The end of radiation

A year ago today, Sandy had her last radiation treatment. They gave me a certificate for her, celebrating the completion of treatment, but it wasn't a day of celebration for us.

Sandy had been more herself in the morning, with her sodium levels back up to normal or near-normal, and she'd been moved from a clear liquid diet to a liquid diet, so she could have smoothies and shakes, at least. At times she was completely lucid; other times she was confused. But in general it was a much better morning than the one the day before.

I was worried about her upcoming radiation session. She had an amazing nurse that day, and the two of us together decided, along with the doctor, that Sandy should have additional steroids before going down in an attempt to minimize the inflammation. We thought we had a handle on it, could get her through the last session with less pain. I have no idea what would have happened without those extra steroids, but she was in agony even before they started, and much moreso afterwards.

The radiation techs, who we'd found to be a caring and friendly bunch, were alarmed by Sandy's pain and called in the attending radiation oncologist. She was annoyed, really, and told them to get Sandy upstairs right away, as that's where they'd be better able to manage her pain. So they called ahead to let them know we were coming, and we headed up. Sandy's agony was extraordinary, so much so that the transportation tech used her key and pressed 911 to commandeer an elevator. They have that ability if someone is having a heart attack, for example. She said she might get fired for using it this way, but she couldn't let Sandy suffer a moment longer than she needed to. I was so grateful for her compassion.

While we'd been downstairs, the nursing staff had moved Sandy's belongings to the bed closer to the window, as her roommate had left. This way she'd have more space and quiet until they could find her a private room. The nurse gave Sandy a tiny dose of dilaudid, a drug we'd been avoiding; though it was effective overall, it exacerbated her head pain right after she took it. But with the tiny dose, that didn't seem to be such an issue. And Sandy was able to sleep.

She woke periodically, when the pain sharpened or when her catheter tube was kinked. Suddenly, she'd have an urgent need to use the bathroom, and she'd try to rise, though she hadn't been out of bed in a few days. I'd have to calm her and try to unkink the tube or get a nurse to do it if it was tricky. Mostly, though, the periodic low doses of pain medication enabled her to sleep through the pain.

A year ago, Sandy was trapped in the prison of her pain. Not
nearly as easy to get out of as a playground structure.

One time she woke up and reached for me, urgently saying that she loved me desperately, that she loved me to death. It was as if I might not know, or she might not have another chance to tell me. The storms that were happening in her head were terrifying to me; I can only imagine what it must have been like to be in the middle of them.

Our nurse was looking out for us, as concerned about Sandy as I was. And she was a good advocate. For example, she wouldn't let them place a patient who needed a bed alarm in the room adjoining ours, because she didn't want the "Mary Had a Little Lamb" tune to bother Sandy. As soon as a room opened up, we moved Sandy over. She slept through the whole thing, as she was wheeled down the hall, with all of our things carried along, and then positioned in the new room. The nurses who moved her were quiet, careful not to jostle her, and incredibly efficient.

My memories of that day are memories of pain and helplessness but also of intense compassion and thoughtfulness. I meant to send that nurse, in particular, a note of thanks, but I'm not even sure I can find her name anymore. I hope I expressed my gratitude sufficiently that day.

Sandy means the world to me, and she connected well with caregivers who had the chance to get to know her. But what impresses me more are the people who made sacrifices or went out of their way for the comfort and wellbeing of someone they didn't know at all. The tech who wheeled us up after radiation, who was willing to risk her job for Sandy's comfort, had never met Sandy and knew her only as a moaning, sometimes shrieking, lump under a blanket. The nurse who took such good care of us that day had interacted with Sandy a small amount, but not at a time that she was witty and generous. Yet she cared for us as if she had no other patients, no other priorities. I suspect she gave her other patients the same kind attention.

Radiation was done. Sandy lost so much during the treatment. But I don't blame the radiation itself for most of it. If the cancer hadn't spread without our knowing it, I believe the radiation oncologist would have been correct with his original prediction that everything would go smoothly. It was the cancer that stole from her, the cancer that killed her. A year later, I'm glad Sandy doesn't have to go through radiation anymore, isn't in the hospital, isn't in pain. But a part of me misses even that horrible day, because I could touch her, comfort her, and keep her company as she slept. I wouldn't want her to suffer, of course, but I ache to be with her again.

Now I understand why she's so present

I've made an effort to stay grounded today and avoid getting too bogged down in the memories of the long, confusing, and tedious day we spent in the ER last year. Part of that effort was a leisurely visit to a wonderful independent bookstore just a few blocks away.

I don't go to the bookstore often enough. Today's excuse was to buy a belated birthday present, but really I just wanted to get lost in the sense of possibility and the intellectual stimulation that a good bookstore offers. Elliott Bay Books is a landmark in Seattle, around since 1973, and in my neighborhood since it moved up here from Pioneer Square in 2010. Many of us in the neighborhood think the store did us a personal favor, and they've thrived in our pedestrian-rich community. They kept their sense of history, and their new space has the same warm-yet-airy, comfy, settled feeling that the old one did. It's a dangerous place for the wallet, but an exciting place for the mind.

I found the book I'll give away and went searching for treasures for myself. I bought some puzzle books (O'ekaki and kenken), and then turned my attention to the bargain books. I'm drawn to the bargain books because I come from several generations of people who are pained by buying things at full price. Besides, these are all the books that were on the "new" tables just a few years ago; they're still good books. But mainly I like the bargain books because so many categories occupy a small space; it's a ripe area for cross-pollination, especially when I'm not sure what I'm in the mood for. I lingered over a small but thorough history of Seattle's early days, which includes some intriguing photos, and then added it to my stack. I read an entire book of poetry, a testament of grief at the loss of a spouse, standing there with my eyes wet with tears, and then decided that if the book had held me that way in a bookstore, it should go home with me.

Poetry was right next to self-help, and I saw a book titled Spirited, with a subtitle about finding guides. Given my current state, I can't resist flipping through such a book, even though I still have little respect for much of the genre. This one was written by a woman who makes her living as a medium, and it appears that the book is designed to help people connect with loved ones they've lost. I didn't spent that much time with it, figuring I'd put it on hold at the library and see if it has anything for me. Despite all that I've experienced with Sandy in the past year — and in some respects, because of all I've experienced — I remain skeptical of those who claim to have special access to the other side. So I thought I'd read a little bit about contacting the dead and see if it resonated. (I also skimmed the front of the book where she won my respect by addressing the likelihood that I'd be skeptical.)

She talked a bit about how energy works, and how incredibly hard it is for spirits to contact us and to hold contact for long. She said that our energy is slow, dragged down by our physical forms, and the spirits we're trying to contact have fast energy, as they're free of encumbrance. According to her, we have to speed up our energy and they have to slow theirs down if we're to bridge the gap. That makes some sense to me, given that I've learned there's a particular state of sleep I need to be in to have a visitation dream, for example.

But the next part is the part that made me cackle. She said that contact depends in large part on who you're hoping to hear from. She said that our personalities don't change when we die, and that those who were boisterous and talkative, craving the center of attention, are the ones who are easiest to contact. If someone was quiet, reserved, unassuming in life, it can be quite difficult to reach them later.

As I finished writing this, I said, "Okay, honey, what picture
exemplifies your being boisterous?" and as I asked that, this
is the photo that appeared on the screensaver. She's right!
It's blurry, but that's because she and our niece were being
boisterous, after all. Hurrah for exuberance!

I've marveled at how much contact I've had with Sandy this year — and that she's had with others, as well. I've assumed that my own connection is the result of some fortunate combination of me being a bit of an empath in general and of her never being subtle. But as I've described my experiences to people, I sometimes feel bad, guilty that I've had such a strong connection to her when others long for one with the people they've lost. It makes sense, though, that Sandy would remain a stronge presence in the world. And even though I was sometimes embarrassed by the things she'd say in public (!), I'm now so grateful that she was such an over-the-top extrovert Leo who loved nothing more than to hold court, sharing her thoughts and knowledge with a captivated crowd (a captive audience would do nicely, too).

