone of voice my parents used to use when I was throwing a tantrum and they'd say, "I know a little girl who needs a nap." While probably very accurate when I was a child (though unlikely to do anything but provoke a fiercer tantrum), in this case, it was completely uncalled for. The love of my life was dying. I was watching her fade before my eyes. No  matter how tightly I held her hand, she was slipping away from me. It was not for this woman, who didn't know me at all, to imply that my distress could be washed or massaged away. I flicked my shoulders to shake her off of me and said, pretty emphatically, "You don't know anything about me." She said, then, as if she were my strongest advocate, "You need to be right here, don't you? Don't let anyone else tell you what you need." F-ing hypocrite.

The last time I interacted with her, I'd called a few days after Sandy's death to find out what to do with leftover controlled substances, such as morphine. She told me, unbidden, "You took good care of your friend." I said she wasn't my friend, she was my spouse. Instead of simply apologizing, she laughed and said, "Well, I'd hope she was also your friend." She would never have said that to a woman mourning her husband, or a man mourning his wife. She would never have called their spouses their friends. I am honored and grateful to have many wonderful, loving friends who I very much consider part of my family. But Sandy was (and is) to me what no one else has ever been nor probably ever will be. And simply because we're both women, far too many people diminish that relationship with the word "friend."

Three times I interacted that woman, and three times she infuriated me. I did tell the social worker about the encounters, especially the final homophobic one, and she was concerned and said she'd talk with staff. I have no idea whether it made any difference. One of the benefits of living in 2012, though, is that I'm unlikely ever to cross paths with her any time soon.

Accepting love

One of the sweet events of Sandy's last weeks was Randell's
visit. They'd been incredibly close for years, and then drifted
apart. Sandy missed Randell terribly, talked about her frequently,
and longed for a reunion she didn't think was possible. But
Randell came and spent an evening with Sandy here at the
house on the 5th; she was loving and generous, and it was
clear that their connection remained real and strong.

I spent a lot of time yesterday thinking about friendship. Sandy did an amazing job of summoning people to her as she was dying. I admired her clarity in knowing who was important to her, and her courage in reaching out to them. That courage was rewarded with the tremendous support she received, the constant flow of people connecting with her one last time before she died.

Many times in the last year, I've wondered who I would call to my side. Would I, too, have clarity? And if so, would I have the courage to ask them to come? And would they come?

The underlying questions here: Am I loved? Am I important? Can I believe that I am loved and important?

Pondering this inevitably leads me to think about how we live our lives. If I'm important enough to someone for them to come visit when I'm dying, can I reach out to them now, while I'm healthy? Why do I hesitate to reconnect with old friends? Why do I assume I'm a nuisance or a drag, when I welcome their presence in my life?

I'm insecure, but I don't think my insecurities are unique. Sandy was loved by hundreds, maybe thousands, of people. That was always obvious to me, but she couldn't see it. She spent so much of her life feeling unworthy of the love and attention she craved, and unable to soak it in when it surrounded her. But in her last few weeks, she both let herself be vulnerable enough to ask for what she wanted and internalized all the goodness that flowed her direction. I am so grateful that she had the opportunity to absorb the love that was rightfully hers, and I wish she'd been able to do that for the 50 years prior.

Sandy taught me much in the time we had together, and I've continued to learn from her dying process and from her death. With Sandy, I felt loved and adored. Without her, I need to overcome my self-doubts to accept the love that friends and family have to offer. I don't want to wait to internalize that; I want it to feed and reassure me now. That's much easier said than done, but I guess that's true of most things that are worth doing.

Growing impatient with grief

The days progress, each one bringing with it its own traumatic memories and a few sweet ones, as well as the challenges and opportunities of 2012. I slip (slither?) back and forth between past and present many times a day, sometimes not sure which one I'm experiencing. I spend several minutes at a time trying to unsnarl tangled images, sussing out the order of some events or who was with us or how Sandy moved from severe pain to feeling relatively okay and back again. My memories are snapshots, not moving pictures. Sure, I've captured a scene or two in motion, but what lies between them? 

Ah yes, healthy, strong, gorgeous.

It's not unusual, of course, to discard the memories of unremarkable moments in our lives. And it typically doesn't matter whether you did the laundry first or ran errands, for example. But it's maddening to me not to be able to account for all the minutes of the last days of Sandy's life. I can't change anything in them, but if I could relive them through memory. . . I don't know. Certainly, I'm better served in general by remembering her healthy and articulate and ambitious and strong. But right now, this month, it seems very important to remember the struggle, the grace with which she died, the powerful and the trivial moments we shared.

