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.

Changing the conversation

The main goals of the National Breast Cancer Coalition's Deadline 2020 project are to prevent primary breast cancer, so that people wouldn't develop it in the first place, and to prevent metastasis, saving the lives of those who have already had it, past or present.

The work to achieve those goals requires many dedicated players. Researchers need to do their thing, collaborating in new ways, exploring new avenues, and taking a higher-level view of the problem to be solved. Politicians need to recognize breast cancer eradication as a priority, using their power to influence the way resources (not just money) are allocated. Foundations and government entities need to embrace new models for funding and support as the scientists wade into new territory.

Sandy's oncology infusion nurses quickly became our friends
during her initial treatment and again when she had metastatic
cancer. But it would be great to have met them under different
circumstances, and they'd certainly welcome the opportunity
to successfully prevent metastasis.

But all of this is dependent on changing the conversation. As long as people think we're making significant progress, while the mortality rate remains nearly steady, we don't have the public pressure we need to make everything else happen. It's unfortunate that the focus on "awareness" has actually made people less aware of the facts.

That's why I was pleased to see the cover article in this week's New York Times Magazine, titled "Our Feel-Good War on Breast Cancer." I recommend reading it and spreading it around. You'll find it here: http://www.nytimes.com/2013/04/28/magazine/our-feel-good-war-on-breast-cancer.html?smid=pl-share.

Peggy Orenstein did her homework well, and she describes the complexities of diagnosis, treatment, and survivorship eloquently. Though she didn't mention National Breast Cancer Coalition, she offered the same message NBCC has been working to get out for years now. It's encouraging to me to see it starting to take hold.

One of the particular challenges is communicating that breast cancer is still very deadly and we still know very little about how or why it behaves as it does while at the same time helping women understand that their personal risk is much lower than most women assume. Reassurance + urgency is a difficult equation.

Part of what makes it so tricky is that the pink-ribbon brigade has been delivering a message of reassurance and urgency of its own. They've led women to believe that every woman is at high risk for breast cancer but that we're making tremendous strides, and that somehow having a mammogram is protective. Not very helpful for making real progress to end the disease.

Orenstein's article is a great source of information for anyone wanting to converse knowledgably about the subject. Keep it handy to educate the next person you hear say that "early detection is the cure" or any of the other misleading statements people like to share. It's time we channel all that well-meaning energy into effective change. We may not be scientists, politicians, or foundations, but changing the conversation is within our power.

The bluest season in the garden

Tucked into the mailbox yesterday, on a scrap of notebook paper:  Thank you for creating such a beautiful garden! I love walking by - it's one of those small joys that make up a good day.

The note was written in pencil, with no signature, no contact information. Just an anonymous gesture of gratitude that lifted my spirits immeasurably.

The front yard was Sandy's territory. She fussed over it, taking pictures throughout the season so that she could fill in gaps the next year or otherwise think about the layout. I knew passersby loved our garden. In fact, one of the neighbors figured out that something was wrong with Sandy when the yard fell into disarray in the summer of 2011. I told him after she died that I didn't know how I was going to keep it going without her.

Then I realized last summer that the Japanese Maple, the centerpiece of the front yard and the only part of it that had really been my doing, had succombed to verticillium wilt and had to go. I thought I'd have to rethink the entire front yard, and that I'd necessarily erase Sandy's work. I was wrong.

A different time of year, clearly, with the dahlia blooming, and
it was more than a decade ago. But almost as soon as Sandy
started planting the front yard, passersby began to gush over it.

The Japanese Maple is gone now. I miss it. I've bought a ceanothus to go in the space it used to occupy, though, and I'm hopeful it will get enough sun there to be a beautiful source of blue flowers. Meanwhile, I've discovered that Sandy's garden continues to thrive. The hundreds of bulbs she planted sprout and bloom right on time, in wonderful succession, and many have naturalized. The perennials do their thing on cue, and the self-seeders have self-sown with abandon. Like the anonymous note-leaver, I love walking by the front garden. Sometimes, I just stand out on the porch and drink it in, especially right now, during it's bluest season.

