Someone gets it

May 26, 2011

Dear Supa,

It's almost the fifth anniversary of Gavin's death. In the past, I would not have sent a note. I would have thought, "Sending a card is superfluous and even presumptuous. Supa certainly knows the date. You only talked to Gavin a few times. And you're lousy at keeping in touch, so it's weird to send something now."

From talking to you and reading your blog, I've learned that these thoughts aren't meaningful. Even though they still crop up, I'm ignoring them. I want you to know that I am still sorry for your loss. I will be thinking of you and Short Stack, especially on the 2nd. And I'll be hoping peace will be with you, Shorty, and Mr. Fresh.

Rebecca

Two types of people in the world

During my undergraduate class in Homer, I learned there are two types of people: Iliad people (emotion, war, death, loss) and Odyssey people (exploration, magic, critters, homecoming). Our small department taught just one of these each year, and I was thankful to have hit year two when the Iliad was "on" so I could enjoy the language without resisting my grain.

By senior year, after a few real-world jobs and other dabbling in the adult world that "deals," I’d decided there were, instead, two types of people in this world: people who divide the world into two types of people, and everyone else. I was determined to join the latter group though I  knew it would be a tough transition.

I was tired of black and white.

My old house, my old days

Snapshot of yard and studio slot of old house, flat and shot on hearth tiles in new house.

I found this snapshot in a pile a little while after Gavin died, doing that endless sorting of condolence cards and photos and to-do lists that widows do. I called the picture "halcyon days," using a mental tone of irony and fondness. Some griefy evenings I couldn't stop looking at it while the microwave hummed. See the view from our back porch, golden light one tolerable summer evening after hours of tilling for a new vegetable bed, and a shed whose 1000 pieces and predrilled misfit holes nearly drove us batty. Look at that past! It was pretty, and ordinary, and all that land was mine.

I'm selling the old house, the one we bought together, where I experienced boatloads of disappointment. More than that, it's hard for me to admit that I scuttled off so many dreams BEFORE Gavin died. Those are the ones I'm grieving now.

I'm some combination of steeped in sadness and serious avoidance mode, using the driving-backwards-fast, corner-cutting, curb-jumping skillz that I gained after loss, merely to survive.

Approaching the five year mark, I'm finding all kinds of others in the same year are having similar experiences: like any anniversary, all the tension is in the approach. At least, so far. Thinking about earlier losses and this house a bunch — the house we failed to build into our dream house, the one we could barely afford that is worth a bloody fortune now, where we built Kevin his perfect studio, where I went to grad school.

Going over our home with an agent yesterday reminds me of all the dreams I dropped long ago. Losing a spouse young is the death of so many futures, so many opportunities, but I hadn't taken those seriously. Now I can't forget the ideas I had of being a business genius, a gardener of the too lush (we had a huge lot), of being parents easily, of accepting so much together without the rest of the world butting in.

Infertility chopped away at us, then cancer butted in really hard, feet first, so it would hurt the most.

Nostalgia IS a disease. Look at the light… I thought I could conquer all those weeds (I did push back a huge bed of English ivy, hundreds of square feet). I remember, now, what life was like before I was a parent: a long garden day, working till the last glimmer of the sun fell, then taking a shower without interruption, going to bed whenever I felt like it. We used to make real dinners. Gavin did all the cooking, I hope you understand how this affected the bargains I made…

I'm reminded of our inertias and disappointments as a couple. I thought he was handy. He thought I had no ambitions. Maybe I thought that, too. Either way, we barely painted the walls, never fixed the catastrophic kitchen, and the weeds coexisted with the plants I liked and the ones he liked, happily or not, but sharing soil for years. A year after I've moved out, the weeds have taken over everything again, and that annoying shed is the perfect studio we built for him, and for me, that we opened just before his diagnosis and so, has lain mostly fallow too.

I made a lot of compromises those 15 years, but holding my breath the whole time: it's taken me this long to find out how much that hurt and how my true grain runs.

Avoidance and bitterness are crappy tools to use in the new future. I'm hoping I got some kind of discount on the midlife crisis when I got the grief and single parenting package. I can't afford to be macho and insist that losing futures is no big deal. I should still have a few futures left!