This new bit of information even resonates for me when it comes to cats. For several months after Prudence died, she appeared in my dreams, but other cats haven't come to me after their deaths. Prudence (Pissy) followed me around incessantly, and she was so social that when she heard someone approaching the front door, she'd leap through her cat door to run around and greet them on the porch. Though she hated to have her tummy rubbed, she expected it to be admired, and she'd run in front of people repeatedly as they passed our house, lying down and wriggling on the sidewalk to show off her belly, and then jumping up when they passed her to get ahead of them and do it again. It makes sense that she'd still be looking for attention and admiration after her sudden death.

A few days before she died, Sandy looked at me sadly and said, "We're going to miss each other so much." I agreed, but secretly I thought then that I'd be the one missing her; I didn't think she'd get to miss me, or have any feelings at all. I thought she'd be truly gone, her energy dissolved and recombining with other life. I was so wonderfully wrong. She misses me; she worries about friends and family; she still has strong opinions. She's Sandy, whole and real, and apparently enjoying her newfound omniscience. And to think I might not know any of that if she'd been the quiet type!

Reliving last year and living now

A year ago tonight marked the end of a lot of things. It was the last night Sandy went to bed in our bedroom, the last time she went down to the TV room in the basement, the last time she climbed the stairs to the second floor.

We'd come home from the hospital the evening before. We shouldn't have, but Sandy was determined to go home. The oncologist had given the okay on Saturday for her to go home Monday, assuming all was fine after radiation that day. All was not fine after radiation. She was in severe pain and spent several hours completely out of it on narcotics. The nursing staff assumed we'd be staying the night; I told them repeatedly that I didn't know yet; whenever Sandy woke, she was clear that she was going home.

We waited, ready to go, for a long time before a trained nurse could deaccess Sandy's port. Meanwhile, her pain worsened from sitting so long, and her mother and I kept replacing the cold cloths on her forehead. Getting her home was a challenge, and then I left her with her mother and sister while I went to the after-hours pharmacy to get her medications; she was due to receive one of them before bed that evening. Everything was chaotic.

Sandy had been desperate to go home. I think that had more to do with wanting to return to her old life, her old self, her independence and mobility than the desire to be surrounded by our stuff and the cats. Home had changed in the ten days she'd been in the hospital. Now home required a walker and my constant attention. Home wasn't easy. Home wasn't quite home. But she was thrilled to be back anyway, and that first night, we both actually slept well.

She woke in a good mood in the morning, and things looked promising. She could read without a headache for the first time in several days, and she hollered down comments about the New Yorker articles she was reading. I made her biscuits, which always felt like a treat to her, and when her mother arrived, she fried an egg to go with them. Sandy was ambitious, and she was enthusiastic about having a massage. While she still had energy, she phoned and made an appointment for later that day.

I had to go pick up another medication, one that had been special-ordered, and when I came back, she'd lost a little of her energy, but was still doing basically okay. And then the constipation got bad. I did what I could to help her, as she was frustrated and panicky, and she dropped off to sleep. But within half an hour or so, I had to wake her to go to radiation. There were two more sessions to go. Had we known she'd die three weeks later, we'd have stopped, but at that point, Sandy was just determined to get through them. Her mother helped us get to the appointment and then went to lunch with her brother and his wife. Sandy was fine during radiation itself, and we met with the radiation oncologist and nurse afterwards; as we sat there, her head began to pound and she nearly screamed. She lay down on the exam table; we turned out the lights for her; we gave her cool cloths. I hadn't brought any medication, because I hadn't expected to be there that long. I emphasized to the doctor that this is what she's experienced after every radiation treatment, but he could offer no explanation.

When we got home, she lay on the sofa and I brought her a little food and her pills. She almost immediately vomited, and from that point, she didn't keep anything down again while we were at home. She debated canceling her massage, but was so certain that it would bring her relief that she decided to go. Carefully, painfully, we got her to the car, and after I'd parked the car, she hobbled the block and a half to the massage center using her walker, with me supporting her. I remember thinking that I didn't recognize her or our life, that the vibrant, energetic, sparkling woman I'd known even a couple of weeks before, even while she had unexplained pain and nausea, had suddenly become a miserable old woman. I was acutely aware of my own health and agility; I felt guilty, even, that walking was so easy for me, but mainly I just wished I could give her some of my health. I just wanted to take her pain away and have her be fully herself again.

The massage didn't go well. When I returned to pick her up, I learned that she'd vomited during the middle of the massage, but they'd gotten everything cleaned up. As I helped her dress, I asked her how it had gone, had the nausea been a problem? She said no, she didn't care for the masseur (it wasn't her usual person, the one she thought she was making an appointment with), but that she hadn't been nauseated or anything during it. I didn't tell her what I'd been told; I was grateful that she didn't have to feel any shame or embarrassment about it.

Things steadily got worse as the day progressed, and by the time we went to bed, she was starting to slip out of consciousness. For hours, I struggled to get her medication into her at the right times, afraid she'd choke because she couldn't swallow, but needing to act quickly when she was awake. In hindsight, I should have called for EMTs much earlier, but our normal was shifting faster than I could keep up with it, and I was in way over my head. We didn't know then about the sodium drops; I thought she'd be fine in the morning as she had been the day before, if I could just keep up with her medication.

I called 911 at about 6 a.m. when she woke long enough to vomit and then was completely unresponsive. They did some quick tests to see if it was something simple they could address, and then they carried her down to the ambulance. The last time she left our bedroom, she was wrapped in a blanket her sister had made her, carried carefully down our not-to-code steep stairs by four or five EMTs. I took care of the cats, grabbed a few things, and followed them to the hospital in our car. That was the only one of the four ambulance rides she had in the last five weeks of her life that I didn't ride in the ambulance with her; twice I rode in the back with her. This time, I parked the car, called her mother from the parking lot, and went to the emergency room to begin another stressful day after little or no sleep.

I'd not had much food or sleep or, really, any exercise to speak of in two weeks already at that point. I'd probably lost some weight; I certainly didn't have any energy. Yesterday, I was acutely aware of the difference in my life this year. In fact, yesterday was nearly an ideal day. The weather was gorgeous, with a high in the mid-70's, a mild sunshine, a light breeze. I worked for a couple of hours in the morning, and then got some good gardening done before lunch. I ate, and I read a bit online. And then I got ready for a long ride. A few minutes after 3:00, I left the house to bike around Lake Washington, a 50-mile trip, including the steep way up Juanita, a climb I'd never attempted before.

The ride was a challenge to myself in several ways: I don't usually ride alone for pleasure (as opposed to transportation), so I was proud that I'd not bailed on the plan. I managed the climb up Juanita without noticeable strain. I enjoyed myself, paying attention to my surroundings and living in the moment. At the same time, I savored the memories that go along with all the landmarks along the way, as I've ridden much of that route with Sandy and with other friends many times. I didn't really start getting tired until I was about 6 or 7 miles from home, and then I allowed myself to go as slowly as my fatigued legs wanted to go. I got home before dark, ordered pizza, indulged in a long hot shower, and watched a DVD with the kitties. Periodically, I'd remember the day we left the hospital the first time last year, and I'd feel grateful that the present is not so stressful, that no one is depending on my hypervigilance right now.

I'd like the hiking, camping, gardening, biking, vidding,
laughing, reading, baking, and wanting-to-be-the-center-
of-attention Sandy back, please, with good health!

It's unbelievable to me that she hasn't been in our bedroom in a year. Well, it's unbelievable because it certainly feels like she has. Through visitation dreams and the strong sense I often have of her presence, I feel her there much of the time. And even before she died, she'd come back to the bedroom without her body at least once, before I realized that she really could do that, that she likely really did have an out-of-body experience while we were at Bailey Boushay in which she'd just been home, in our bedroom, with the cats curled up around each other on the bed.

I want her back desperately, but I'm grateful that now, though she has no body, she can be fully herself in a way that she couldn't a year ago tonight. I only wish she could be fully herself and return to me in a healthy body.

Confusion

Last night, I was thinking about where we were a year ago, that Saturday evening that Sandy set off on a mission to figure out where you could see the Space Needle from Virginia Mason Hospital. She'd had brain radiation that morning, but had recovered enough by the late afternoon to practice walking up and down the stairs a few times with me, anticipating her return home soon. And she was motivated that evening to find a view.

Sandy and Laura played tourist at the Space Needle several
years ago. The background image really doesn't do justice
to the height of the Needle. It's quite a bit taller than Sandy!

