Neighbors of Fire

“We are amazing beings,
Geryon is thinking. We are neighbors of fire.
And now time is rushing towards them
where they stand side by side with arms touching, immortality on their faces,
night at their back.” (Ann Carson, Autobiography of Red)

The above quote is from the short novel in verse on which I wrote my Master’s thesis (and it’s a lovely, lovely book — and I recommend it to everyone). When I was first diagnosed back in late March, these words came to me almost immediately — and again, this week, I heard them over and over again in my head.

9:00pm Sunday finds my roommates and me parking on the edge of World’s End and the wind just high enough that we wish we had brought warmer clothes. We grabbed the beers we had brought from home (and anyone who knows me knows I don’t really drink beer, so that alone proves what a special occasion this was) and set out under an almost full moon and into the woods. World’s End is a state park in Hingham and I have still never been there in the daytime. What I know about it is limited to night light and the barely visible silhouettes of deers against the backdrop of the water, the city, and the sky.

I spent a lot of time outside at night growing up. And so, Sunday night, my head suffused with anxiety and panic, I took to the road and ended up on the edge of a small peninsula that sits in the Massachusetts Bay. The wide path that slid into the trees was almost invisible 10 feet in, but the moon kept catching the shadows of branches and wildlife on our right, where a field opened up to the bay. As I walked, I kept glancing to the meadows and watching for the reflection of light on the water. The deer we passed didn’t move. It was unbelievably quiet.

We walked for about 30 minutes with beers in hand and finally reached an end of the park, which opens up — we think — to the water and Boston. We were far enough from the city that we could see both its lights and the stars, and because my roommates and I don’t believe in coincidences, we lay on our backs and stared at the sky. “I haven’t seen a shooting star yet,” Lauren remarked about 10 minutes in. And despite that, the sky was dotted with hundreds of stars — no Milky Way to be seen but enough constellations to keep us busy for a time. I remembered the last time I watched for shooting stars and compared the weather then to the weather now. Two different points on a map — one balmy and warm, and then here — brisk and chill. I am not a New England girl and I wonder if feeling always a little out of place up here lent itself to the independent solidity I felt Sunday night lying on my back in the grass in Hingham, Massachusetts. I was not quite comfortable and not quite warm, but solid and present.

I bridge that evening to yesterday, when I went to the hospital early in the morning (9am is early for me) to sit with a friend from college who’s partner is in her last days of stage iv ovarian. My infusion wasn’t until 3pm and so I sat with her and her partner’s family in the hospital room through the afternoon. When she greeted me as I walked off the elevator on the 7th floor of the Connors Center we both started crying immediately. I had no words other than, to her, “I am so, so sorry. This is such crap. This is so awful,” and, to me, this is coming.

I know what is coming. I do not fear death.

For the first hour we sat in the family waiting room and slid so naturally and so quickly between laughing and crying that I forgot the difference between them. We were surrounded by sticky pastries and coffee, family members of other in-patients, and bags of clothes and shampoo. She had been there for a few days, dutifully watching over her partner, insisting on the right kind of medication to keep her comfortable, holding her hand when she wakes up confused and scared. I doubt she had slept more more hours than days had passed. She had already spent months being a repository for pain, anger, sadness, and fear and here she was again — those experiences condensed and magnified. (It is frightening how similar the initial days after diagnoses and the final days are.) She remembered how, when on 15 mg of incredibly intense steroids that fuel the most primal of rages at the beginning of chemo this summer, her partner had thrown a cell phone toward her head (but purposely missed) and her retelling found us both doubled over in laughter. “Strong women respond with rage,” she remarked, smiling, and I nodded. My own reaction to cancer was — is, in large part, rage. It was more comforting than I know how to communicate to hear the similarities between my own experience in the  handful of insane months that comes after diagnosis and their own — all the anger, all the sadness, all the laughter. All the rough, angry, tense moments that have no reconciliation, no explanation beyond “well, that’s what cancer is.”

This is cancer, I thought. Meals of breakfast pastries from Au Bon Pain, greasy hair and tired eyes, charging cell phones in waiting rooms, and standing stoic and afraid, all at once, without choice. Because there is no choice.