Here's to what's next, and being brave enough to see the golden light of tomorrow.

A very widowed day

I am having a very widowed day, even for a Monday.

One of Gavin's best friends is dying. He had a massive aneurysm and wasn't found for a few days. I tried to go up and visit him, even after I found out, despite the different name, that it was the same hospital where we saw our oncologist, where Gavin had chemo all summer one year and a dreadful surgery that fall. That I’d again be crossing the vast clean lobby, but this time without my love in a wheelchair. The same parking lot, with native plants to color-code each level, so friendly – a hospital parking lot.

Don was -- not just a friend. We spent a lot of time with Don and Linda before their divorce, which depressed us. Don was nearly Gavin’s twin, the same suit size, same height, similarly thin, handsome, and clean cut. Their art was even similar, their concerns and conversations and love for Guy Davenport and theory. Don has a blacker side than Gavin did, though, and loved obscure poetry, had a crazy romantic self who appeared once in a bit, insisted on living rougher and never started a family.

He visited Gavin on his last day, in hospice, and a week before that, was one of the few I invited to the ICU. I cried talking to Linda about it – she was his only one, traveling from her new home to take care of some things and watch over him.

I feel I must go in tribute, too, in return. To thank him for his kindness – we visited after I took Shortie to the ballet, and she padded about his studio after him. That was the last time I saw him – just when I was starting to date, so two years ago plus.

Even with a life hanging, my pilgrimage was prevented by a very trivial widowed chain of events. As always, you can have something spiritual and important and gory and real, and still get messed up by worry and paperwork and the way small bits of time pass you by.

First, Mr. Fresh listened to Car Talk during his morning workout and decided I should not drive up to the hospital with my bad brakes. There was “another problem” it could be and he “isn’t crazy about the idea of losing me just yet.”

I made an appointment with the repair shop and took it in. They’d give me a loaner: even better for the long drive up to see Don. When I showed up, they pointed out that my license was expired. Who KNEW they expire on your birthday? A side effect of wishing that day away every year since the diagnosis, which was the day before my birthday. Second widowhood-related complication.

The MVA was smooth and easy, but still took an hour. And then it was time, as it is always time, to fetch the dinner and the daughter. Yes, I got something important done, which had to be done, but now I can’t take the car in until tomorrow and drive the loaner up to the hospital.

It’s a small setback, but that’s what every day is like, when it isn’t dead serious or grey during grief: a set of menial tasks to please someone you don’t really care about. It’s the company that makes it all worthwhile. At least, that was what I thought the whole first year after my loss: the deliciousness of having company and the emptiness of life without that one person. So I got another flashback, one of perspective.

And that’s what makes me saddest: that Don lay there. That Linda was the only one to be asking if there was work to be delivered to a show in November (most of what we talked about). To mourn, but only as a friend, because the partnership ended long ago. She’ll be grieving only memories, not any present or future.

Sometimes people say “no one should die alone,” which is sort of a point, but it’s very important to note that we do all come into this world alone and we all do die alone.

But as much as I hate being a widow, I think the proper expression should be: No one should die without widowing someone. It’s only in giving love that we live well, and we don't need just a caregiver, but a witness. No one lost Don’s future and that’s a crying shame.

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Somatic Identification, Part 2

What is somatic identification? For me, in widowhood, it describes situations when I’ve seen my body imitate his, even though he is no longer here. It’s a little like sympathetic pain. Since he's no longer in this world, maybe it's more like a phantom limb: I want to keep caring for him even though he doesn't need it?

Usually it feels more like my own reluctance to move forward -- my desire to stay back in the world of the ill, to understand where how he felt when he knew he was leaving.

First I had the typical grief symptoms that manifest in the body: fatigue and depression and needing more extra sleep, combined with insomnia. I’m going to guess that these don’t really count as a sympathetic response, even though they mirror what his body went through to some extent, because grief is, itself, very physical. It isn’t well understood, but it is typical.

The somatic identification that affects me has happened late in my grief: as most other factors in my life are fairly resolved, no longer raw, and stable, I am a peculiar hypochrondriac. This area of my body’s response to loss is part of my own complicated grief – and I am pretty sure that in order to progress I have to get past it.