We'd just gotten confirmation that the Pride flag would fly from the Space Needle on Sunday, and Sandy wanted to see it. So, shortly before dusk, as I recall, she insisted on a field trip up to higher floors to see if it would be visible. I remember being in the elevator, her excitement at leaving the floor for a reason other than radiation or tests. I remember relaxing in a large waiting area on a different floor, Sandy putting her legs up, complaining for the first time that they ached.

She took us to a few different floors before she was willing to give up and admit that the hospital was at the wrong angle to see the Space Needle from public areas. In fact, before she gave up, she trotted us down a hallway of patient rooms and as I protested, even wandered into an empty room to see whether that window gave us the view she wanted.

I remember so much of that outing (though I think I may be merging a couple of treks), but I don't remember who was with us. I believe a friend had come to visit and got roped into the adventure. I can feel their presence, almost see their face. But I can't figure out who it was.

I was stuck on that last night, as I biked home from a lovely evening with friends. And in my sleepy, overly full state, I looked forward to asking Sandy who had joined us that evening. My focus had been narrowly on Sandy, but she was more likely to remember who else had been there.

And then I fumbled, mentally, when I realized I couldn't just ask Sandy what she remembered about that night, or, rather, I couldn't expect much in the way of a useful reply. The void opened up again, the disbelief, the confusion. It is, ultimately, confusing to me that I can't just come home and discuss the day's events with Sandy, talk over embarrassing or aggravating moments, share our interpretations of political issues, and just be together at the end of the day. Eleven-plus months later, at some subconscious level, I still expect her to be here, grinning at me, when I get home. Or yelling about something some politician did. Or stressing over some task undone or something scheduled for the next day. If I'm on my way home, by definition, I'm headed to Sandy. And it still just baffles me that she isn't physically here.

Pride weekend

The grief literature warns that holidays — especially in the first year — are rough. And they're right. I don't think I quite understood until this week just how much Pride is a holiday for me and for much of the queer community. And if Pride month is our holiday season, then the Pride parade is our Christmas morning.

I'd agreed to march with the referendum campaign in the parade, and to work a shift at the festival afterwards. Even as I signed up to volunteer, I hesitated. But I've skipped Pride many times, and my experience of the event has changed as I've matured, so I thought I'd be okay. I was wrong.

Even before I left the house yesterday morning, I'd suddenly broken into sobs multiple times. Sometimes I'd flash on the 24th last year, the day New York passed a marriage equality bill and we celebrated in Sandy's hospital room. Other times, I'd flash on marching in the parade with Sandy, or working the crowds of people in the staging area before the parade began. It was at a Pride parade many years ago, as I was weary and ready to go home, that Sandy said she hoped that I'd always be home when I was with her.

Given my obvious fragility, I considered skipping it. But I'd made a commitment, so I left the house at 10 a.m. and walked downtown. I cried a few times as I walked the mile or so, but then the carnival energy of the parade line-up cheered me a bit, and I remembered that this was actually my favorite part of the whole thing: excited people finding their groups and making last-minute preparations, entertaining each other as they waited. It's always a festive, utterly chaotic scene, and yesterday was no different. Even as I wandered toward the campaign group, I noticed that other groups included "Approve R74" on their T-shirts and floats. That level of focus pleases me.

Sandy in 1993, in D.C. for the March on
Washington. I was there, too, but not with
her at the time, and we didn't see each
other there, though we compared notes
years later. We had been impressed by the
same things (especially the mood in the
subway stations when the cars and platforms
were filled with jubilant marchers).

I convinced myself to go, in part, because I believed I'd run into old friends, likely to be marching with the campaign. I searched each face among hundreds and recognized none. Already in a pitiful state (literally, a self-pitiful state), I felt adrift, unknown, like I didn't belong. Loud music was blaring from the truck that accompanied us, so I couldn't engage in my usual chitchat to get to know strangers.

It's not quite as pathetic as I'm making it sound. I did see some friends, but they were grand marshals and popular politicians, all occupied and pressed upon by many who needed to say hello. I needed to have a friend in the crowd I could hang out with.

I managed to keep my tears to a minimum during the parade itself, and was hugely relieved when we reached the end of the route. Adding to my emotional discomfort, I'd been desperate to pee for much of the hour-long parade.

I felt much better canvassing once we got to Seattle Center. I like having a job to do. I'm the kind of person who rarely attends a conference or event if I'm not responsible for coordinating it or presenting at it. Collecting pledges from people to approve the referendum in November meant I could talk with people one-on-one, educating some about the referendum, commiserating with others about other political issues, and celebrating with everyone that the sun had come out on a day we'd expected rain.

When my last pledge card was completed, I returned to the booth and was told they had plenty of volunteers, so I could take off. The coordinator asked if I'd signed in earlier, and I said no, so she handed me the clipboard of expected volunteers. My name wasn't on it! I could have stayed home and no one would have known the difference. I'm just as glad I didn't know that, because I at least had a few moments of connection. And because I got through my first Pride without Sandy, so next year should be a little easier.

I'd canvassed for about an hour and a half, and I was surprised to see that the parade was still going on as I left Seattle Center. Instead of walking directly up Denny towards home, I ended up walking back the entire parade route, watching the parade as I went. I saw people I knew in various contingents, which explains why they weren't with the campaign or along the side of the street as I marched earlier. I cheered for Catholics for Marriage Equality and Mormons for Marriage Equality, for Lambert House and the Seattle Public Library, for the Filipino Youth Activities Drill Team, our Democratic gubernatorial candidate, Planned Parenthood, and other groups. And I got back to the starting point, where I'd begun at 11 a.m. with the campaign, just as the last group walked through that intersection at 2:20. Three hours and twenty minutes they'd waited to start the parade. Whew.

I walked up the hill home, had lunch at 3:00, and then lay down, exhausted and emotionally defeated. Every part of my body ached, especially my brain and my heart.

I know now that I should have arranged to march in the parade with someone. And that I probably should have taken a bus home. (All told, I walked about six miles I think, and was on my feet for five hours, much of it walking slowly.) Dozing off and on for a couple of hours helped, as did some dinner and getting to bed on time. This morning, I felt much better, due in large part to getting some rest, but also because I spent time with Sandy overnight. She made a well-timed visit, and today I'm ready to resume my forward momentum.

Living as if every day were July 3

In many ways, I'm doing quite well. I recognize a feeling of forward momentum; I'm interested in many things, making ambitious plans, and excited about connecting with people. I have much of my energy back and feel like myself, like I did six years ago, before medical concerns steered us away from our normal lives.

At the same time, I am frequently suddenly overwhelmed by feelings of despair and anxiety. I don't have much warning for the storms, which wash through me and leave me exhausted. This, too, is familiar, but it's stronger and more unpredictable than I've felt in many months.

In the midst of all these anniversaries, Seattle is celebrating
Pride this weekend, and Pride brings its own set of memories.
In 2007, my friend Wendy visited us from Missouri for Pride
weekend, and we spent an afternoon on Alki. We rented one
of those goofy four-person pedal cars (I've no idea what
they're actually called) and had much fun together.

And the two are happening at the same time: I have great hope and ambition, positive feelings toward the future one moment, and then the next, I'm bereft and restless, certain that anything I do is futile. It's challenging for me to keep up with these changes, let alone ask the people around me to roll with them.

I suspect these waves will continue through late July, beyond the anniversary of Sandy's death. So I'm adjusting my expectations and my schedule. I have experience with that, as well.

On July 3, 1980, my father attempted to lure me into his van to take me away for a week when I'd expressly said I wanted to stay home. I could see what he was doing, and I slipped back into the house when he was distracted by an argument with my mother, but before I left, I'd heard my stepmother call out from the van in the driveway, "Grab her, Fred. You're bigger than she is." I hid; they left without me. I might have thought I'd made too much of the incident had my sister, who was in the van, not overheard my father and stepmother talking as they drove away. He explained to my stepmother that he'd discussed it with his attorney, who had advised him not to grab me; I needed to get into the van willingly.