A series of gritty, small details that barely contain the alien, out of body fear and sadness that hovers in between waiting rooms, in the hallways, in the eyes of those who walk out of loved one’s rooms. There are no words — or rather, there are words, but their excess mocks reality. All of this is more textured, nuanced, and subtle than language is capable of expressing.

While we sat in the hospital room later, I watched as my friend responded to every move, every breath, every shift with a steadiness and grace I felt blessed to be around. Her partner’s parents and sister too — human beings who are not impossibly together but moving through each moment with a quiet deliberation that can grow only from the depths of solid, lasting love. This is not an easy path. It is not a steady path. It is a path that is more than difficult, more than unhappy, for everyone. But it is also one that, from the right angles, has its moments of joy. And I wonder if the deepest joy is not to be found in the worst of it: that this family, having already gone through the worst and now facing it again in a more awful form, with fear but without backing away from that fear, is helping someone die. I looked at my friend at one point and said to her, “You are doing one of the greatest things that humans are capable of. You are helping someone die well.”

We are capable of an extraordinary love, I thought.

At one moment her partner’s sister turned to me after her partner had woken up uncomfortable and the nurses had sedated her back to sleep and said in a voice noted by what I can only call bewilderment “You’re very brave.” I started crying immediately and shook my head no as I went to hug her. I don’t know if it’s bravery or strength that maintains us in these moments. I think closer to the truth is that time keeps passing, and we do not leave. Everything passes, everything begins and ends, sadness passes, anger passes, happiness passes, but we are still there. Or — our love is still there.

We are capable of extraordinary love.

And now, I remember standing at the edge of World’s End at the end of our night on Sunday — close to 11, Boston faint in the distance and the stars somehow brighter but farther overhead — three ordinary women forced into extraordinary circumstances, wide awake, cold, bonded by time: We are amazing beings. I think of all the times I have snapped at my roommates or friends in the unmoored, thick rage of illness that permeates through every moment and every occasion, or cried for hours with my head buried in their arms, unsure of what I’m sad about but knowing it is something dark and deeply rooted, or laughed too loud or too long because I’m desperate to have a moment take me away from the reminders of my lost hair and port scar — and received, on each and every occasion, nothing but love. And, somehow the same, the image I have of my friend, her partner’s mother and sister curled together on the cot next to her partner’s bed at the hospital, waiting and patient, frightened and full of love.

We stand, at the edge of the path, looking over the bay and under the sky, fearful and hurt in the horrifying reality of everyday, but unmoving — We are neighbors of fire

And now time is rushing towards them
where they stand side by side with arms touching, immortality on their faces,
night at their back.


What Can We Do?

[Giant Fucking Disclaimer: For those of you who think you’ve done or said something awkward or insensitive to me while I’ve been sick, this post is not about you. Lord knows I’ve made more mistakes than everyone put together, and those in glass houses cannot throw stones. Instead, I wrote this post for the countless people who have asked of me the question that stands as its title. It’s for all of us, then, since we’ve all had this question. At least I have.]

When I was diagnosed the first time, in October 2010, I cried three times.

Once when my boyfriend at the time got home the day of my diagnosis and the two of us sat on our bed, silent with our heads together.

Second the day before my mastectomy, sitting in my old car in BC’s parking lot with one of my best friends.

Third the day I got my implant inflated as much as possible in order to stretch my skin to prepare it for radiation. My plastic surgeon left the room and, curious, I peaked in the mirror, only to find a version of my left side that more resembled Dolly Parton than me.

To draw some perpendicular, or even parallel, line between these moments and my reaction to my second diagnosis would be at best disillusioned. Fear has never been something I’ve felt, really. I don’t get afraid easily, but the thing that most recalls, or is the consequence for, that fact now is that I don’t have the vocabulary for the rushing sound and almost physical sensation that overtakes your sense of self when you get this kind of diagnosis. I feel like Alice in Wonderland when she’s falling down the rabbit hole, watching only once familiar objects fly by because they are the ones staying still. Far too often I feel unmoored and alone. And I don’t know how to stop. Or, more accurately — there is no way to stop.