My grief has intensified the past few weeks, and it presents very differently from the grief of last August or November or this March. I really do seem to be switching back and forth between past and present. While I never forget that Sandy died, I sometimes forget that I'm grieving. I laugh as easily as I did a few years ago, before she was ill (and we laughed plenty when she was ill). I have enough energy for a challenging mountainous bike ride, playing tourist with a friend downtown, gardening, taking on new volunteer responsibilities, working. But even when I'm not keening or sobbing or sighing heavily, I'm remarkably less articulate than I expect to be, fumbling over sentences and struggling to find the words or even concepts I want. I don't feel particularly competent right now, and I hate that.

This part of the journey is important. Honoring what we went through a year ago, integrating the experience in a way I couldn't then, riding the waves of grief as they arrive — all esssential and expected. I'd even been looking forward to it in a way, hoping I'd feel more connected to Sandy and our life together again. But now that it's consumed me the past few weeks, I'm impatient.

I find myself looking forward to July 20, when I hope to cast this cloak of anniversary aside and regain a sense of mental clarity. I can't slip out of the task before then; neither my body nor my sense of loyalty to Sandy will allow it. But I'm like a kid who sees sunshine through a classroom window and squirms in her seat, wanting class to be over so she can be out in it.

More threads of memory

She wanted to go home. She'd had excruciating pain on Thursday, after her last radiation treatment, but Friday had been better. She'd felt social, enjoying phone conversations with friends and a visit with a nephew who came within a few hours of hearing about her plight. Her sister returned, and our moods were relatively light. We ordered sandwiches from our neighborhood pizza place and had them delivered at the hospital.

The doctors said she could probably go home. I wanted to make sure everything was set up before she did. The last time we'd left the hospital, we hadn't had in-home nursing visits arranged, and we were completely on our own — and we were back 36 hours later in the ER. I wanted to know that when we walked out the hospital doors, we wouldn't have to return.

Sandy had had a catheter since the 29th. She'd been out of bed just once since we'd arrived, and it hadn't gone well. There was much to do before she went home on Sunday, which was the plan.

So, on July 2nd, that Saturday, I spent several hours at home, cleaning and organizing and rearranging and planning. I took a break at one point and lay down on the sofa to think through some things. I noticed the digital recorder on the coffee table, still there from the 17th of June, the morning she'd been so confused. I recorded her because I feared that she'd be lucid by the time we saw a doctor and they wouldn't understand the extent of the problem. As it turned out, I didn't have to convince anyone; rather, I felt the constant need to remind them that she'd been fine two days before.

Anyway, I started to play the recording. It was agonizing, but also grounding, a reminder that I'd lost her but also gotten her back multiple times. I'd listened for about five minutes when the phone rang. It was Sandy. It was so good to hear her voice, bringing me back to the present from the memories of that awful morning. So normal to answer the phone and have it be her. She'd called primarily to convince me that she should come home right away. She said something about convincing the doctors, and I told her flat out that I was the one standing between her and going home. I needed to know that she could stand up and use a commode, for starters. And we wouldn't even have a commode in the house until that evening.

I don't know how much she remembered about the last time we'd been home. I know she didn't have any idea how traumatizing it had been for me to be unable to take care of her. She was desperate to come home, but didn't seem to have any idea how much responsibility she'd be placing on me in doing so. And she was angry with me, felt I wasn't giving her control over her own life.

She continued to be angry with me, off and on, for the next few days. Much of it was legitimate: she'd been unable to think for herself so many times that I'd fallen into a habit of making decisions without consulting her, telling her to do things instead of asking if she thought something was the right thing to do. Sandy had always been brilliant, strong-willed, informed, and competent. Though I'd always been involved in her medical care, the ultimate decision on everything had always been hers. She didn't recognize the changes in her brain and her own competency; she saw only that my behavior had changed. I apologized that day, and then I tried to change the way I interacted with her, asking her whether something (even if it was the only logical thing) was okay with her. She recognized that and appreciated it.

I took in a few of the photos Tina had taken of us, and tacked
them on the bulletin board facing Sandy's bed. I thought it
might help her to see herself looking healthier and more
active. But she was hallucinating, and she frequently saw
only me in the photos. She didn't see herself in them, even
though she knew the pictures well; in fact, she confidently
told her sister I'd used Photoshop to put leaves where she
had been. Another time, she asked why I'd brought in four
pictures of myself. Those hallucinations were terrifying to
me, that she already saw me without her.

But on that Saturday, she saw me as unnecessarily stubborn and controlling because I wouldn't let her go home yet. Later that day, she did have her catheter removed and successfully used the commode. She walked 70 feet with her walker. That was all very encouraging.

I went back home in the evening with Mindy and John, and we moved the mattress to the living room, on the futon frame from the guestroom, which is much lower than our bed, and then moved the futon to the bed. I'd ordered a commode earlier in the day, and John had picked it up and brought it to the house. We got everything set. And once again, Sandy tried to convince me that she should go home that night. I refused, having promised myself that we'd never again leave a hospital in the evening, as it's just too hard to settle in at home then.