I'm still appalled that he would discuss kidnapping his daughter with his attorney, as if it were a reasonable option. And I still have no idea why they wanted me with them; it wasn't as if they particularly liked me. But I was deeply traumatized that day, moreso than I recognized. A year later, I woke my sister when I was screaming with nightmares. For years afterwards, I behaved strangely on July 3, abruptly leaving gatherings with friends or falling into funks of despair. It was only in 1990 that I appreciated the anniversary, and looking back through old journals and diaries, I recognized the pattern. From that point on, I made sure I had flexibility on July 3 to do whatever I needed to do to take care of myself, and I prepared those around me for potentially erratic behavior. Each year, the hold the body memories had on me loosened, and in recent years, I've barely noticed the date.

But now, during this stretch of time, I need to give myself the same flexibility, the same permission to bolt or scream or break down, the same ability to be alone, that I've granted myself on many July 3rds. Since I realized that a few days ago, I've felt less adrift. The storms can come through me; I can relive anything I need to relive and remember hard things, integrating the experiences in a way I didn't have time to while I was living them. And I can warn the people around me that I'm erratic, unpredictable, but also going to be okay.

These body memories are powerful, but because I know that the events of July 3, 1980, eventually became simply memories, I can also move through this period confident that each year this stretch of time will be a little easier, until the pain and despair of 2011 are also simply memories. And because my sense of Sandy continues to grow stronger, separate from the pain, I believe I can lose the anguish without losing her.

Delivering more than packages

I don't know what it is about UPS delivery people, but they seem to be a nice bunch.

On the Friday after Sandy's death, I was a few blocks from home on the way to her yoga class to let them know what happened when I saw my regular UPS delivery person. He greeted me with a smile and asked how I was. I said, "Not great," and started crying as I told him that Sandy died. He put down his package, gave me a hug, and said, "I really liked her." I said, "Yeah, I did, too."

Today, it took me a minute to get to the door after the doorbell rang. Some supplements I ordered were sitting on the porch for me, and the delivery guy was almost back to his truck. He heard me open the door and came back to ask how I am. I said something light about trying to keep the cat inside. He looked at me with concern in his eyes and a smile on his face, and said, "I'm checking up on you."

Most of the things Sandy bought online ended up in the TV
room, where she had plenty of help from kittens.

It's not just this guy either; we've always had great luck with UPS workers. Several years ago, Sandy was doing a lot of online shopping, mainly ordering DVDs and electronics. She worked at Microsoft then, so I was the one answering the door and I got to know the UPS delivery person well enough that we'd spend ten minutes discussing different aspects of the garden and whether the same plants would work in his, local politics, or even ideas for dinner menus. I never knew his name (and for the first year or so, he assumed I was Sandy, as everything was addressed to her), but I knew a lot about his life.

Around the time I bought the house in 1995, I ordered several things, including a small tree, by mail. The delivery person for this address was the same guy I knew from the bookstore, a few blocks away. Since he knew I volunteered there, if I wasn't home when he rang the doorbell, he was kind enough to take it upon himself to deliver things to the bookstore for me so I could fetch them later. I knew when he married, when he had his first child, and other landmark events in his life. I realized a few days ago that his first child must be graduating high school soon if she hasn't already. Though he hasn't had our house on his route for years, I still see him frequently as he drives through the neighborhood, and he always waves and sometimes we chat briefly.

Our USPS mail carrier has been thoughtful and inquired about me several times, but never with the same level of concern and connection. The Fed Ex folks never stick around beyond hello and don't seem to have a regular route; it's a different person every time. But I feel a genuine connection with the UPS delivery people I've known in Seattle. I wonder if that's true everywhere. If it is, it's good for the customers, employees, company, and the community. That's a nice package deal, right there.

Keeping secrets

On June 20, 2011, a Monday morning, I woke up in the hospital bed next to Sandy. I knew — as did the rest of her family and her close friends — that the MRI results on Saturday had been devastating. I knew that the cause of the previously unexplained nausea and pain were now apparent. But Sandy didn't know any of this.

She'd regained lucidity on Sunday, for the most part. She recognized people, and she understood that she was in the hospital. But she wasn't fully present. After Mindy and I met with an oncologist that morning to discuss treatment options (and to affirm that Sandy would not have intrathecal chemo, requiring a hole drilled through her skull, if she was not lucid enough to make that decision herself), I'd gone home to try to get some rest. I'd puttered in the garden, made some phone calls, snuggled the cats, and tried to sleep. But thoughts of losing Sandy haunted me and filled my veins with anxiety. Despite my exhaustion, I couldn't fall asleep through hours of soothing music and guided imagery. Eventually, I dropped off just long enough to have nightmares, and I woke in a panic. At 1:30 a.m., I wrote in my journal, showered, and then headed back to the hospital, arriving just about 3:00.

There was a nurse on duty in Sandy's room because she was at risk for falling. I whispered to that nurse as I entered, asking how Sandy was doing. From the other side of the room, Sandy asked her sister, Mindy, "why is Brie talking?" Mindy told her I was checking in with the nurse because I'd been gone for a while, and Sandy insisted that I hadn't been. After the images that had flooded my head over the past several hours while I was away from her, I was delighted to hear her voice, even if she was grumpy and confused. I walked over to kiss her and she asked if I wanted to crawl into bed with her. I did, and I slept well, despite the need to avoid tubes and wires and to wake when techs came in to take vital signs. Feeling her body next to mine, muttering back and forth with her occasionally — I could live in the present and take comfort from her existence.

But I felt awful keeping the truth from her. She'd been barely conscious when we learned the news, and I didn't want her to hear it before she could comprehend it and cope with it. So I'd asked everyone to speak of the cancer's spread and possible treatment only when they were away from Sandy. I was nervous about how to tell her, and when. But that Monday morning, she opened the door for me.

At Arches in May, we went into a public bathroom together,
and I was carrying the camera. I started snapping photos of
her, completely forgetting we were in a bathroom. But she
didn't mind my indiscretion then, and won't mind it now.

I accompanied her to the bathroom. That was where we had many of our private conversations during that initial hospital stay; that was where we became the two of us again, figuring things out together and supporting each other. That morning, she complained that her head hurt. I told her that radiation should help with that. She asked me why it would help, puzzled because the last she knew the doctors hadn't associated her headaches with the two small lesions in her brain. I told her the MRI on Saturday had shown that cancer had spread in her brain, and that the doctors had told me that radiation was the best way to alleviate her symptoms. She shook her head and said, "I had an MRI?" and then she embraced the information and the hope that the radiation would help. We didn't know yet whether radiation would start that day at the hospital, though Mindy and I had been advocating for it to start immediately. Sandy agreed that it was important to get started right away.

I hadn't told her about the cancer in her meninges and the rest of her spinal column yet, or about the treatment options I was pretty sure she'd decline. But she knew part of it, and absorbed the information without apparent trauma. I was much relieved.

A little later, we were down on the radiation oncology floor where she was getting fitted for a new radiation mask. A radiation oncologist stopped by to talk about treatment. She mentioned the cancer in Sandy's spinal fluid, but in the context of her belief that we didn't need to radiate Sandy's neck, because the brain radiation would affect the spinal fluid as it traveled through the brain. I'd tensed as the doctor began talking, afraid Sandy would feel betrayed that she hadn't had this information, but the doctor made it sound matter of fact and couched it in hope for the radiation's effect. Again, Sandy took in the information without apparent trauma. And I was unburdened. In fact, I was exuberant, excited by the prospect that the radiation might treat the other cancer as well, or at least get a head start on it

Later that day, I was able to talk to Sandy about my decision not to tell her the news until she was able to take it in, and she respected and appreciated that decision. Though I'd felt I was lying to her — something I never would have done in other circumstances — she didn't see it that way. I told her then that Mindy and I had talked with a doctor about treatment options, that I doubted she'd be willing to do them, and that I could tell her about them whenever she wanted to know but it might make sense to wait until she'd had more radiation. She asked not to hear about it just yet. After that conversation, she knew everything I did, and everyone was free to talk openly.

I'd seen TV shows and movies, read books, heard stories about people keeping information from a patient, and I'd always felt pretty strongly that that was wrong. I knew that if I were a patient, I'd want to know everything about my condition and about other things in life. So I was surprised at how strongly I felt that this information should be kept from Sandy until I had a chance to share it with her when I knew she could understand it. I do think it was the right thing to do, and Sandy thought so, too. But it was one of the harder aspects of the entire ordeal, especially because I often found my strength from discussing things with Sandy. In fact, I still do.