The galanthus poked up first, and then the white forsythia bloomed radiantly as the daffodils took up their stations. Soon, crocuses appeared, and muscari bordered the garden and clumped in various spots within it. The Japanese snowbell trees started to leaf out, and the tulips peeked up. Chinodoxa and several other small blue flowers whose names I don't remember filled in the planting strip under one of the trees, and forget-me-nots clutter the area that had been under the Japanese Maple. The wood hyacinths have just come into full bloom, and the camassia are starting. The bluebeard is tentatively developing its new leaves. Really, aside from the red and yellow tulips, it's a blue wonderland out there.

I have made some changes. I removed the dead tree and another odd yellow-green shrub that Sandy planted a few years ago but that never really worked where it was. I also yanked out most of the daylilies that had grown so thick that they never even bloomed anymore - they just sent up greens and then wilted messily. In their spot, I've added blue-flowering corydalis, a delicate plant I've always loved and that Sandy liked too. And I've planted some santolina, a wonderful fresh-smelling shrub that we used to enjoy in the front yard years ago.

I'll keep puttering out there, weeding and replacing things that fail. But the bones of the garden remain as they were when Sandy tended them. It's a huge gift to me, as I didn't think I'd have the energy to completely redo the front yard this year anyway. Such a joy to realize I don't need to. And so wonderful to know that Sandy's efforts are still giving pleasure to others.

Saving voice

Neither Sandy nor I have ever been fans of cell phones. But when we started biking longer distances—and occasionally miscommunicating about our intended route—we decided they made sense for emergencies. So Sandy went off to the AT&T store and bought us a couple of gophones. We put a little money on them and mostly left them off. However, they were incredibly handy on those long bike rides, and increasingly, we used them to call home when one of us traveled without the other.

I used mine most extensively when we were at the hospital and then at Bailey-Boushay. In fact, I had to retrain everyone after she died to go back to using the landlines to reach me because for about five weeks, the cell phone was the best way to get to me. I even started texting people because I could do it without waking Sandy. At one point at Bailey-Boushay, she asked me what a sound was, and I replied it was just the phone telling me I'd received a text. Her eyes got wide and she looked at me accusingly. "When did you start texting?" I wasn't completely sure whether she thought I'd betrayed our anti-texting bond or if she was just astonished, the way I was the day she came home in 2004 and told me she'd accidentally started jogging and discovered she liked it.

Anyway, I burned through the prepaid time on my phone, but when Sandy died, there was still a chunk of time on hers. I decided to take her phone with me on bike rides so that I could use up some of the money on it.

At one point, I had a visitation dream in which she and I were talking about how she was going to return. She seemed to think she had it figured out; it had something to do with voicemail. In the dream, I told her I didn't think it worked that way. A few days later, I dialed into the voicemail on my cell phone to see if anyone had tried to reach me at that number instead of the landline. One of the messages was a pocket-dial, a really annoying one. Then I realized I was hearing my own voice. It was clear that I'd pocket-dialed my cell phone from Sandy's, but I couldn't figure out at first when it had happened. So I opted to listen to the envelope information about the call—and I heard Sandy's voice saying her name. I hadn't remembered that she'd recorded her name on the cell phone greeting (and she didn't record a full greeting, just her name). She didn't come back in the way that I wanted her to, but I was thrilled that some small piece of her was still here.

As the cellphone prepaid minutes came close to expiring each time, I refilled the phone. I kept thinking I'd call AT&T and ask for the digital recording, but I didn't have the energy. And besides, there was all that money on the phone to use up. So friends got used to me using Sandy's cellphone on bike rides and for occasional texts. (They didn't necessarily change the way the phone number was identified; one friend said she's enjoyed receiving texts that appear to be from Sandy.)

Last month, I accidentally let the account expire. I missed it by one day, losing about $150 worth of time that had accumulated as I'd refilled it repeatedly. But I didn't care about the money; I was desperate to get the recording of her voice.

I called AT&T and the people I talked to at first told me that I couldn't get the recording because the account was a gophone account. Eventually they acknowledged that they had no idea how to do it, but would if they could. They suggested I call a couple of other departments that were equally clueless. The best anyone could suggest was that I call the cellphone number, play the greeting on speakerphone, and record it with whatever device I could find. Meanwhile, they assured me the greeting still existed, even though I couldn't hear it when there was no money on the account.

I put $10 on the account to buy myself a month's worth of time, and was reassured when I called the number and heard her voice again. I tried the speakerphone recording route, but wasn't impressed with the results. I thought about asking friends to call from their smartphones with various recording apps, but first I searched the Internet.

