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Wednesday, August 19, 2015

More Required Reading

From Deep Lane, by Mark Doty.

what you can't restore, inscribe.
what you can't restore, inscribe.
what you can't restore, inscribe.

Someone assign me to write that 50 times on the blackboard, please.

Sunday, August 16, 2015

Status: It's Complicated

This weekend, the New York Times posted this fascinating story on The New Old Age blog.

The piece, titled "A Grief So Deep It Won't Die," by Paula Span, deals with the concept of "complicated grief," a state characterized by years of sadness after a loss, and was recently given something of a footnote in the latest DSM.

It struck me this week, a difficult one on the heels of several other difficult ones. I had a check up with my oncologist, and since I rated my distress on the distress-thermometer as a 6, that meant we had to talk about it. She asked if I wanted to see the hospital psychiatrist again.

"I'm not depressed," I said to her. "I'm sad."

"Sadness is depression," she said.

It was an off-the-cuff remark, I know she doesn't truly equate sadness with depression, but it was so illustrative of the cancer patient experience. The whole, "You're not over it yet? There's something wrong with you" - thing. But it's also, "Hey, you've been through something really shitty, and I want to protect you from that the only way I know how." But it's already happened. It always will have happened.

She wants to help -- she doesn't want me to be sad -- but the relief isn't one that I want. After a rough few months on Effexor last fall, I'm really not eager to go on an antidepressant again.

Nearly seven years ago, I cared for Matt through a life-threatening illness, tending his surgical wounds, watched deeply poisonous substances drip into his blood, sat in the waiting room while he was shot with radiation beams. In the last three years, that same series of things happened to me.

Ad so it feels decidedly unlike a disorder for me to cry, feel an ache, to need time alone to lick those many wounds. Even though it's three years later.

(I know that's a slippery slope, and that depression does know how to cloak itself in the "things are terrible, it's a lie to feel anything other than misery." I know, and I am watching.)

But I have so often felt frustrated how little others will let me be sad.

Example: We put in an offer on a perfectly imperfect little house in the mountains a few weeks ago. I moved in in my mind the moment I saw it. I imagined planting wisteria (and once you mentally plant wisteria it's all over). There turned out to be multiple bids, and though ours was the highest, we still didn't get it.

And when I expressed disappointment, I was repeatedly hushed and clucked at: "That wasn't the right one," and "The house you're meant to have is out there." Chin up, and all that. Please, I wanted to say. Just let me feel what I'm feeling. Just let me.

I'm ashamed it admit that to avoid this in daily life I hide behind "I'm fine." To avoid my feelings being negated by others, I negate them myself. That same old song and dance.

Matt keeps trying to buy me ice cream and mango juice. Pancho licks my face when I cry. But know that I have to feel it all.* Not because pain is somehow instructive or "makes you stronger," (ugh) or a better person. Pain does none of those things. I have to feel it because it's fucking true.

And all of that is not to say leave me alone. It's the opposite in fact. It's, I need you now. Let's have a hug or smile or just hold me in your heart with good intention. Let's have an I hear you girl. Let's all talk to someone. Someones. Let's all get the help we need. Let's share all our complicated grief.

I think all grief is complicated, by the way.

*But only if it is (really) real. Sadness can become depression. I'm lucky, in that I generally know by the quality of my thoughts what sort they are. When I feel the little beginnings of the rip tide start to tug, I take notice. Am I realy an awful, selfish person, or did I just make a mistake?

Friday, August 14, 2015

C'est moi

Here's me and Matt in a video we did about immunotherapy for the Cancer Research Institute, and The Answer to Cancer, where I'm the Online Community Manager. Please excuse how red and shiny I am. xo

Wednesday, August 5, 2015


Greetings from Rhinebeck. I'm at the Omega Institute this week, particpating in a writing workshop but getting very little writing done. 

There are lots of reasons for this but a main one is that I've been pretty deeply sad these last couple of weeks. Since my last post, exactly. The panic fog cleared and left me with raw sadness. Crying in the bathroom in work sadness. Going to bed at 7:30 sadness. Nausea-inducing sadness. About nothing and about everything.

Grieving, mourning. This was posed to me by both my regular therapist, and the mind-body person I saw here at Omega. 

During meditation yesterday, I felt a hot, searing pain my left chest. It was specific and precise, a pain I have not felt in three years. It was what I felt post-mastectomy. (PS it was three years since my surgery on Sunday.)