Kudos on the front garden

It's hard to see — must have been taken around dusk — but
here we are digging out the grass from the SE corner of the
front yard, as Sandy first expanded her territory.

I spent time weeding out front this afternoon. Mainly, I was hoping to remove the intruders that are competing with the Japanese Maple for nutrients, with the hope that it will finish leafing out. From underneath the tree's canopy, I could look out on passersby and chat with them, sometimes accidentally startling them. Through the years, various cats have found the tree to be an optimal hiding place for viewing the world while remaining unseen, but with the sparse foliage on the tree this year, I was pretty visible.

As always, when I'm in the front garden, people stopped to compliment it. Not just casual appreciation, either. It's common for folks to gush about this being their favorite garden in the neighborhood, the place they bring out-of-town guests to show it off, the home of flowers they look forward to every year.

Peek-a-boo. One of the cats peered out from behind the limbs
as the tree was leafing out in 2007. Surely no dog could
see him there! But his brothers found him easily.

I thank the ones who make the compliment in passing, but with those who want to engage, I'm happy to chat, too. I tell them that I, also, love the garden, and that I can't take the credit for it. I tell them that Sandy created it, that it's always been her gift to the neighborhood, and that now that Sandy's died, I'm hoping to keep it up. It occurred to me as I came inside tonight that I should start asking people who love our garden to contribute to the National Breast Cancer Coalition or to sign the petition to the President or to write to their Congressional representatives in support of the Accelerating the End of Breast Cancer Act: "If you love gardens like this, help keep their gardeners alive." Maybe I will.

One woman stopped to talk for a few minutes, emphasizing just how much she appreciates our yard in every season, every time she walks by. She pointed to the campanula, which self-seeds with abandon and is beautifully scattered throughout the yard. She'd tried to find some at the local garden store but they didn't have any, so I invited her to pull some of ours and try to transplant them. We talked more, and I learned her name, and that she lives only a block away. I gave her several plants, and reminded her that she can come back for more if they don't transplant well with their puny little roots.

I've been spending a lot of time in the back yard lately, working in cover crops and preparing vegetable beds for planting, giving the bamboo some long-overdue love, chopping up compost. It's a peaceful place, very grounding, and I enjoy working back there. I forget just how different it is to work in the front yard. We live in an area with a high walkscore, and frequent foot traffic. I don't know that I've ever been in the front yard for more than ten minutes without someone walking by, and the usual spacing is two to three minutes. On a sunny afternoon like this one, folks are chatty and in a good mood. Whereas gardening in the back yard is peaceful, meditative, and solitary, gardening in the front yard is a social affair.

Sandy worked in the back yard with me, too, but the front garden was hers. And it fits. Not only were there constant distractions, with people and dogs (!) walking by, but there were a constant stream of compliments and questions. She could accept praise and teach people about various flowers and weeds. As a Leo, of course she felt energized by the space.

I'll do my best to keep the front yard beautiful. But it won't just be the flowers that stand in Sandy's honor. As I work in the garden, I like the idea that I'll be her emissary, accepting compliments on her behalf and doing my own part to educate those who linger and ask questions.

Grateful for support

A year ago today, Sandy was not lucid; she was barely conscious much of the time. She didn't even know when they took her down for an MRI, and she was asleep or otherwise out of it when the doctor came in and, pretty casually, told us he'd looked at the MRI and it "looked pretty bad."

"This is no benign headache," he told us. And then he described little dots of cancer throughout Sandy's brain, and the obvious involvement of the meninges, meaning the cancer had invaded her spinal column as well.

Since we'd arrived at the hospital, the doctors and nurses on the oncology ward had acted as if Sandy's prognosis had always been dismal, as if we should be expecting death to be imminent. But I had more information than they did; I knew that the scans from just six weeks before had been good, and that her oncologist had considered everything to be on track just four days before she was admitted to the hospital. I knew that the reason I assumed her head storms were caused by migraines were because I'd been told that the day before by multiple doctors (her radiation oncologist and a neurologist), and that the CT scan on the 16th had shown only the same two lesions we knew about in her brain.

I had the information, and yet they were right and I was wrong. Sandy had been independent until the day before she arrived on the ward. I'd watched her go from confused and not-lucid to fine on Thursday, so I kept expecting her to recover. But when they first saw here there at the hospital? She looked pretty bad indeed. 

So the doctor comes in and drops a bombshell without apparently understanding just what a bombshell it would be. I understood at that moment that we had lost. I saw that she would die, and that I couldn't save her, and that I would be left horribly alone.

They're a supportive bunch — and a little wacky.

Had Sandy been awake and lucid, we'd have comforted each other. But she wasn't even aware there was a doctor in the room. I was fortunate, then, that her mother and sisters were there with me. Over and over again throughout those four and a half weeks, Sandy's family was there for her, but especially for me. I am so grateful for that, and so grateful that at the moment that doctor breezed in with his devastating news, I was not alone.

Sandy became lucid later that day, and the next day, we were able to share the plan to continue radiation at the hospital with her and catch her up on how she'd gotten there. By Monday, I could tell her about the MRI and its results, and she was present enough to absorb the news (and marvel that she'd had an MRI she knew nothing about). She was back, and as she came back, she appreciated having so many people who loved her in the room with her at various times.

In fact, she said several times that if you have to be sick, "it's good to be sick in the summer," as schedules were more flexible so friends and family could visit from out of town more easily, and folks in town could spend more time with her, too.

None of it played out the way we thought it would, and I still ache for what we lost. But through the pain, I can see the blessings, too: the timing, when I was already planning not to work for months; Bailey Boushay House with its supportive and generous staff and encouraging environment; and mostly, the people — the friends and family who swarmed around us, propping me up and helping Sandy know just how much she was (and is) loved.

Laundry day

It was just about this time a year ago today that I drove Sandy to urgent care, and we began a harrowing afternoon there before she was admitted to the hospital that night. I didn't know then what was causing her confusion, what made her think it appropriate to get out a plate and fork to eat cereal or what led her to use the wrong words for things, to frequently shake her head like she was trying to put her brain back in place. I believed it was something temporary, another complicated migraine, like the one they'd (incorrectly) diagnosed the day before. I believed the CT scan from the previous day, which reassured us that she hadn't had a stroke and that the small lesions in her brain, while slightly larger, were the only cancer evident. I was troubled, deeply concerned about what was haunting her, but I did not think this was the final chapter.

June 17, 2012, is a very different day. The air is fresh outside, still more humid than we normally have in Seattle, but not the stifling weight we suffered through yesterday. It's wonderfully windy. I've opened windows all over the house, and the wind rushes through, cleansing the space of those awful memories.

Laundry was Sandy's chore, but I've slowly slipped it back into my routine after thirteen-plus years of absence. I find it satisfying now. Unlike most things in our lives, this is true multitasking: the machines do the bulk of the work while I do other things. And over the course of the day, the chaotic tower of dirty clothes piled in the corner of the bedroom is transformed into clean, fluffy laundry, stowed in drawers, hung on closets and hooks. I do laundry every four weeks now; I survey every room, gathering stray dishtowels, discarded socks, fleecy sweatshirts I've placed in strategic locations for the cats to nest in. I strip the bed, pull tissues from pockets, sort out the loads. It's systematic, tangible, even sensual. And it's symbolic for me. I'm taking care of myself, and getting a fresh start. Today, especially, that feels good.

This was taken sometime in the last year of Sandy's life, at Vifians'
house. Sandy went there regularly for dinner on Friday evenings,
one of the lovely routines that made up ordinary, non-crisis life.

My goals for the day are simple, nesty, necessary goals: laundry, cleaning the kitchen, returning some things to the library, gardening, reading. Nothing remarkable there, but that's exactly what's healing about the day. It's just a day. No one in this house is confused or in pain; June 17 will not, apparently, be a horrendous day forevermore. It's just another day of healing and of feeling gratitude for all the days we had together that bore no crisis, that were lovely, ordinary days.

Happy birthday, Grandpa

Though most of the dates this month bring up memories of last year, June 16 has always held positive connotations for me. 110 years ago today, my grandfather, Cloyce Emerald Sides, was born.

Sandy didn't have a chance to know her grandparents like
I knew mine, but here she is with her great-grandmother,
called Grammy by everyone in the family .