I drove to the airport to fetch Laura, which was incredibly stupid of me. I should not have been driving, and I endangered myself, Laura, and other people on the road. We all survived, but I know now how foolish I was not to take up one of the offers others made to pick her up. Just as Sandy still perceived herself as independent and competent, I still thought myself far more capable than I currently was.

I was delighted to see Laura, and Sandy was, of course, even more thrilled. Her timing was perfect, as she was there to help get Sandy home and to help me take care of her.

This is what Sandy posted to her Dreamwidth journal that evening. It demonstrates how much she really was still herself (the cadence and asides, the vocabulary, the voice, even the poor spelling — all still recognizably her), but also how her thinking was compromised by cancer, radiation, and heavy-duty pain medication. It's painful to read in some ways, hilarious in others, and, I think, deeply poetic. I'm sure she meant the title of the post ("tomorrow, I'm gone") to mean she'd be leaving the hospital the next day (Sandy was quite literal), but given the context, its metaphorical meaning is powerful.

"tomorrow, I'm gone"

All Done! All of my radiation have been finished. Sadly, they had another
setback. I honestly wouldn't have beem bummed so much, except they made me
go back come back to the hospital, and wouldn't let me leave for days.
After I had been here the full 17 days and endued many obscure
conservations, the hospitist on duty stopped my room this morning. He (Did I I
mention he looked like Dr. Kildare?) was acting really nice about it, too. (Not
everyone can say, "you're dying, and we love you.")

So, I tell B that this nice Dr seems to think I'm dying.
She tells me he's not god.
We agree he's not god, but damn I'd really like some sertanty about what he
knows.

ooooooooooooooooooooooooooooooooooooooooo in other news, if is a really
am going to be death this time, I plan to do some traveling. though that
will/depend on me being strough euough. Please let me know if you think you'd
like come to Seattle to see me; or for me to come to your town. If you'r cool
with a visit.

Sweet lettermade to go my grave

Now let's see how long I can go from mentioning dead.

Her Dr. Kildare was the hospitalist who was on duty when we arrived in the ER on Wednesday, and he'd been pessimistic from the moment I first talked to him. He was not an oncologist. The last we'd known, the oncologists had been talking about additional treatment options. This guy came in to the ER room and was apparently concerned because we'd been laughing and appeared not to be as somber as he thought we should be. (Sandy was much more awake and alert by this time, and her mother and I had been there with her all day; I believe her older sister was with us when he walked in, too.)

I acknowledged that her prognosis was grim. He continued, though, to to try to emphasize just how bad it was. If he'd talked about the cancer spreading through her brain and her spinal column, I'd have taken him more seriously. But he kept listing the cancer in her lungs, her bones, her adrenal gland — all of which was old news, all of which had responded to treatment. In fact, she currently had no cancer in her bones; I'd seen the bone scan a few weeks prior. He was reacting to news we'd long since digested, so I just couldn't take him seriously.

And then, while I was at home a couple days later, he dropped by Sandy's room and told her she was dying. Or at least that's what she heard. When he came by the next morning while I was there, we were talking about it and he seemed alarmed that that's how she'd interpreted their conversation. So I don't know what he actually said to her or what his objective was. He'd emphasized to me that hospice care was medically appropriate, but we'd already been working with hospice coordinators and had decided to start with palliative care (similar level of medical assistance, but you can still pursue treatment) until we understood our treatment options. We weren't ignoring hospice; we'd made a conscious, well-thought-out decision to start with palliative care when we went home on Sunday, and to meet with Sandy's oncologist on Tuesday, at the appointment we'd scheduled back on June 13. I was angry that he'd talked with her about dying without me there, because she'd been shaken by the conversation.

The subject wasn't new to her. In fact, when I talked with a friend on the phone Friday afternoon, that friend had asked me if we expected Sandy to die within a month. I said we just didn't know. Sandy asked what we'd talked about, and I was honest with her, told her we'd been talking about whether she'd die within a month. She looked at me and said, "Not within a month," surprised that I'd said it might be possible. I wasn't in denial. Nor was she: she didn't expect to die so soon, but even before the doctor came by, she was pretty sure she was dying. As friends started making plane reservations to come out and see her, she told me she'd feel awfully guilty if they all came out and she didn't die. Still, hearing a doctor say it gave it a weight that shook her.

I'm not even sure where I'm going with this. I'm tangled in the memories of that time, still trying to sift through the experience and identify what I did wrong, what we might have changed, how things might have gone more smoothly. Over all, I feel good about the way I cared for Sandy the last fourteen months of her life, and especially the last five weeks. But some days, it's hard not to dwell on the ways I let her down or left her feeling unempowered or failed to find a solution that would minimize her pain while keeping her lucid and competent. I hash it out here, but what I really want is to sit down with Sandy and debrief it all together, to share with her the details that she probably didn't understand at the time, to learn more about how she experienced it all, to process and integrate the traumas, and to move forward together, as we did with each of the challenges we faced in the past.

Like Sandy, I really just want to go home.