Here’s the form it’s taken in my life as a widow. First, of course our life with cancer (and with several issues before that) was what I called “highly medicalized.” So after he died I avoided doctors. All appointments were made late, many were broken and rescheduled multiple times. (I was much better but not perfect with my daughter’s health.)

Second, Gavin had a heart problem when we met, lived through open heart surgery early in our relationship, and had an arrhythmia and pacemaker for the last 12 years of his life.

When I finally got to the doctor for a physical she saw an inverted “T” in my echocardiogram… an odd pattern that could indicate a heart defect or heart disease. In the overall picture of my health, and given the odds, it was unlikely to be something serious. It scared me, but not enough to do anything.

When she wrote the referral, I saw that it was to the practice that Gavin went to for his defibrillator checkups. They always liked him so much and told me so. The technician came to hospice to turn off the device on Gavin’s last day and stopped on the way in (or out?) to tell me how sorry he was and what a lovely man Gavin was.

My poor primary care doctor had to write that referral three times in three years before I actually went.

It wasn’t easy to go to the appointments there, but I had to go over and over because insurance kept not authorizing one of the tests. I suppose repetition and negative focus on Blue Cross helped the visits get easier, and I did bond with a lovely nurse who asked me, “you wrote that you’ve had exceptional stress in the past few years….?” I spilled and she revealed that she’d been widowed ten years prior with two young kids.

I suppose I turned it around by making this new connection (and I’m fixing her up with my friend’s brother, too). All the tests came out fine: no problemo.

Third, I got weird visual disturbances. The first one, I thought was just because I hated my job and it went away after 20 minutes. The second one might have been PMS. My eye doctor looked at me worried and said, you better ask your primary care about that.

The doctor hesitated, saying it was likely migraine “auras,” but those were unlikely to come on for the first time at my age. Her pen hovered over the referral as she considered the many unnecessary MRIs performed each year and how my insurance might treat it.

I told her I’d err on the side of caution because of my husband’s cancer. I might be hypervigilant but I couldn’t put aside the thought: BRAIN TUMOR. BRAIN TUMOR. Gavin had two tiny brain tumors discovered during his last week. Although they were asymptomatic, they were one of the few things that actually spoke to me of death: I had just heard of a paper showing that most patients with brain mets survive 30 days or less. It was a number to fixate on. Sometimes I wonder whether I should have told him the result of that scan that last week.

We turned down that treatment – whole brain radiation, even without knowing how late it really was. It’s famous for awful side effects and as it turned out, he was gone 4 days after they would have been able to “squeeze him in.”

With these traumas on hand you might think my vigilance would have been productive, that I would have had an impulse to preserve myself, but no. While I could ask the doctor for the referral and promise to take care of it, I couldn’t actually call or show up for at least two years (two referrals or three?).

The test, which was held at the imaging center where Gavin used to go for his scans, including the disastrous ones, and the ones that were misread, and the one where he threw up, went fine.

(I celebrated not having a brain tumor with my first-ever two-day migraine.)

Fourth was one -- thankfully -- panic attack. Gavin was plagued by dozens per day during the period of his worst/best therapy, the one which stole his breath and marked the worst paradoxes of our time in treatment.

Will my body become unstuck when I have the last tests and find out I really AM going to live?

Or is this my body's way of teaching me to have more empathy, more compassion? A way of putting myself in the way so I can be sure to forgive and heal myself? Our bodies know, in grief, and in this way, I finally hear that my body has been holding something back.

Musical Monday: Hanging by a Moment, or, Somatic Identification Part 1

"Hanging by a Moment" by Lifehouse is the song of my experience of my husband’s last few months. I’m talking about the period during which he dissolved: after the back surgery, before the shingles.

The song is aggressive and male and unlike all the other music I like, but it was on the radio all the time. The lyrics are final: “there’s nothing else to lose,” and stubborn: “I’m standing here until you make me move,” and all about extremes, but what got me glued to it was the refrain:

“I’m falling even more in love with you.” I sang it to myself over and over, every time I got in the car, every time I went somewhere on my own, taking the few moves I could make with any honesty and directness, a few trips with any direction at all, however mundane.

