Another year

Here's to a new year of strength and energy.

The clock rolled over to 2014 this morning, our arbitrary demarcation of a new year. I've been feeling reflective -- and sometimes wallowing in self-pity -- since our anniversary a few weeks ago, and I've spent a fair amount of time thinking about the past year.  So how did I do in 2013?

I recovered some of my energy, crawled out from under the overwhelming blanket of grief long enough to get involved with multiple community organizations. I think this was possible because I took some time off work -- six months, an indulgence that gave me the opportunity to catch my breath. I'd been working since just after Sandy died, which had been a good thing. But now I was able to face idleness, and then to fill those hours with activities that are more aligned with my passions than writing about computer software is.

I've restructured various areas in the garden, and have plans to do more. I'm moving forward with major home improvements. I've made new friends, gained new skills, identified gaps in my knowledge and experience, and even explored going back to school. In short, I've been looking toward the future.

And I carry Sandy with me as I do so. Visitation dreams come less frequently and she's not been communicating as overtly recently. But her presence is still strong. I've continued to discover more photos in unexpected places, even a VHS tape of her at a fannish con in 1995 that I didn't know we had. Mostly, though, I just sense her here, and I continue to converse with her. The last thing I've done every night this year is to beg her to find some way back, and I don't see that changing any time soon.

I've counted my blessings plenty in the past year, grateful for a home, friends, family, healthy cats, my own relative health. I know how fortunate I am. And I always know how much I've lost. I'm getting more comfortable recognizing both at the same time.

I'm also still pretty tired. Not working let me engage in other activities, but I don't yet have the energy to have a full life -- work, community involvement, friends, home improvement projects, gardening, biking -- all at once. My hope for 2014 is that I will continue to get stronger, be more grounded, learn, and regain enough energy that a year from now, I can live as fully as I'd like to. For now, I recognize the progress I've made in even wanting to live fully, and I'll just enjoy that for a while.

I hope everyone reading this has had a good holiday season, however and whatever you celebrate, and that 2014 is a year of growth and peace for you.

Continuing the conversation

Nearly two and a half years after Sandy died, I think I've found a pretty good balance. I miss her terribly, implore her to return, and cherish my memories. But I'm no longer hesitant to make changes to our home, give away things that have outlasted their usefulness, even plan for the future. That's good progress, I think.

What I can't seem to do is to have a conversation with someone I don't know without mentioning that Sandy died. And if the conversation continues much further, I inevitably talk about Sandy's continuing presence, and ask about their experiences.

What's most interesting to me is that most of the people I share with have also seen, felt, or heard (or smelled!) the presence of a loved one who's died. I think of these conversations as field research, part of my quest to develop some understanding of what actually happens when we die -- and when we live, for that matter. They also reassure me that I'm not delusional, which is a bonus.

Much of Gail and Caroline's lives were related to water, so
in their honor, here's a photo of Sandy and me kayaking in
Friday Harbor several years ago, with Sandy nearly
camouflaged by her ill-fitting lifejacket.

In 2010, a close friend recommended Let's Take the Long Way Home, a book by Gail Caldwell. She recognized our friendship in the one Caldwell honors. I read it this week, finally, and it felt like perfect timing in my life. Caldwell conveys beautifully the bond between close friends, and I enjoyed reflecting on the women with whom I share strong friendships. That alone made reading the book a wonderful experience. But then Caldwell described her friend's dying and her own grief process. My thoughts (and my tears) shifted from dear friends to Sandy. Grief is intensely personal, but so much of it is universal, too. And while there are some differences between grieving a spouse and a close friend, the raw elements are the same. It's overwhelming, physically painful, confusing, guilt-ridden, self-pitying, and all-encompassing. Caldwell captures it all so well, and I just had to share some of it here:

The only education in grief that any of us ever gets is a crash course. Until Caroline died I had belonged to that other world, the place of innocence and linear expectations, where I thought grief was a simple, wrenching realm of sadness and longing that gradually receded. What that definition left out was the body blow that loss inflicts, as well as the temporary madness, and a range of less straightforward emotions shocking in their intensity. 

. . .

The ravages of early grief are such a shock: wild, erratic, disconsolate. If only I could get to sorrow, I thought, I could do sorrow. I wasn't ready for the sheer physicality of it, the lead-lined overcoat of dull pain it would take months to shake.
. . .

What the books don't tell you is that some primitive rage can invade out of nowhere, the only bearable alternative to being with the dead. Death is a divorce nobody asked for; to live through it is to find a way to disengage from what you thought you couldn't stand to lose.