He died nearly twenty years ago, at the age of 91, but Alzheimer's had stolen much from him over the previous decade, so most of my memories of him are from my childhood. I have always felt a strong connection to him, as a fellow red-headed Gemini (he was long past red hair when I first knew him, however). Like me, he was a crossword puzzle devotee, and he carried a little notebook in his shirt pocket to jot down thoughts as he had them. He died before Sandy and I got together, but she enjoyed hearing my stories. I wish I'd had the chance to introduce them.

Grandpa was very intelligent, but he graduated high school too young to go to college at the time, and the only work he could find was pumping gas. (As he told it, he first met my grandmother, 11 years his junior, when she was a snot-nosed second-grader sitting in the back seat of a car whose tank he was filling; they didn't start dating until many years later, obviously.) I was always told that no one was allowed to skip grades in our family because of Grandpa's frustrating experience.

After his death, we discovered that he didn't just graduate high school early; he graduated high school multiple times in different communities as his family moved around. Apparently, every time they moved, he just started school as a senior again and graduated with that class. So I don't know how old he was the first time he graduated high school. (And I'm not completely certain I have the story right, but I trust someone will correct me if necessary!)

Grandpa, Grandma, and their three children: Alyce Ann,
Bob, and Kathryn (my mother)

When my aunt asked me recently what memories I have of Grandpa, the first thing that jumped to mind was taking walks with him. He'd farmed most of his life, and after he and Grandma built a house in town, he walked frequently. When grandkids were around, we were invited to join him. Inevitably, he'd point out quarters lying on the ground and urge us to "pick up that quarter you dropped." At first, we were confused, "But Grandpa, I didn't drop a quarter!" but eventually we figured out that we stood to profit from his little game.

I don't know when I last saw him, but the last time I remember spending time with him was in 1988, en route from Oregon to Missouri with a friend after we'd finished our sophomore year of college. Grandpa didn't have any idea who I was, but he was friendly. And when he'd start to grow concerned, Grandma's presence comforted him. My friend thought Grandpa was wonderfully clever, because he didn't realize that every joke was one he'd been telling for years: "How'd you sleep?" "I don't know. I had my eyes closed."

Grandma and Grandpa with all their grandchildren when we celebrated their 50th
wedding anniversary. Back row: Mark, Bryan (my brother), Grandma, me,
Paul, Heidi (my sister). Front row: Lori, Nancy (with Robby), Grandpa. I suspect
Grandpa checked on each of us as he left.

I confess that Grandpa wasn't much on my mind in his last years. He was living in a nursing home when his care became too much for my grandmother to handle, and I didn't get regular updates on his status, probably because there wasn't that much to say. But one night, I woke up in my bedroom in Seattle to see him in the doorway, looking in the way a parent checks on a sleeping child. I smiled, comforted by his presence. The next morning I learned that he'd died.

As little as I understand about what happens when we die now, I knew even less then. But I felt strongly that he was making the rounds, checking on all his grandchildren, and I was pleased that he'd regained his memory of us, of me. I didn't go to his funeral, but I was grateful for my goodbye.

He was a good man, and he is missed. A few months before she died, Grandma told Sandy and me that she'd been seeing him in dreams, appearing as he had when he was younger and healthy. I'm hopeful that they've found each other again, and that he can bask in the love so many have surely sent his direction on this, the 110th anniversary of his birth.

Life, interrupted

It's been a year now since we had a plan we felt confident in and believed that we'd get to another "new normal" with Sandy recovering from brain radiation and embarking on a new chemo regimen.

I've been dreading this day and all the days that follow through July 19. But the sun was shining brightly this morning, and I had encouraging, supportive dreams lingering in my head when I woke. I was surprised to find myself in a good mood. And then I realized that today is a kind of release in a way.

Our lives were interrupted one year ago today. We were thrown off course, just as we'd been in November 2008 and in May 2010. Each time, we set aside plans and goals as we dealt with the current crisis. And we never quite got to return to them again.

Now, with no apparent crisis looming, I can pick up the threads where we dropped them and resume the life we wanted to have. It's not the same, of course, as the plan was to do things together. But the things themselves? I can do them on my own, for both of us.

A year ago today, as we walked home from radiation, Sandy was in a great mood. She felt strong, energetic, relieved to be through the first radiation session and on the path to her next chemo. After feeling miserable all day the 14th, she had no neck pain and she was having a good hip day. In fact, she felt ambitious and talked about going to a movie or gardening that evening.

We decided against walking to the movie theater once we'd gotten home, just in case she'd be tired later. And we never got outside to garden. She lay down to read email on her computer and soon had a raging headache, the start of the fast slide down.

Ten years ago, she was bringing order to the area under the
sumac tree (which is much larger now, as are the birches on
the right side of this picture). The yard looks much different
now, but it's just as chaotic after years of neglect. I'm enjoying
the progress I'm able to make on it now, as would Sandy.

That's the moment of interruption, as I've internalized it. And that's the point from which I must gather up the pieces and proceed. I considered going to a movie this evening at Central Cinema, the theater we'd planned to go to last year. I may still go (they're showing Doris Day's "Pillow Talk"), but more likely I'll garden, making progress in the areas we'd hoped to work on last year.

Meanwhile, I realized I've already taken my life off pause. I'm re-engaging with community groups in a way that I haven't really since Sandy's first breast cancer treatment in 2006. I'm joining the RSVP group ride (Seattle to Vancouver, B.C.) in August; before we learned that her cancer had returned, Sandy and I had hoped to do the RSVP in 2010. I'm starting a new book project, because I'm able to work through the summer this year, as I haven't been in the past few years.

As hard as the next five weeks are likely to be, Sandy's not in pain, and she's not dying. I can process all the feelings I couldn't face while we went through it all last year, remember every detail necessary for healing, and still be moving forward in 2012.

She's been around a lot this week. Three mornings in a row, I had visitation dreams, and the last two days I've had non-visitation dreams that were all about being with Sandy. (In the visitation dreams, she'd died and come back. In the non-visitation dreams, it kept coming up that we knew she was dying, even as she was active and vibrant and involved in the world, certainly a sign that my subconscious has been watching the dates.)

It's a sunny day. I know it's much easier for me to be optimistic on a sunny day, and I know that while the 15th was the day that everything changed, most of the day was actually quite good. So I don't know how hard the 17th, in particular, or the 28th or the 30th, or any of the days in July might be. But I felt a shift this morning, a sense that the calendar had come back into position and I have another chance to have the summer we wanted to have: a summer without crisis, while I celebrate and remember Sandy and the life that we shared. 

Echo results

A year ago yesterday, I saw my cardiologist in the afternoon, following our appointment with Sandy's oncologist in the morning. My heart was fine, and the doctor reassured me that he didn't expect anything to change with my valve for at least a decade. Two days later, everything went to hell.

So it may not have been the brightest move to schedule a cardiology appointment for June 14 this year. My body has been tensing in anticipation of the painful anniversaries ahead in the next five weeks, and I already associate my last cardiology visit with Sandy's sudden decline. My body memory has conflated everything that happened that week. (Hmm... I wonder whether paying my estimated taxes tomorrow will upset me, too. Probably.)

As grief has ebbed a little bit, I've been struck by how calm my life is now. For more than five years, we moved from one crisis to another. As soon as one thing was resolved, we received devastating news about something else. Every time I started to breathe a little more easily, poking my head out and starting to engage in the world, something threw us off course again. Now, except for the horrible void in my life that is Sandy's absence, everything is going smoothly. I'm able to enjoy the calm and set forward-looking goals instead of spending all my time adapting to changes and trying to stay ahead of them. I have now the sort of life I always wanted to get back to with Sandy: a life of gardening, biking, friends, work, politics, and volunteer engagements that flows according to my interests and energy levels. It had been a long time since either of us had that. And I don't trust it.

My cardiologist said I can do anything I want. But what I
want is to play with Sandy. And I can't figure out how to do
that, even with a healthy heart valve.

So I went in this morning worried that my echo results would be the next devastating news. After all, we alternated before: Sandy's cancer, my heart, Sandy's cancer; it's time for my heart again, right? When I told my cardiologist that I'm waiting for more bad news, he smiled and said, "Well, you won't be getting any from me."