I don't know why it's so hard for AT&T to provide the digital file. Or for any phone company. They have it, clearly, and I would happily have paid $25 or more for the file. The question must come up occasionally, because I quickly discovered online that my request is not that unusual.

Happily, I also learned about a service called SavemyVM.com. You give them the information about the phone number and the messages you want to save, and they use high-quality equipment to capture the recording. They promise to get it to you in a day or two; I had Sandy's greeting an hour after I submitted the form, on a Sunday, no less. And I was happy with the quality.

She's still here, in some important ways.

I have the file now, backed up in a couple of places. I don't feel compelled to hear it all the time, but when I am feeling melancholy or bereft, I can play it, just as I play the other audio and video recordings I have and just as I look at photos or reread old emails.

Her cell phone account once again has no money on it. The AT&T folks were kind enough to preserve the account with her voicemail greeting for up to a year, so that I could add more money to it at any time in the next year and her voice would come forth again. But I have the digital copy I need now. I'm retiring her phone and returning to my own.

I feel a weird sense of loss about it. On one hand, the feeling of loss makes sense because I'm giving up one more thing that was hers. What makes it weird is that she didn't care for cell phones, and the one she ended up with was a particularly annoying model that replaced her original phone when she lost it. She'd feel no melancholy about letting this one go. Still, she carried this phone with her as she bussed to appointments the last year of her life, and occasionally, she'd call me from it with a question or just because she missed me. A few times she called as she walked home from a bus stop, bored and looking for distraction. I'd chat with her, hearing her exchange pleasantries with people and dogs, listening to her commentary on the landmarks she passed until she got to the front door, and then I'd be there waiting for her, ready to embrace her when we ended the call.

Meandering thoughts on the SCOTUS cases

The two of us with our canine friend, Bert, who was
wriggling at that moment, in 2002 in Missouri.

I've listened to the Supreme Court oral arguments in Hollingsworth v Perry (the Prop 8 case) and U.S. v Windsor (the DOMA case) this week. There are moments of joy and relief in them, but especially in the Prop 8 case, there are plenty of moments that are hard to listen to. Sometimes I want to say to the justices and the attorneys, "You do realize we can hear you, right?" We being the "homosexuals" whose fair treatment may or may not bring about the downfall of civilization. As if we aren't part of civilization. As if we haven't already formed lasting, committed relationships that benefit all of society. As if recognizing those relationships would cause straight men to beget more children out of wedlock. The tortured logic would be hilarious if it weren't at our expense.

Yes, we've made tremendous progress. A few months after Sandy and I got together, Congress passed the Defense of Marriage Act, fearful that Hawaii might recognize same-sex couples' humanity. Even though, at the time, we didn't personally want to marry, DOMA was a slap in the face. The federal government was so threatened by our relationship that they declare that they would never recognize it. It's hard not to take that personally.

While Congress was all in a dither over Hawaii's Supreme Court's action, most of my straight friends and family had no idea the DOMA debate was going on. It felt like the LGBT community was very much on our own.

If you've never been part of a hated minority, it can be difficult to understand what it's like. We have Pride parades specifically because so many of us have been taught to be ashamed of who we are. That's changing for younger folks, thank goodness. But Sandy felt a deep shame from early childhood, when she first started to have what she referred to on her death bed as "gay thoughts." As an adult, she was out and proud in some contexts and apologetic about her sexuality in others. It's a common ambivalence. For most LGBT people, coming out to ourselves is challenging, and then coming out to each group of people in our lives brings its own stresses. We fear judgment. We fear rejection. Underlying all of it, frankly, we fear violence.

As our struggle for equality has progressed, we've gained amazing straight allies. Indeed, I felt a flush of gratitude when I saw how many of my non-LGBT friends and family members had posted in support of marriage equality this week, in anticipation of the Supreme Court oral arguments. I desperately want Sandy to be here, to enjoy the feeling that so many people have our backs.

But mostly, I want to reach out and touch her, to have the physical reminder that this relationship is valid, strong, right. That our love is no threat. 