"More in love?" WHAT? Was I trying to convince myself that cancer brought “gifts?” Gavin was falling away, down to 100 lbs and shrinking as I watched, as I tried to move forward. Did he know he wasn’t part of the plan any more? Or was I not making any plans? Was it a mantra, nonsense, something in the chords that hit me? Or just the sense of uncertainty, that you can be strong and whatever but you have no idea what's next? Isn't that part of what the young blond dude (so young!) is saying?

It sounds, to me, like some truth. My body was inextricably stuck to his as it broke, our lives were shared and splitting silently down the middle. It’s called somatic identification, and it marks the last bit of grief that I have left to shed.

"Falling, hanging, desperate." The truth of my life as he was dying. There's a metallic drone in the song under the whine of the bass: and a beautiful buzz that makes me wonder if Lifehouse is a faith-driven act (despite the lyrics) or just your average white band.

I listen to this song, over and over, to recapture what I felt, the fact that I WAS feeling though it doesn’t seem like it when I look back. I’m convinced now I need to do this, though I’ve heard the advice over and over, this time it came from peers, not from Freud. This time, I was listening.

My peer Matt Logelin, author of “Two Kisses for Maddy,” said, “it was only by remembering and writing down those last moments when I saw Liz -- the smells, the sounds, that I became free to live again, and eventually, to love again.” (I paraphrase; he was more direct and less corny).

My peer Jennifer Silvera, author of “Believe,” said, “I had written. ‘We were in the ambulance, it took him to the hospital, but he was already dead.’ My agent pushed and pushed, insisting the story was more than those 3 phrases, but I didn’t see it, and when I did, it was ten pages of moments.” (I totally paraphrase and probably have important details wrong). (Matt and Jennifer were speaking at the author’s panel at Camp Widow). And you know what? I believe them. I’ve started posts on this topic a dozen times and quit.

I’m going to listen to this macho anthem over and over again until I get it right this time. Or wrong, but either way – DOWN. I'll get my own words down and let go of these.

I Heart Camp Widow

Of course I had to redo my Powerpoint at the last minute. Friday evening
in the hotel bar I told Andrea how I derived the name "Supa Dupa Fresh"
and she nearly fell asleep. "Fine, we'll say I took that name
because 'I like soup,'" I conceded. And so, a legend was killed.

Camp Widow, a weekend of events in San Diego hosted by the Soaring Spirits Loss Foundation, was the highlight of my year. I spent many months preparing my presentation on widows in social media, “Grief? There’s No App for That!,” and helping promote the event to my widowed friends and followers on Twitter and Facebook. I relished the chance to meet in person many folks who’ve become close friends online over the past few years. And I was honored (and totally shocked) to receive an award from SSLF for connecting so many people with resources with each other.

Even though I started with a serious lead, I can’t make this into a comprehensive article about this outstanding weekend. There are so many other perspectives – Candice has listed most of the blog posts, and others are here and here (and more here, here, here, here, here and here -- Holy crap this list is getting ridiculous!), along with two articles in USA Today, including one in which I was quoted.

Instead I’d like to share a few observations. First, the connections are so wonderful to see. If you are widowed, you already know the tremendous power of meeting others who’ve “been there,” how liberating it is to not have to explain yourself, to find those who understand your dark jokes. For many of the 200 attendees this was their first time close enough to hug someone their own age who’d lived with loss. Before Camp, I'd already met scores of my peers in person, and hundreds online, and I know I’ve been exceptionally lucky. This kinship is so validating, such a source of encouragement and conviction – I was a little envious of those discovering this place in themselves, this feeling of not being alone. I was moved to say something new agey: “All these hearts opening up – it’s lighting up the room.” (And then, strangely enough, there were actual fireworks over the harbor.)

And then, through the weekend, I felt a little distant. While I’m still in transition in my life, my emotional needs are much simpler, much less urgent, and not so much about grieving. As my friend Ellen Gerst said, this is a good sign for the rest of you. The weekend was not without pangs: it’s shocking to me, though I know so many of them online, to see in person widowed parents younger than me, some MUCH younger (one with a baby in attendance). And I was inspired by the courage of those who showed up in a strange place, knowing not a soul, in the early days after their loss – many with “0-6 months” on their nametags (each guest selected their own).