Caldwell also talks to Caroline after her death. Though she knows she may look crazy, "a solitary woman in a scull, smiling and talking to her invisible friend," she continues.

"What's worse," I asked her. "If I talk to you and there's no one listening, or if you're there waiting and I don't talk to you?"

I talk to Sandy daily, usually hourly. Sometimes I interrupt myself to say her name, Sandy Hereld, and then begin again. I remember well that she used to complain that I'd start talking before getting her attention (usually, she was reading) and she'd have no idea what I'd said.

I am grateful that I feel her presence much of the time. But sometimes I question my own experience, wonder how much of it is just my subconscious providing some comfort. Even then, though, even when I doubt, I talk to her. Because, like Caldwell, I'd much rather appear foolish than to risk letting Sandy feel ignored or forgotten.

My non-imaginary companion

Twenty-seven months after Sandy's death, I find I don't need this outlet quite as much. Though never happy about Sandy's passing, and certainly not accepting of it, I've kind of grown comfortable with our altered relationship.

She's still quick with a laugh, and she makes me laugh, too.

While her presence is less explicit than it was shortly after her death, and visitation dreams now come every couple of months instead of weekly, her overall presence is more constant, more subtle, and more dependable.

I'm startled sometimes to realize I've gone 24 hours, 48 hours, or longer without interacting with another living human being, aside from email. In the past, when I worked alone at home and Sandy was at Microsoft during the day, I'd go crazy if I didn't at least get to the grocery store or a bookstore, somewhere where I'd have chit-chat, normal social niceties, or run into a friend and have a true connection. Now, I may technically be alone all day, but I very rarely feel I'm alone. I talk to Sandy all day long, and I hear back from her, too.

As I said, it's not explicit. Her presence is companionable, and sometimes it's stronger than others. Mostly, I just know she's paying attention. Sometimes I know how she's responded, though the words weren't actually spoken. For example, when a friend emailed that she'd just broken off a long-term long-distance relationship, I was chatting to Sandy about it. I said, out loud, "It's amazing they made it as long as they did. I could never handle a long-distance relationship." And the response I got from Sandy was "You're in one right now." I didn't hear the words out loud, or even in my head. It was more that I knew they'd been said.

A few days ago, I was reading a blog about suspicionless surveillance and efforts to curtail it. I read the bit out loud and said something in agreement with the surveillance being horrific. I read it out loud specifically because privacy concerns had been so important to Sandy. But what I got from her, humorously, was the response that she doesn't suspect me and yet she watches me all the time now. Again, I didn't hear the words, but I knew the response came from her.

I have plenty of my own revelations, but Sandy's responses fall into my consciousness differently.  They're clearly her thoughts, not mine.

I've been taking a break from work for several months, and it's been restorative. I'm doing a lot of work on the house and garden, spending time with friends. Most important, though, I've dived into several community projects and workgroups that energize and inspire me. I feel like I'm catching my breath. I'm looking forward instead of backward so much. I'm excited about having solar modules installed on the roof in a few months, and finally getting the house retrofitted for earthquakes. I'm rearranging some of the garden beds, and revving up the compost bins. I'm comfortable changing and improving the home we created together.

In short, I'm living after feeling stalled. And I'm pretty sure I can do that precisely because I know Sandy's right here with me, hovering on some parallel plane, ready with wit and opinion and advice and, above all, love and support.

Two years

For the past five weeks, I've been aware of where we were each day in 2011; what was happening; whether Sandy was conscious, in pain, receiving treatment; who was with us; what we thought would happen next and what actually did (the two rarely matched).

Last year, I relived those weeks, experiencing them bodily. I expressed the emotions I'd been unable to give life the first time around, when I needed to be attentive and focused, and when I was reassured -- able to ignore reality for a moment -- by Sandy's presence and Sandyness. Last summer, those five weeks were hard.

I didn't know what to expect this year, but I kept my calendar open. I gave myself permission to focus on the past or to stay in the present, to sit and stare at a wall when it seemed like what I needed to do or to be active and engaged when that felt appropriate. It's been bumpy, and I'm clearly still working through the backlog of emotional response from 2011. But I didn't relive the events in the same way.

Instead, I tracked those events subconsciously, and sometimes consciously: I always knew what had happened. I always knew what day of the week it was. That is, I knew what day of the week it had been in 2011, and so I've been confused about what day it is in 2013 for much of July. In many ways, it's been hard, and I've been rocky emotionally, sometimes inexplicably irritable and other times despairing. I've keened and I've moaned with pain. But not nearly like last year.