My echo results were good. Grief has apparently not done any harm to my heart; my valve looks great; heart function is normal. The bits that were narrow or slightly enlarged before are all just as they were two years ago. He did a pretty thorough physical exam, spending more time observing arteries in my neck than usual, watching the waveflows and other aspects of the pumping blood, and pronounced it all to be acting as expected. He told me to keep doing whatever I want to do, enjoy the bike, have fun, and to come see him again in two years, when we'll do another echo just to check on everything.

Honestly, I'd expected to feel tremendous relief if the echo results were good. (And I knew, logically, that they probably would be, despite my superstitions.) But I didn't feel relief. I just felt exhaustion and despair. A year ago, despite my focus on Sandy, I'd left the office delighted that he was so optimistic about my valve. I'd been buoyant when I returned home and shared the news with Sandy, who was also pleased to hear it. But my healthy heart valve didn't keep Sandy alive last year. And it won't bring her back this year. And this week, with June 15 coming tomorrow, I'm not sure anything short of her return could actually leave me feeling buoyant.

Belonging

As we move into summer, I continue to straddle 2011 and 2012. I know mentally and physically where we were and what we were doing a year ago, even as I navigate current projects and interactions. I don't know how interesting it is to anyone else, but I am fascinated — okay, obsessed — with the path to Sandy's death.

A year ago today, I returned home from a weekend in Portland, where I attended my college reunion and had a good visit with my dearest friend. Originally, Sandy was going to go with me, but she'd decided during our vacation that she was too exhausted to travel again so soon. I reluctantly agreed to go alone, but as the weekend grew closer, both of us were uneasy about my leaving town. Sandy was still fighting nausea and neck pain, and now she had severe constipation as well. (Severe doesn't even begin to describe the agony.) She found some relief, finally, on Thursday, and said she was okay with me going.

She'd planned ahead for the weekend alone, structuring social engagements and down time so that she'd have support and rest in my absence. Friday evening, she went to Vifians' for their regular social dinner; Saturday, she drove to her therapist's office for a special session in which they did baseline brain testing so we'd know if she suffered damage after radiation (Sandy's idea); she also had a phone date with Laura that day; Sunday, Colleen came over to do Reiki with her.

Still, I almost didn't leave the house Friday morning because she had a massive headache. But I did, and by the time the train arrived in Portland, Sandy had had a nap and reported feeling great. That was her rollercoaster all weekend: severe migraines and then great relief. We talked on the phone several times and exchanged many email messages in the 55 hours or so that I was gone. I was proud of her for taking good care of herself, and I remember feeling some relief and freedom that Saturday, the first day in many months that I hadn't been focused on taking care of Sandy.

I was glad to be home, and she was glad to have me back. She seemed small and fragile when I embraced her upon my return, a difference I could recognize only after a few days away, apparently. Though I'd enjoyed my visit with Tonia and a few others, I came home appreciating Sandy and our life together.

Sandy put a lot of energy into creating and nurturing community,
and many competed for her attention and affection. But still, she,
too, often felt like she didn't belong. Shortly before she died, she
said she hadn't been feeling like she had many friends, but now
she felt very "friended." I'm so glad she had the time to hear
from so many people who loved her and to internalize it.

Reunion attendance is fairly random, with only a small percentage of people returning each year. The people who were there weren't people I knew well, and I felt like an outsider much of the time we were actually on campus. College was the first time in my life that I felt accepted, appreciated for who I was and am, and it's disappointing to return to campus and realize that that feeling was dependent on the specific people and the circumstances of the time.

Here's what I wrote a year ago today:

My time at Reed was all about the people I knew and loved and who loved me, about feeling like I belonged, like I was safe to express myself and to be myself fully. About pushing my own boundaries, opening my mind, learning how to be social. The classes were secondary. The jobs were secondary. It was about being at home in the world.

But I was no longer eligible for financial aid in 1990, and I didn't get to return to Reed, didn't get to find that home again, or to grow older with it, to shift and find new friendships, new passions at Reed. Didn't get to go through Junior Quals or to write a thesis and defend it. It's possible I would have failed, flamed out, no longer have felt that sense of belonging. It's possible that I'd have come to hate Reed, as so many do. But I'll never know.

And reunions is salt in that wound, because the people who were there from my era were not, for the most part, people I knew and liked. And I felt, yesterday, that they'd all shared in something I hadn't been a part of, that I wasn't "real."

. . . I think the feeling of not being known was more poignant than it ordinarily would have been because it's my greatest fear about Sandy dying. I fear I'll never be known again. I don't want to spend fifty years — or however long I have left — aching to be known, understood, embraced, and adored.

And I think realizing how not-in-control my not returning to Reed was also leaves me feeling helpless, because I wanted Reed, needed Reed, loved Reed very powerfully in 1990, and I was powerless to return. It leaves me feeling ineffective, not sure I have the strength or the skill to save Sandy, or even to help her have a high quality of life.

The entry goes on to document the plan toward Sandy's health: successful and uneventful radiation to her brain, a recovery period, Taxotere, and then a break from chemo because the cancer was in check. Always, there was a plan, a path to find our way to good times, a way to talk myself back from any despair I felt at the idea of losing Sandy. Always, that is, until July 5.

The night of June 11 was the last night I spent away from Sandy until she died. And I've spent every night in our bed since her death. Gradually, I can feel my restlessness for travel — even just to one of the islands for a weekend — is competing with my unwillingness to spend a night elsewhere. Many things that seemed impossible at first later became doable, and I know this will, too, in time. But feeling so known and loved again? It's harder to see that happening.

Family ties

Our nephew, Collin, graduated from the University of Washington this weekend, providing a lovely excuse for family members to travel from distant lands, and for a gathering of visitors and locals. I took advantage of the visit: I ate dinner with our other nephew, Kyle, and his girlfriend, both in from Boston; recorded a marathon memory session with Sandy's mom and uncle; and enjoyed catching up with everyone else at the graduation party.

Thanksgiving, 2002, with the requisite pinochle game. We usually
went to family gatherings together, but a few times I went alone
if Sandy was ill or out of town. I didn't know I was practicing for
widowhood, but having that history makes it easier now, certainly.

When I told friends what I was up to this week, I invariably referred to spending a lot of time with "Sandy's family" — and of course, they are Sandy's family. But they're also my family. Not my family of origin, but my family of accession. The kids don't introduce me to people as Aunt Sandy's widow; I'm just Aunt Brie.

2002 was the year we all made gingerbread houses. This is the one
Sandy and I assembled - not as tidy as some, but homey.

I don't know what the norm is for widows and their in-laws, but I never had any intention of letting these people slip out of my life. Nor do I intend to lose touch with Sandy's closest friends. In most cases, though, it's not even about Sandy. After all these years, I have my own relationships with her parents, siblings, aunts and uncles — and her closest friends became my friends, too.

There's no revelation here, just a pause for gratitude that Sandy's life was full of wonderful, caring people, and that mine is, too. 

Enjoy the ride!

Thank you to everyone who proposed wording for Sandy's bench and to those who suggested ways to think about it.

While I was pondering the messages I received, I heard Sandy's voice say, "Enjoy the ride!"

It wasn't just on her bike that Sandy appreciated the
world around her. This photo was taken in Sevilla in
1999, because Sandy loved the morning glory. Our
friend was astonished in 2001 when we toured Notre
Dame in Paris and Sandy was mostly interested in the
flowers and landscaping outside the cathedral.

It felt right. She loved actually being on her bike, feeling the wind on her face, using her body to propel herself through space. She was fully present when she cycled, noticing changes in neighborhood gardens, fellow cyclists, and especially dogs along the route. Though she wasn't wild about trudging up hills, especially with cancer and chemo fatigue, she confessed to me that she did enjoy them when she rode alone and didn't feel the need to keep up with anyone else. So in late 2010, when she was still able to ride significant distances, we began splitting up as we started the ascent home. I'd ride on ahead and know that she'd have a better time on her own. Usually, she rolled up to the door before I'd even gotten my bike inside, but she was grinning instead of complaining.

I'm not always so present. Riding with Sandy often brought me back to the sensual aspects of the ride itself, but when I ride alone, I frequently tick off the miles, pushing myself to get to an endpoint. Last spring, I was talking about a ride I'd just finished alone, home from some appointment or other, and she looked at me kind of funny and said, "Are you enjoying your rides?" I realized I hadn't been.