The rhetoric is a little less hateful than it used to be. And for an entire generation, same-sex marriage is no big deal and anti-discrimination laws that protect LGBT people are a no-brainer. But the Supreme Court is afraid of removing discrimination too quickly. They're asked to determine whether a ban on same-sex marriage is constitutional, but they're more concerned with deciding whether the timing is right. It's always the right time to do the right thing. How many people have to die while they wait for the right to marry the person they love? I'm bitter that I became a widow before I was legally married; it's supposed to be the other way around.

On the other hand, it's kind of sweet to be in a position where one of the primary arguments against declaring DOMA unconstitutional is essentially that it will probably be repealed by Congress in the near future anyway. I understand that Clement was mainly asserting that the LGBT community has political power and so the case should not be afforded heightened scrutiny, but I enjoyed listening to the argument all the same.

It's weird to have a personal stake in these cases, and yet have that personal stake be less immediate than it should be. If Sandy were here alive with me, we'd be married under Washington law, and we'd be excited by the possibility that we might finally attain the federal rights and responsibilities of marriage this summer. Instead, I know that our marriage will be recognized on June 30, 2014, and that at some point in the future, federal recognition will go into effect, likely long before I need to make decisions about whether to access Sandy's Social Security benefits, as her widow, instead of my own.

There are many people I can talk to about the court cases, but there's only one person who understands exactly the mish-mash of emotions I feel when I listen to the arguments and read the analysis, and she died 20 months ago.

It's a bench!

Back in 2002, we admired the creative benches at the
ceanothus garden, part of the Santa Barbara Botanical Gardens.
As I recall, most of them were dedicated to individuals too.

I received word at the end of September that the Mercer Island Parks Dept was pouring the concrete for Sandy's bench and the bench should be in place within the next few weeks. However, nothing about the process had gone according to schedule, so I decided to wait a month or so before visiting the site. I feared making a special trip and being disappointed.

Then the rains came. And I was sick. My schedule was full; the weather was crappy; I didn't have energy. Several times I thought I'd bike across the I-90 bridge on my way home from therapy, since my route took me to the bridge tunnel. I even took a camera with me. But each time, the cold wind kept me focused on getting home.

But spring arrived in Seattle yesterday, and. like everyone else in the city, I knew I had to be outside. It was the perfect day for a ride across the lake.

The bench is there! I was delighted as I approached to see that there were people sitting on it. The plaque is fine; her name is spelled correctly and there are no words missing. I'd worried that the location of the bench might be off because they'd had to shift it to the other side of the short walkway due to grounds maintenance, but the placement works very well. I was relieved to be completely and utterly pleased.

I took several photos, and then I sat on the bench, satisfied. Pedestrians and cyclists alike can rest here after the short punishing climb from the bridge. Some of them will read Sandy's name, maybe even say it aloud. Some will read the words, and maybe a few of them will leave the bench feeling refreshed and reminded of their intention to enjoy the journey as much as the destination.

Meanwhile, it serves as a permanent memorial to a woman who wanted desperately to be remembered. She doesn't have a gravestone; I can't afford to donate a hospital wing in her name. There are other tributes that bear her name, primarily in the world of fandom, and I am grateful for each of those. But the bench is a physical touchstone. I'm glad she asked for it, and I'm especially thankful that I was able to have it installed in a place that Sandy always paused to catch her breath, have a snack, appreciate the sense of accomplishment that crossing the bridge brings, and enjoy the view.

Directly across from the bench is an open field, with trees
and Lake Washington in the distance. As I sat there for a
few minutes, I saw people playing with dogs, parents flying
kites with their children, and a small girl with shaky legs
toddling to her mom on the grass. It's a happy-making spot.

If you'd like to visit the bench, you'll find it on the I-90 trail on the west side of Mercer Island. Just after you bike or walk across Lake Washington on the I-90 bridge, the trail immediately climbs around a bend. The bench is on your right just as the trail levels off, across from the pedestrian entrance to the park's open field. If you prefer to drive, head eastbound on I-90 across Lake Washington, and then take West Mercer Way (exit 6), turn left onto West Mercer Way, and then turn left into the parking lot. From there, walk towards the I-90 trail (south) along the sidewalk that borders the field and you'll see the bench. The open field is apparently called Area C of the Park on the Lid.

Searching for blame

We don't know yet what causes any breast cancer, let alone the specific form of metastatic triple-negative breast cancer that killed Sandy. But I'm still trying to make sense of it all, still trying to figure out the culprit. Still trying to figure out what I did wrong.