Last year, too, I expected a revelation to come with the anniversary of her death. Given how much most grief resources and even people's stories always seem to talk about the first year, I thought I might have a sort of graduation from grief. (And surely I deserved honors, simply for surviving.) There was no such moment.

This year, though, was different. Last night, as I felt the hours passing, growing closer to the two-year mark, I was restless. I wanted to do some kind of ritual, something meaningful. But I didn't know what it should be, and I also, contrarily, didn't want to focus on her dying. I was ready to return to gratitude for her life. I talked to her, sobbed, felt sorry for myself, opened the blue bottle and stared at the bright white of her ashes, ached some more, and then read the book I'm in the middle of. (I'm reading Salt, Sugar, Fat - not exactly an obvious choice for death's anniversary, but well-written and engaging and important.) I turned out the light at midnight, an hour and 20 minutes before she died. I was asleep at the moment of death. That is, I was asleep at the moment that was exactly two years after the moment she died. When I woke briefly at 3:30 a.m., I looked at the clock and thought, "oh good, she's dead."

It's a weird thing to think "oh good, she's dead." Because of course it's not what I meant at all. I wasn't happy that she was dead. I was relieved that the countdown was over, that I no longer had to worry about whether I was honoring her appropriately with a ritual, that I could focus on something other than my grief.

This morning, I woke thick-headed and lay in bed gradually awakening. As I snuggled with the cats, I looked at one of the bookcases in the room and thought, as I have  hundreds of times, that I'd like to catalog the 3000 or so books that are in this house. What was significant was that I specifically thought, half-awake, lying there, "I really want to catalog my books." My books. Not our books. I bought many of them; Sandy bought many; some we bought together. And even though they all became legally mine when she died, I haven't ever been able to bring myself to think of them all as mine. But now, apparently, something shifted. (It didn't come naturally enough that I didn't notice the pronoun, however.)

I lay in bed testing the personal pronoun, reciting "my books, my bedroom, my house, my garden, my neighborhood, my cats, my kitchen, my washing machine, my yoga studio, my shower, my office, my friends, my life." I laughed at the last three, which were the ones that came most easily. It's always been my office, and while we often spoke of our friends, I've talked about my friends frequently. Same with my life. So they felt like the ones that didn't quite belong in the list, but also like role models for eventually feeling okay about sole ownership of all of the others.

Yesterday was an odd and sometimes challenging day emotionally. But today has been surprisingly good. I found my relief and higher energy levels curious until I realized that I'm no longer diverting my energy into tracking the past. In 2011, my senses were heightened during the weeks that Sandy was dying. I was very focused on her and on the present and on holding on to our time together. It makes sense to me that those moments were burned into my psyche. But after she died, my senses were numbed. The pain was excruciating as it was, and if I'd been focused on the present so relentlessly, I don't think I'd have survived the experience. I have a vague sense of what happened in the week that followed Sandy's death, and I continue to be grateful for the generosity and care of good friends who ensured that I had the space and safety to grieve fully. But I don't have any psychological compulsion to track those days or events. They're part of the faux life, which is how I think of the past two years. So my energy is freed. My brain feels clearer, too.

I have been looking to the future today, and bouncing around in the present. Gardening, walking happily to the library, chatting with neighbors, talking to friends, open to possibilities for the ways I might spend the rest of my life. It's refreshing. I've shed tears a few times, but then, before the five-week period started, I was still crying a couple of times a day, missing Sandy, mourning the years we were denied. I don't expect the grief to vanish, and I wouldn't want it to. But it's back to a more integrated part of my life -- and this energizing relief is a nice surprise.

I haven't checked in with Sandy's close friends or family today, so I don't know how everyone else is doing. Whereas the 18th is the difficult day for me because my perception was that she died the night of the 18th, I know that for many people today is the harder day, because they learned of her death in the morning. I hope this year is a little easier for everyone, and that those who've been experiencing a countdown (and I know there are at least a few) can also appreciate
a sense of relief now.

Tears of relief, tears of despair

We attended a good friend's wedding in the summer
of 2006, in the midst of Congressional hearings
that dehumanized us, just before they passed DOMA.
I was happy for my friend, but bitter, as it felt like
salt in the wound. That was the last legal wedding I
attended until same-sex couples could marry.

Just months after Sandy and I began our relationship, Congress passed DOMA in the summer of 1996. I'm not self-important enough to think that legislators were threatened specifically by our relationship, of course. But it was a slap in the face. We were jubilant about our new relationship just as it was condemned nationally. It was hard not to take it personally.