I feel angry about this sadness. I want this to be over. It's what others expect, now that I look normal and only go to the doctor a few times a year rather than every other day, but also I am exhausted.

The mind-body therapist I saw today suggested that this m ay be happening now because it's safe to finally feel this. That perhaps I have been waiting.

Funny about that pain yesterday. I remember feeling afraid, when a week or so after the mastectomy the most intense pain began to ebb. I clung to it. Because that pain could fill up my mind so I didn't have to think about anything else but feeling it, managing it. I could absorb myself in how long it had been since my last painkiller. But once it started to leave me, I knew something else would rush into the void, and it wouldn't be so easily dispatched with opioids and muscle relaxants.

And so here we are. I know there is no timeline for this, no magic expiration date for trauma. But what, exactly, the fuck am I supposed to do now? Take a month off work because I had cancer three years ago? How do I sit with something that will never be okay?

Sunday, July 19, 2015

Broken Brain

So I was on line for a movie tonight, and realized I was tachycardic. (Yes, I have a heart-rate monitor app on my phone. Doesn't everyone?) I felt faint and weird when I arrived at the mall (90+ degree days in Jersey = mall + movies). I ate an enormous meal in the food court, guzzled water, but nothing could stop that fuzzy head/chest thing, which was likely due to: 1) surprise pregnancy 2) rare encephalitis I'd just been reading about or 3) ???. And then I realized I was having a full blown panic attack, and I didn't even know it.

Me: Oh anxiety, you old so and so. You can still trick me, after all these years. How do you keep it fresh?
Anxiety: I am you, therefore I know all.

Anxiety's been a real bitch lately. I don't just mean the panic attacks at the doctor's office, or the woozy feeling I get when I smell alcohol wipes outside a hospital setting (but not inside, oddly). No, this A-level fuckery.

So, origin story. Pre-cancer, I was in Rome, then Paris, then Rome again, writing and eating for six weeks. I worked on a new novel, and decided to apply for a Fulbright. I wanted to travel, but with my family this time. I came home, snuggled with Matt and Pancho, and went to Maine to install an art exhibit I had been working on for months. It looked great! Everyone was excited for the opening. I was going to get to meet Martha Stewart at the cocktail party! Ahhh!

And then, and then. The spot of blood, the occult test (less fun than it sounds), the ultrasound, the appointment with the breast surgeon. She said, probably just a little papilloma, but let's do a mammogram to be sure. I had to miss Martha for the appointment, but I still made it to the opening and see everyone's reactions to the show. We traveled around Maine a bit, and I snapped this photo with the boy in Ogunquit.

And then came home, and had said mammogram. Had said mammograms -- dozens of images ended up being taken that day. The specks spattered across, like someone had merely sneezed on the film, those were troubling. So biopsy, let's do it now. Hmm. Cell phone number of the radiologist. Call if you have questions. I didn't know what meant. I went out into the darkest hardest rain I've ever seen, and even though it was a summer storm, it was cold, and I was soaked, and there were no cabs, and I didn't go back to work and just went home.

The next photo in my library is this, that Matt took after I came out of mt first of many surgeries. Double mastectomy. And then all the rest.

Suffice it to say, I was happy up to the moment everything came down. Very happy -- the happiest I'd been in my adult life. So now my brain knows, or has decided, that when I am happy that means destruction looms. And so I am not happy, I am scared. But then again, I am not happy anymore, so crisis averted, I guess.

We looked at houses upstate this weekend, and we found one that we love. It's tiny and funny and affordable. On the drive home we talked about the garden we'd plant, and the frolicking that Pancho would do and all the sleeping too. I thought about reading and listening to the rain fall and soaking in the cacophony is there only if you're quiet enough to listen.

And then as we sped closer to home I saw car wrecks in my mind. Once there I felt funny and restless, poking at a freckle (or is it a mole?) newly formed on my lip. Fussing with the new vacuum cleaner (is it already broken?) while thinking about seizures. What if a tree falls on us in the new little house?

What will be the thing that comes for me this time, I wonder? Can I predict it? Or will half the sear be the shock of it?

So pounding Ativan in the mall, listening to a meditation app before the movie starts, I try to unwind this. I can't get a real breathe, it seems, and that only aggravates my speeding heart. The lights go down, and finally I am safe because I am no longer happy.

Pancho's face is greyer now, and it will be 3 years on Thursday.