I realize it's both ridiculous and self-important for me to assume that I'm responsible for her illness and death. It's not a rational conclusion, and I don't consciously believe I'm to blame. But I've always had a strong internal locus of control. Sandy mocked and pitied it, in fact. My first response to anything that goes wrong is to try to determine what I could have done differently, how I messed up.

That's useful as a migraineur. Did I not get enough sleep? Eat too much sugar? Exercise too little or too much? Sometimes I can find patterns that help me prevent future pain. But sometimes we just get colds or headaches. Sometimes a congenitally defective heart valve tightens as predicted. And sometimes people get cancer. Bad things happen to good people. It's a cliche, after all.

I don't actively blame myself for Sandy's illness or death. It's more that I'm always alert to clues.

So when I first became aware of the real threat radon gas poses in homes across the country-- not just hot spots -- something clicked. Radon gas, a natural byproduct of uranium breaking down in the soil, seeps into homes and accumulates. It has a short half-life, but if the levels get high enough, it's incredibly toxic. You can't see it or smell it. It doesn't matter whether a house is well-built or poorly constructed. One house can have high levels of radon while the house next door has none. It's estimated that one in fifteen homes in the country have dangerous levels of radon.

Sandy in the fresh air in 2010. She was either
about to throw or had just thrown a bocce
ball, hence the expression on her face.
(High-stakes game, of course. Playing
for bragging rights and all.)

Radon is the leading cause of lung cancer in nonsmokers. Grumpus, the Maine Coon cat who decided he should move in with us, lived in our basement for three years while Roo and Prudence, our old lady cats, reigned upstairs. It's not a horrible basement; it's a finished apartment with our TV room and the kitchen I use for starting seedlings. We spent time with Grumpus down there, and his life wasn't that bad. Four years after he was freed to occupy the entire house, he died of lung cancer. He'd had IBD and other problems, but the lung cancer was mysterious. So last month, the more I learned about radon, the more I was certain that his time living in the basement had caused his death. And that it had probably contributed to Pico's leukemia. And, of course, to Sandy's breast cancer. (There's no known link between radon and any cancers other than lung cancer, but I'm very good at making leaps.)

So I sent away for a test kit. Meanwhile, I prohibited the cats from spending time in the basement, and limited my exposure, too, until I knew just how deadly the air was. I set up the kit within hours of receiving it, and I left the filter to absorb its evidence over the course of a week. I sent it off and then nervously awaited the results.

Turns out, Grumpus's lung cancer is still a mystery. The radon levels in the basement are lower than that found in fresh air outside. It's safe. It's possible, of course, that the levels were significantly -- even dangerously -- higher ten years ago when Grumpus lived full-time down there. But it seems unlikely to me that the gas levels would be so low now if that was the case then. We don't know how old he was when he came to us, but we suspected he was between seven and ten years old, so he may well have spent years of his life in another house that did have high radon levels. Or not.

I was relieved. Thrilled that I didn't need to do any mitigation, that I could start my seedlings this spring without concern, and that I could let the boys go down and have their adventures without concern. And of course I was relieved that my ignorance about radon hadn't caused any harm. But I was also disappointed. I like answers.

Someday we may know what carcinogen Sandy was exposed to in her youth, or what combination of lifestyle factors triggered some genetic predisposition. Until then, I'm scared to find out that there's something I neglected. Worse yet, I fear there might be something I actively did that caused Sandy's cancer or its metastasis. But I want the answers more than I want absolution.

Space for grief

I saw a play last night, Next to Normal, part of a season-ticket package. I bought a pair of season tickets last fall with a triple purpose: to support the local theater, to ensure I'd get out into the world even when long nights make me less likely to leave the house, and to force myself to invite someone to join me. Three plays into a four-play run I've learned how foolish that last goal was.

I think I've been relatively successful at navigating grief this past 18+ months. But on reflection, that's because I've primarily listened to my instincts, not "forced myself" to do anything that I don't feel like doing. It's not that I haven't done painful things, or moved out of my comfort zone. But when I make progress, it's because I do what actually feels right, not what I think would be good for me based on some external calculation (e.g., the "keep busy" school of grief management).

I chose a photo pretty much at random this time. This was us
in Moses Lake for Sandy's mom's belated birthday
celebration, summer 2010, Sandy's hair sparse from chemo.

