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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Because You Asked

Because so many of you asked, this is the award I received from Soaring Spirits at Camp Widow. I was surprised and delighted and really, really grateful. Thank you!

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Camp Widow: All Packed

Yes, I spent the last minute finishing up badges (pictured) for each and every Camp Widow attendee. What's funny is that the last time I did a manic art project like this as "gifts" for attendees was my wedding to Gavin in 1996. Same number, too: 150. I only realized it as I glued the fifth batch of little felt circles (the 1996 ones looked pretty different, but there was still lots of glue on the kitchen table, like now).

Yes, I am very excited about speaking on on widows and social media this Saturday at 2:45 p.m. Pacific time. Yes, we will be live tweeting it (I'm @freshwidow). I have honed and polished my slide show but sometimes it is just down to whether I've consumed exactly the right amount of coffee...

Yes, we will wake up early and "listen in" on the Grief panel at BlogHer that morning. I have proposed the hashtag @BHGrief, we'll see if they decide to change it at 9:05 a.m.

Yes, there will be margaritas. OK, maybe we will read the #BlogHer10 tweets ex post facto.

Yes, I am so excited to press the flesh (don't get too excited, Sarah!) with so many friends from this blog, from Twitter, and from Facebook.

I am reminded of my last "career trip," to BlogHer last year almost an equal adventure. More this time -- because I'm speaking and (shhhh!) I have NEVER BEEN TO THE WEST COAST.

Like many milestones, like a wedding, I now see that the journey begins the day AFTER the milestone -- like all rites of passage, it can go neither "well" nor "poorly," because it's all about getting through and then getting up the next morning.

And no matter how tired I am, I will always be fresh.

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Ham and Eggs, or, Why I just wrote my will

There’s an old joke, really more of half a joke, that we used to use when referring to having our child. Someone would ask Gavin how the birth had been, and I’d chime in with, “It was lovely, but it was like ham and eggs… the chicken (pointing at Gavin) is involved, but the PIG is COMMITTED.”

(Gotta tell you though, when Stalin said, “You can't make an omelet without breaking a few eggs,” he didn’t mean that the chickens would get off [or over] easy, either.)

Labor pains weren’t the half of it, really, when you think about the many years we spent living in the limbo of infertility treatment. Despite my body being directly involved, I was definitely the pig. I took dozens of shots in my pink thighs. I volunteered my breasts till they were raw. I gave it up and delivered. And I ate a LOT.

In the end, it was he who died (though we didn’t get any meat out of it, except perhaps for stories like this one).

So I wonder if I was getting him back by some odd, post-mortem, self-flagellating math when I didn’t take care of my own will for FOUR MORE YEARS. Gavin had received plenty of credit for our baby without doing the work, and damn it if I was going to commit to one more thing. It was his body doing the fighting, and therefore his decisions about treatment and endpoints, but I resisted wherever I could. It’s impossible to pull your own life out of the action, isn’t it?

So it was easy, after he died, to relish my role as the chicken for a little while. I told everyone how important it was to have an advanced health care directive and a will, and to talk about death with your loved ones. But I manifested that unique alchemy or oscillation between bulletproof and broken that a widow often does. As a single Mom, who would I tell my last wishes to, anyway?

I’ve been married a year and a half now and we still haven’t had “the talk.” I really AM chicken.

But I just made up my will. You can tell it’s mine because it has a juice ring on the front page. I had it witnessed at a bruncheon I hosted for local widowed parents about two months or so after preparing it using some cheap internet product. The bona fides might or might not be solid, but my conscience is clear. At least I’ve done one of the jobs I think you all should do.

And I remember that despite the pig’s great commitment, his dying for our breakfast, we do end up eating the chicken, too. It’s just later in the day, for the most part.

Parts is parts, right?


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