After "Enjoy the ride," more words formed spontaneously in my head, and this is what I think I'll have put on the plaque, assuming there's room for it:

A destination is just an excuse for the journey. Remember to enjoy the ride!

Just having those sentences floating around in my head the past couple of weeks has led me to experience my rides more fully, and I know that's a message Sandy would happily pass on to strangers and friends alike. 

Homesick

Grief is exhausting. I learned quickly that I had limited energy and very few resources to draw on after Sandy died. I adjusted my goals accordingly, and just accepted that I wouldn't get much done.

After many months, I was able to handle my regular work schedule, steady exercise, and some social activity. I foolishly assumed that the trajectory would continue apace and I would feel up to a robust, fast-paced schedule soon. Nothing else about the grief process has been linear, so I've no idea why I thought regaining my energy would be. At any rate, I was wrong.

What's thrown me off is that the nature of the fatigue changed. It was easier to understand exhaustion when I spent much of every day with actual, physical pain in my chest. Now I sob only a couple of times a day, and the storms often pass without leaving me too disspirited. I've racked up several long bike rides, marathon gardening sessions, social gatherings, and other milestones that usually signify a return to health for me. But I'm still having trouble catching my breath; I still collapse in front of the TV with cats and puzzle books for hours every evening; I still find myself puttering instead of going to bed at night, and my sleep is hard and thick.

I'd started looking for physical reasons for my fatigue. I tweaked my diet, attempted regular sleep habits, changed exercise patterns, did more yoga. I worried more about what my echo is going to show (and I won't know until next week, though the tech made happy noises). But the last couple of nights, my dreams have emphasized my grief and the tension that comes from traversing dangerous terrain. This morning, I heard myself saying to the cat, as we gazed at the rain out the living room window together, "I'm so ready to go home now."

Our trip to Spain in 1999 was full of adventure, stress, triumph,
and wonder. We spent a little time in Madrid, but mostly we
were in Sevilla and Granada. The weather (snow at the Alhambra!)
tested us, as we'd packed for sunny - not snowy - Spain. We used
our halting Spanish to purchase a length of wool fabric and
have it cut for use as scarves/shawls/hand warmers, and we
were incredibly proud of ourselves. We enjoyed the trip, but
we were very happy to get home to our familiar neighborhood.

That's when I recognized this current fatigue. It's the weariness of homesickness, of traveling through lands where I don't know the language or the culture. I've often enjoyed travel, but many aspects of it create a tension in my body that only eases when I return home. That tension comes from missing routines and rituals of daily life, from lacking control over things I take for granted ordinarily, from having to be ready to adapt and change plans whenever anything goes wrong. I love seeing other places, but I especially love appreciating the comfort and familiarity of home when I return.

And that's what this feels like. Whereas the fatigue last summer and fall was often a result of the effort I put into resisting what had happened, this is more the weariness that comes from a long, unwanted journey and the longing for normalcy. Even more tiring, I know that I can't go home. I may be able to create a new home, but I feel a kinship to immigrants a few centuries ago, people who left all they knew and loved for a new land before there were cellphones and jumbo jets to let them easily move back and forth. I have to make do with memories and the equivalent of long letters sent from overseas. There are pieces of my homeland to give me comfort (Rainier cherries at the grocery store last night!, bike rides with friends, the cats), but no one can give me the home I crave.

I think my exhaustion has increased over the past month, as I've been simultaneously reliving our lives a year ago and trying to face the challenges of 2012. This morning I made a note to myself to see my therapist more frequently in the next several weeks, until Sandy dies. I scratched it out and wrote "until the anniversary of Sandy's death" but the error was telling. In my mind, in my body, Sandy is dying, but I already know how it's all going to play out and I can't do anything to change it. I am helpless. I want to go home.

We need your help to win this one

We never got our wedding, but she did persuade me to wear
a tux on our first anniversary. It was at Sandy's request, and
she liked it, but she complained that it hadn't been properly
fitted. So I promised that if I ever wore one again, I'd put
up with all the fussiness ahead of time (a huge concession).

Sandy wanted to marry me, and as you know, the marriage equality bill that the Washington state legislature passed this year will eventually convert our registered domestic partnership to a recognized legal marriage. But there's a catch: opponents appear to have collected enough signatures to attempt to overturn the law. Washington voters will need to approve the law before it can go into effect.

So the campaign to defend the law — Washington United for Marriage — is swinging into high gear. We need everyone to help us make marriage equality a reality in Washington state.

Here's the context: No state has ever voted to support same-sex marriage, and every state that has had a marriage-ban amendment on the ballot has passed it. While public sentiment has been changing rapidly, we just lost big in North Carolina. So it's far from certain that we'll win here in November. However, our state is the only one that has upheld legal recognition of same-sex couples at the ballot box: In 2009, our legislature expanded the existing domestic partnership registration to include all the rights and responsibilities the state gives marriage. It was called the "everything but marriage law" and opponents challenged it. We won in a referendum, despite our opponents claiming that the law granted us marriage. So there is hope.

There are four states with marriage equality measures on the ballot this November: Washington and Maryland both face referenda votes on recent legislative action. Maine is voting on an outright initiative to enact same-sex marriage in the state, after we lost a referendum there a couple of years ago. Minnesota's ballot will include an anti-gay marriage amendment.

I'm incorrigibly optimistic, and I'm also frequently disappointed. That said, I really believe we can win all four of these measures this November, springboarding off the momentum following Obama's recent public support and the strong court cases working their way to the Supreme Court. But we can only win them if everyone gives it their all.

So I'm asking for your help. It's about justice and equality and doing the right thing, of course. But it's also about Sandy. Please help us achieve her deathbed wish; help us get married in our home state.

Here's how to help if you're in Washington:

• Make sure you're registered to vote at your current address.

• Sign the pledge to vote to approve Referendum 74 at washingtonunitedformarriage.org.

• Vote to APPROVE Referendum 74 when you get your ballot, and return your ballot early*.

• Ask others in your family and community to register, pledge, and vote too.

• Donate to Washington United for Marriage. Our opponents have received pledges of millions of dollars from national groups. We need money to run a successful campaign.

• Volunteer with the campaign to make phone calls or go door to door. If you've never done it, it might seem scary or intimidating. But most people find the experience rewarding because you have the opportunity to have real conversations with people about something you care about.

• Volunteer to help out the campaign at your local Pride festivities, a perfect way to start talking to people about the issue in a friendly environment. You don't have to be LGBT to attend or work a booth at Pride; we love our straight allies!

• Talk about it! There are countless ways to express your support for marriage equality, and we know that conversations move voters. Watch for opportunities, or create your own. You don't have to be preachy; just share why it's important to you. Who do you know who wants to get married? (Hint: you can always talk about Sandy and me.) Why is your own marriage important to you? And if you've moved toward supporting same-sex marriage over the years, share that story too. What changed your mind? There are many angles, and remember that you don't have to change anyone's mind in one conversation. But each conversation or positive encounter tends to move people in the direction of equality. Be part of that movement.

• Write a letter to the editor in support of approving Referendum 74. Call in to radio shows on the topic. Put out a yard sign; put a bumpersticker on your car. Sometimes people just need to know that their neighbors support a position to give it another look.

*Sandy and I voted in the 2010 primary, and we handed our ballots to the mail carrier the day before the election. But somehow those ballots didn't get postmarked until the day after the election, and so our votes didn't count. We were both heartsick about it. Since then, I've either dropped ballots in offical local ballot boxes or put them in the mail several days early so I can monitor their receipt at the county elections office and call if they haven't arrived by election day. I urge everyone to do the same.

Here's how to help if you're not in Washington:

• Talk to the people you know in Washington and ask them to get involved, and especially to vote to APPROVE Referendum 74 this fall.

• Donate to the campaign!

• If you live in Minnesota, Maine, or Maryland, get involved there in the same ways I've described above. Money, volunteer time, and conversations are what are going to win this thing in every state.

• Anywhere you live, find opportunities to have conversations about marriage equality. We need to keep moving forward everywhere.

I look forward to an active election season, starting today, and to celebrating with everyone in November! Thank you in advance for your help and support.