Second, the role of social media in making the connections. I loved witnessing the rich and dense web of friendships that had started online, many through my own Facebook activity. One woman told me, “when you friended me you were the only widow I knew other than my great aunt, and now half of my friends list is people like us.” Others toasted (with mashed-potato cocktails) the real faces of people they’d grown to love as sisters from tiny avatars.

Aside from a posse from Widows Wear Stilettos, the largest contingency (23 people) was definitely bloggers: not just the seven from SSLF’s flagship Widow’s Voice, who appeared on stage in a group, but also Candice, Abby, Matt, Andrea, Sarah, Chelsea, Mel, Dan, Boo, Deb, Wendy, Jennifer, WnS, my dear sister Hyla, and the hilarious, stunning Carol, who had the second-most beautiful shoes in the room.

My presentation on social media went “fine” (as we perfectionists say). It had to, given the number of cocktails I passed up throughout the weekend in order to “finish it.” I was trying to be analytical and high-level when people were looking for support and laughs: which you can get online, but perhaps not talk about.

Like so many other aspects of the weekend, the proof was in the pudding: I could see evidence of social media’s value in the connections all around me (and in the award and the attention of USA Today reporter Sharon Jayson), so the Powerpoint was almost beside the point.

Third, the ordinariness of our group: how, when you take away the “drama” the rest of the world invests our “stories” with (to paraphrase Matt, that’s no story, that’s my life!), when you remove yourself from the people Alicia calls “civilians,” the sadness and surprise of our youth and existence and laughter – all the reactions – we’re free. Black or white, fresh or seasoned, young or old, gay or straight, widowed people look like any other group of people: some shy, some giggling with roommates, most with a deep bond to at least one other here, all learning. As I walked back to the elevator after the gala, the “fresh widow” label on my wool shawl invisible as it protected my lucite award, I looked at the gaggles of conversation groups on square beige couches in the hotel lobby: it wasn’t easy to tell who was with our group, and I might have fit in to any of them, too.

I didn’t have a scarlet "W" on my forehead, after all. The role I play was put into relief: I have been widowed, and I can offer hope and share with those in the depths of it, but as a sister and an advocate I’m a handhold* for others.

* To understand this reference and also to be human and delighted you must read or preferably listen to Michele Neff Hernandez’s keynote.


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What is a "remarried widow?"

A remarried widow shouldn’t exist. People ask her, “how can you call yourself a widow if you’re also married?” She’s milking the label. They don’t know what it was like to be married, widowed, and single all at the same time, 3 labels she never chose to wear together. She’s already cheated on a dead man. Nothing gets more absurd beyond that, so she keeps the labels that fit.

A remarried widow may be two things at one time, but she can never be what she was before.

A remarried widow is used to being a problem to somebody. She knows there’s not that much in life that she can control so she doesn’t accept a lot of the rules that others live with.

A remarried widow is grieving, but she is not alone.

A remarried widow is comfortable being two things at once, satisfied with ambiguity, and secure in her definition.

A remarried widow raises children who have one Daddy who died and another Daddy who met him a few times and thought he was a good guy and who will show up at soccer practice.

A remarried woman has made some tough decisions, and has also been presented with some easy choices.

A remarried widow enjoyed her independence, for a moment.

A remarried widow is sharing a story with a happy ending, and she knows you’re comfortable hearing about it only because of the last bits. She accepts this frustrating aspect of socializing but she is still thankful to own all the earlier parts of the story, too, as well as what may be next.

A remarried widow says, in public, that she knows how lucky she is to have had two great loves in one lifetime. Secretly she thinks it’s an option for everyone.

A remarried widow is not remotely interested in your “epic” kitchen remodel.

A remarried widow inspires women whose lives are recently broken, especially those who can’t imagine kissing someone new.

A remarried widow wears black, but never to weddings.

A remarried widow is pretty judgmental about most divorces.

A remarried widow recognizes her duties and her pleasures.

A remarried widow cries at weddings, funerals, and birthdays.

A remarried widow has really good life insurance coverage and so does her husband.

A remarried widow does not want to go through it again, but doesn’t want to die first, either.