Here's a little background. The Defense of Marriage Act (DOMA) comprises three sections: Section 1 just says the act can be called by a shorter name (no one cares about that); Section 2 says that states don't have to recognize other states' marriages if they're between people of the same sex; Section 3 says that the federal government can't recognize same-sex marriages.

Today's decision struck down Section 3, so now legally married same-sex couples can receive federal benefits. There are 1,100 or more of those benefits, many having to do with taxation, immigration, and Social Security. But they include things people don't talk about as much, too, like not having to testify against your spouse. Not a benefit most of us have to use, but for those who do, it's critical.

Section 2 wasn't challenged in the Windsor case, so it remains standing for now. That means that those of us fortunate enough to live in states that issue licenses to same-sex couples now have full federal rights, as long as we stay in our home states. But other states still won't have to recognize our marriages, so it remains risky for such couples to travel to other parts of the country. And it's unclear how many of the federal benefits will be available to people who marry in one state but live in another.

This is all by way of context. What's prompting me to write is my own response to the decision.

I'd been dreading it. In part, because I was afraid the Court would break my heart, the way the Washington State Supreme Court broke our hearts in 2006. But I was pretty sure I knew how the Windsor (DOMA) and Perry (Prop 8) cases would go; most everyone predicted today's decisions accurately. It was my own reaction that I couldn't predict.

When our state legislature passed marriage equality in early 2012, I felt despair amidst my feelings of joy. When we approved Referendum 74, putting that marriage bill into law last November, I felt relief but also, again, despair, and I was surprised that it also seemed so anti-climactic. And so this morning, when I peeked at the computer to see how the decisions fell, I probably shouldn't have been so surprised by my response.

My very first reaction was relief. I felt tension drain from my entire body, and my first tears were of joy. But almost within seconds, I was keening.

The Windsor decision conveys real, tangible benefits, but it also affords dignity and recognizes the humanity of a huge swath of people who have been historically despised and discounted. Sandy bore the burden of homophobia as much as any of us, and I want desperately for her to have had the opportunity to feel that burden lifted in part by this acknowledgment of our relationship as legitimate and valuable. She deserved that. She still does.

My sobbing ebbed as I gradually moved from viewing the decisions from a place of self-interest to recognizing the amazing day this is for our entire country. And not just for LGBT folks. Like many people, when I think about what the United States means, those moments that my chest swells with patriotism, I think of the Civil Rights Movement and the great strides we made in affirming the equality of people who had been grievously wronged. I think of women gaining the right to vote nearly a hundred years ago, following a long and contentious effort to be recognized as full persons. I think of everything we've done as a country to move closer to living up to our ideals, to correct the wrongs that have been perpetuated historically, and to, yes, become a more perfect union. Today's Supreme Court decision was one of those moments, and that's definitely worth celebrating.

I know Sandy's aware of the decision today, and I know she must be pleased by it. But I don't know whether she feels relief and a sense of affirmation, or if she'd left those burdens behind when she died. Either way, I wish we'd had this moment while she was here, alive, and could drink it in. If she had to die, I wish she'd died knowing that our marriage was legal and fully recognized, that I would have been treated as a spouse instead of a stranger when it came to Social Security and retirement account rollovers and countless other little things that came up.

But then, as we move through the second anniversaries of the last few weeks of her life, I find myself wishing a lot of things.

(Two years ago today was Pride Sunday. We were at the hospital, but she didn't have radiation that day and she felt a bit better, was excited about going home the next day. We were still on a high after the New York state legislature had passed a marriage bill at the end of that week. Sandy wanted us to go to New York to marry as soon as it went into effect, never imagining that she would be dead before that happened.)

The times she didn't die

Sometimes when I'm feeling sorry for myself, I flip it around and think about just how lucky I am to have had Sandy for as many years as I did.

I think about all the times I could have lost her.

The danger her gallbladder attacks posed while she waited for insurance to kick in so she could have surgery.

The car accident that pretty much destroyed the working components of the car but left Sandy unscathed except for embarrassment. Especially since I'd feared for weeks that she'd have an accident of some kind, given her deepening depression. I felt such relief that the event had occurred and she had survived it.

The terrifying seizures she had in January 2004, full-blown tonic clonic seizures (what used to be called grand mal) just a few hours apart, which turned out to be a reaction to medication and which caused no lasting harm (except to my peace of mind).