So here's how the whole pair of season tickets thing has worked out. Each time, I've known the performance is coming up. I've known the dates for all four since September, I think. I consider who might enjoy the show, who I'd like to catch up with. Time passes. I resent that I have to invite anyone, that Sandy isn't going to use the ticket. I miss having my default companion. More time passes. A few days before the show, I start making apologetic phone calls or sending email to people, one at a time, asking if they can join me. Turns out most people don't hold their Friday evenings open just in case Brie has a play ticket they could use. My resentment starts to turn to despair that I don't have a social life. It's really quite pathetic.

The upshot is that I was able to find someone to attend the first play with me, and that was great. But for the last two, one ticket has gone unused. I'd have gone alone regardless, but it's worked out much better than it might have. Two of my closest friends also have season tickets for the same performances, so I've ended up enjoying the evening with them each time instead. But the lesson I've learned is that trying to force myself to do something I deem "good for me" is likely to lead me to greater despair.

The play was pretty good, a little weird: a rock musical about manic depression and its effect on a family. More broadly, I interpreted it to be a cautionary tale about the destructive effects of suppressed grief. I suppose that's why I found it less depressing than many in the audience (I spoke with a few young women who sobbed through the entire second act). I guess I found it personally affirming. See what I've avoided by grieving openly and honestly? See how healthy I am? How okay it is that I still scream for Sandy most days? That even as I reshape my life, I'm constantly aware of the gaping hole left in it? Of course, as I watched the play, the seat next to mine was empty, reserved for the holder of the unused ticket. My friends sat directly in front of me, and we chatted before the play began and during intermission, so I didn't feel bereft and alone. But that empty seat next to me seemed fitting, appropriate. There's still space for Sandy, for my memory of her, and for my grief in my life. And I believe that's a healthy thing.

Eighteen months

I was disoriented when I woke yesterday morning. I'd slept well and felt okay, but it took me several minutes to figure out that it was Friday. As the day progressed, I tried to write the date incorrectly multiple times, had difficulty holding the 18th in my head. I also became agitated. I assumed I'd picked that up from my mother, as she was understandably frustrated by her lack of independence as she recovers from hip replacement surgery.

As planned, I went out with friends for dinner and a local production of Hedwig and the Angry Inch (good but a bit loud). I enjoyed spending time with my friends, and I enjoyed the musical. However, I increasingly felt a sharp longing for Sandy, and by the time I got home I felt empty and lost, sinking into self-pity.

Unable to face the prospect of the empty bed, I self-medicated with potato chips, a few TV comedies, and a mind-numbing game on my iPad. Hours passed before I forced myself to turn out the lights and climb the stairs. It was quite late, but I picked up a book to read before succombing to the night.

After I'd read for a while, I felt my agitation ease, and was encouraged by my spontaneous yawns. I knew I'd be able to sleep now, that whatever I'd been waiting for had passed.

I looked at the clock: 1:35 a.m. And that's when the date registered. Though my conscious mind had hidden the significance of the date (actively avoiding it, even), my subconscious committed to the vigil. I couldn't sleep until the hour of Sandy's death had passed. By the time I finished reading the short story and looked at the clock, we were 15 minutes past the moment that her heart stopped beating exactly eighteen months before.

I haven't looked back to see how I've done on the 18th of recent months, but I suspect those are the nights that my plans to get to bed at a decent hour go most awry. It's a strange thing, waiting for Sandy to die, metaphorically standing watch, when there is even less now for me to do about it than there was the night she actually died. I can't keep it from happening, can no longer hope to ease her passage, can't even prepare myself for the awful reality of widowhood. But I wait, all the same, until the moment has passed and I can rest.

And I did rest. I slept well and deeply, awake every couple of hours but quickly asleep again, and I woke contented with both cats snuggled in tightly against me, seeking body heat on a cold and foggy morning. I'm sad today, resigned, but not agitated. Today is just another day without her.

Laying claim

Gradually, my approach to the house, the garden, and possessions has been changing. After Sandy died, I remained very conscious of which things were hers, what her preferences were, and how to preserve her intent. Slowly, I've laid claim to more of it, pulling plants I don't care for or giving away things I'll never use. But recently, that process has accelerated.