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Miscellaneous.

(About the image: This is a sign telling the mosquitoes not to come in our house. “Can the mosquitoes read the sign?” I ask. “That’s why I made it a PICTURE,” she says with confidence.)

This morning as I rearranged my closet in the new house for the hundredth time, just to find a pair of socks, I spilled a box. Boxes in my house are interesting because they usually contain all the things that can’t be filed somewhere, that don’t seem to fit in an easy place – sometimes they bear a label that attempts to bind them up as if they belonged somewhere. I box them because I want to understand them, or at least, get them out of the way without learning more from them.

This box that broke open on my foot let go some of its usual, box-like insufficiently described complexity, remnants of life, odd ends too good to throw out, including home medical supplies. A pillbox with 28 compartments that was expensive. Gauze pads, plain and backed, two sizes, two different types of medical tape. Tiny alcohol swabs to clean injection sites for follistim or IL-2 (or umbilical cord stumps).

Four years after death, 5 years after IL-2, 6 years after cleaning her tiny stump, 7 years after fertility treatment. Am I ready to throw it out yet?

How many other topics are resting, sort of labeled, sort of shelved in my computer and in my other brain, the meat one?

My anniversary season ends tomorrow with the fourth birthday after Gavin’s death, one month after the fourth anniversary of his death. It’s as good a time to clean house as any and there are fireflies all around that house, reminding me that random flickering can be gorgeous. (Why can’t they sneak inside instead of mosquitoes?)

Here are some of the balls of string and broken clocks I haven’t wanted to talk about:
• Gavin’s ashes and their disposition.
• My daughter’s current attitude about our loss.
• All the observations I make of my child at the same age I once was.
• Bloggy content about TV shows, movies, and celebrity mortality and morbidity.
• Philosophies of life, learning, and faith.
• What I’ve done wrong and who I’ve hurt.
• My many non-blog projects.
• My paying work.
• All the really smart, brilliant, wonderful people around me doing the good work.
• Insights about working with social media for maximum bang and buck and deepest connections.
• My delays, my procrastinations, my pains.
• Stories about how different we are or how I’m alone.
• The day we went back to get Shortie an X-ray at the same place where Gavin got his scans (including the ones that were bad, the ones that were misread, the ones that gave us hope).
• How I’ve developed a health issue with every part of the body that matches Gavin’s faults, piece by piece and system by system.

There are others that I will fix up to show you:
• My hopes for the world, my fears for my body.
• Stories that you have asked me to tell about dating, about parenting, about rising back up.
• My big ideas about grief and my keys to change the world so we can fit better in it.
• Your brilliance and your shining light and how I’ve watched you learn from each other, how bravely you’ve shared (I’ll never use anything without your permission).
• Introductions to some people I have loved, dearly and deeply.
• Surprises from my child, and what I’ve learned, and what I look forward to.
• And it is only fun, I think, if once in a while I can preach, pretend I have the answers, and act like I think I’m smarter than other people. I’m sure those are the times I fool no one, but some of the ideas are gems, and some of what I’ve learned in life so far is true, and I know I’ve helped a few people, on some odd days, to find their lights.

Writing is, at its best, like opening a vein. Having an audience gives you better odds of responding with the right tone, the right story, but it has its own dynamic. Before the internet most writers wrote their first work alone and only met the audience and its crippling desires and pulls afterwards. Strangely enough most authors only make money after the first book, if they have proved to even have an audience.

Blogging is different, much faster, much less finished. Writing on computer makes it easy to collect and lose ideas and notes if you want to, if you aren’t sure what you’re doing. A lot of blogging is about stretching your ideas out for as long as possible to create the most impressions. I’m not sure I’m cut out for that.

Writing for you is hard work (work I’ve chosen and which I love). My voice turns ponderous so often, and sometimes people respond to the stuff that’s the heaviest at the time when I don’t want to let it out, and sometimes you laugh at my jokes when I’m succeeding at distracting you or myself.

Sometimes I’m contradictory. Occasionally I have incredible focus and a great idea.

But that box's contents are all over my foot. I have to throw some things out. The deadline is tomorrow. Which means, what, I start then, right?


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