This was the third day after her accident in 2005.
In earlier pictures, we documented her injuries
and her expression was grim. By day 3, she was
able to smile about how quickly she was healing.

The infections that raged in her body before and during chemo in 2006. Pumping toxins into a body can be very deadly, and the drugs certainly tried to take her down. But she came through it.

The bike accident in 2005 that occurred when a car cut her off, shoving her into the curb. She was bruised, bloody, and in shock, but she got home safely and healed.

The collision in May 2010, when a driver pulled across the bike lane as Sandy was entering the intersection, heading downhill at about 20 mph. Her injuries were painful and they left her in worse shape for the upcoming cancer fight, but the collision itself did no obviously lasting damage.

All the times she could have died before we even got together, especially the time she almost drowned.

It wasn't that Sandy's life was particularly precarious. We all have similar lists of near-misses, whether from injury or illness: the traffic accidents that almost happened or that could easily have been worse, the tornado that hits the house two blocks over, the fall down the stairs, the disease caught just in time. We're fragile beings. These elaborate machines we call our bodies are delicate, relying on tenuous relationships between each other and the world. It's really quite amazing that we are, in fact, so resilient.

It may seem odd that I cheer myself by remembering times of crisis. But the body memory that comes from each is less about the fear during the crisis and more about the relief that came after. That full-body sensation of gratitude when I compared what was with what I feared might have been.

Even on June 16, 2011, we basked in relief that she hadn't had a stroke, as we'd suspected. If someone had told us she'd die just 33 days later — and suffer immeasurably during many of the days to come — we'd have celebrated less. But like her doctors, we thought everything was going according to plan, except for a complicated migraine that appeared to be gone now. She was still Sandy; her brain was still her own. I hadn't lost her, and she hadn't lost herself.

So yes, I wish desperately we'd had another 50 years together — and I'm bitter, definitely, that we won't have that time. But I am honestly incredibly grateful for every day we shared. And that perspective is incredibly cheering.

Ambivalence

I just handed off another chunk of work, crossing off one more item that I need to complete before my current client commitments end on May 30. I'm taking off the entire month of June, maybe longer, and I'm giddy at the thought of spending lots of quality time pulling the garden into shape, catching up with friends, and completing long-neglected tasks around the house.

I'm also nervous.

I need a break. I returned to work a few weeks after Sandy died, and though I haven't always worked long hours, I've had at least one project in progress every day since. My energy level is still not up to par, so I've put off things that are more personally meaningful in order to meet my work commitments. I'm ready for a vacation.

So many of our plans had to be reworked in 2010. Because
Sandy had been having trouble catching her breath while
cycling, we'd already changed plans from biking to Moses
Lake on Memorial Day weekend to biking to Snoqualmie
Falls for the night. After her bone scan showed a femoral
tumor and she couldn't bike at all, we just drove there for
a getaway. Not what we'd originally hoped for, but it did
feel like a very welcome mini-vacation after all.

But I don't trust the universe to give me this time for rejuvenation. Three years ago, I planned a sabbatical from work. I thought I'd take two months to do all the things I'm hoping to do this June. (In fact, I still have the spreadsheet of all that I'd planned to accomplish then. Does that make me sound terribly nerdy?) In 2010, my work projects were to end by the first of May, but one slipped out a few days, so it was May 6 that I handed off the final product. And it was the night of May 6 that we had an answering machine message about suspicious spots in Sandy's lungs on a chest Xray. I was glad not to have to work for the next couple of months so I could care for Sandy during a very difficult time, but I didn't get my sabbatical.

In 2011, I stopped working in mid-April and planned to avoid any new projects until Sandy had successfully transitioned to a new chemo drug. I didn't want to commit to anything major because I wanted to be flexible in case we ran into any snags along the way. But I expected to have plenty of time to garden and catch up on home maintenance and the like. Instead, much of my time in late April, May, and early June went to trying to ease Sandy's pain; each time we finally figured out how to manage one symptom, a new one would emerge. We did have a vacation, in name, but it wasn't much of a vacation for me. And then, of course, we were in the hospital and in hospice and, if anything, my long list of neglected tasks grew. I didn't make much progress on them in the weeks after Sandy died; I was doing well to eat three meals a day, get to therapy, and spend time with comforting friends. And then I started working again by mid-August.

So now I yearn to have days that are all mine, days of losing myself in tasks enjoyed and completed, days of check marks next to to-do lists. And I'm less than a week away from that reality. Or at least, that's the plan. But I can't help feeling anxious about what happens when I dare to plan to take some time for myself.