This weekend, I wanted to take advantage of a book that was available free on the kindle. It would only be free for a couple of days, so I knew I needed to download it soon. But Sandy's kindle was still connected to her Amazon account, and I'd never felt ready to transfer it to mine. I didn't even know how. Motivated, I figured that out, and then asked Amazon to close her account. (First, I printed her wishlist to PDF, read the reviews she'd written, and checked to make sure there wasn't anything else I'd want access to.)

Oddly, I don't have any photos of Sandy with her kindle, but
here's a random exercise shot from 2004.

Now her kindle has been renamed Brie's Kindle, and it's attached to my account, and in addition to all the content that was already on it (and that I've dipped into), it has the free book I downloaded this weekend. That was a big step. Friends bought the kindle for Sandy shortly after her metastatic cancer diagnosis, and soon she carried it everywhere, primarily reading fan fiction on it. It was lightweight, perfect for reading in bed or lying on the sofa. She could carry it with one hand easily, so she was able to read as she walked, if she used just one walking stick. She'd had it for only a year when she died, but it was strongly identified with her in my mind.

A shift happened when I registered it in my name. I was pleased that the change didn't distress me, but I hadn't expected to be delighted. I felt that little thrill of excitement that comes with getting a new toy, wanting to explore it, poking around to find out what else I could get free. I claimed it. I moved in. I didn't delete any of Sandy's stuff, and I won't for a while, but it's clear to me now that my enjoying her kindle won't in any way diminish the experience she had with it. Instead it felt like a gift she'd given me.

Ultimately, I think I'm becoming more secure in the knowledge that changing the space around me won't erase Sandy. She certainly isn't fading from my memory or my presence, and it's no betrayal to her to make the most of every day I have left among the living.

Reclaiming energy

Shortly after Sandy was diagnosed with metastatic breast cancer in May 2010, I erased the whiteboard in the kitchen, wrote "How we win" at the top, and scribbled resources we had at our disposal. Against overwhelming odds, I wanted us to remember how fortunate we were, and how many things were actually working in our favor. I got us started, and then Sandy shouted out additions ("kitties!" she yelled from the living room, as a cat kneaded her arm). When I was through, we were pleased with the list.

We continued to add to the whiteboard as we discovered new tools. The last one we added was "forest." Studies in Japan found that "forest bathing" boosted the immune system. The study results were particularly inspiring because they found that the natural killer (NK) cells that target cancer significantly increased with exposure to the forest, and that they remained elevated for at least 30 days after exposure.

Sandy on a warm day in September 2010, soaking up the forest.

We went camping and started hiking frequently. Sandy was thrilled. I hadn't been opposed to camping or hiking in the past, but hadn't made it a priority among the many tasks that filled my schedule. But since my sole priority was prolonging her life, I was happy to make time for forest bathing. Sandy cheerfully said to a friend, "I can get Brie to do anything as long as I can find a study that says it fights cancer!"

The list on the whiteboard, written so optimistically in June 2010, mocked me as Sandy was dying. I couldn't erase it, couldn't admit we'd lost and that hope was gone. Even after she died, I left it in place. Then I started adding to it again, redefining what winning meant. I wrote "time travel, change the timeline, transcend this plane," and, eventually, "Quantum physics is our friend."

Sandy's been dead almost eighteen months, and I've wondered if I'd ever be able to erase that whiteboard and use it for other things. Every time I've asked the question of myself, the answer has been quick and certain: No. Not now. Maybe not ever.

Meanwhile, I have been moving on in other ways, reclaiming energy that I'd originally spent trying to will Sandy to return. One of the things I've focused on in the past few weeks is creating a healthier kitchen, especially replacing plastic wherever possible. This morning, I was washing a few dishes and thinking about the growing list of things I'm hoping to locate at thrift stores or on sale. I thought, "I should keep a list on the whiteboard." I pictured myself jotting items there, where my list would be very visible and easy to keep in mind. And I pictured myself erasing the "How we win" list.

I was surprised, but not traumatized by the change. It's reassuring to see that what once seemed impossible becomes relatively easy as time passes and I heal. The thing I want most in the world is to have Sandy back here with me, healthy and energetic and full of ambition. But it's not a betrayal of her or of our efforts to free up the energy that's been trapped by my need to hold on to unrealistic hope. I can keep wanting Sandy, keep interacting with her, keep loving her and still move forward with life.