This isn’t fear, I sense. I’m not stressed, I’m not even nervous. Anxiety, frustration, tension, sadness — none of these seem at all relevant. I am horrified. At best. And that’s pretty much how I act much of the time.

Horror isn’t pretty, and if I still feel this amplified and magnified version of it almost six months in, the first three seem far more daunting in retrospect. As I’ve mentioned here before, the psychiatrist I met with in the first days after my diagnosis warned me about those first three months. “Watch out for them,” she told me. “Your only job will be not to commit suicide. Everything will feel awful, and terribly frightening, and overwhelming almost all the time. If you have panic attacks, if you’re too afraid to move, if you cry all the time, that’s okay. Just bear down and do what you have to to get through the first three months.”

Well, fuck.

But recently I’ve been asked by a number of people, “What can I best do in this situation?” More and more friends of mine who have family members in with similar diagnoses approach me for the best way to act, the best things to say, what to avoid. I’m happy to help, and there’s a wealth of literature online that addresses these concerns, especially a series of incredibly funny blog posts and message board threads about the most awful and hilarious things people say to cancer patients with the absolute best of intentions. Like about that bus that’s going around killing everyone. Or how you’ll be okay because you’re tough. Or how you don’t look sick.

But what I think is unsaid sometimes, and what I want to address here, is what those first three months are like and how to even approach navigating them. I’ve referred to them, and danced around them while seeming to hit them on the head, but there’s a series of things I’ve learned about moving a cancer patient through that worst time that are worth sharing. Not that I know how to do this, because I really, really don’t. But that’s where I want to start: that nobody can possibly know how to do this, especially those of us who are sick.

And this is where those three times I cried after my first diagnosis come in handy. Non-terminal, non-stage iv cancer is so, endlessly more manageable. It has a recurrence risk (duh), but the default is “we can cure you,” — and, a good portion of the time, it’s true. You’re told you’re going to have what amounts to pneumonia for 9 months to a year, and some surgeries, but that you can walk out of it. Each time I cried in that context was at a landmark, something that signaled another loss or another major change. But this time around I just cried. I cycled between crying out of this depth I didn’t know existed and feeling nothing, just entirely numb, old, gone.

That sort of oscillation is difficult to capture. I think I had moments in the first three months that resembled happiness, but at best they were fleeting, incidental, and superficial. So: I was never happy. I couldn’t comprehend of what happiness would look like, or feel like. I either felt nothing — which I tried to mask as happiness or at least contentment most of the time — or this thick, primal horror. And worst, I felt inhuman. Nothing I did felt real, even though I would have done anything — and tried so, so much — to feel real, or normal, or even moderately okay again. I felt alone, isolated from everything, unable to connect to anyone. I didn’t know how to talk about being sick without initiating this deep discomfort for everyone involved, but nothing else was on my mind. I had weird reactions to the most mundane, everyday, and even once enjoyable things: I would cry thinking how temporary they were, and then I would cry more — and with a strange, disembodied anger — because they had nothing to do with being sick, which was the center, the absolute of my life.

Panic no longer seems the word. Again: I don’t have the vocabulary.

And what the hell was everyone — anyone — around me supposed to do? None of us knew how to handle this — least of all me. I may have done the best I could, and many people may praise me for my grace, my focus, my strength, my spirit, but I didn’t know what else to do. And while those traits of mine do absolutely exist, they are almost exclusively layers that bed down the reality of having cancer, how it makes me feel, what it does to me. And if my best guess is this unrooted stab in the dark, how could anyone else know what to do.

Well, in the two and a half months since those three months ended, I’ve figured out some of it. I think.

Being close to someone with cancer is endlessly difficult, but there’s one crucial, awful truth that will both alleviate you of a lot of the uncertainty and fear and double down on those emotions as well. I’ve mentioned this to my closest friends, and I’ve been reluctant to post it here, since it seems coarse, callous, depressing, narcissistic, and honestly insensitive. But: after I die, the rest of you will still be here. And you’ll be okay. And you can figure out how to be okay then. But, until then, we gotta figure me out first.

First, a disclaimer: This isn’t to say that those around the cancer patient don’t need to take absolute, careful care of themselves during this time. If you don’t watch out for and tend to your own wellbeing and welfare, there’s no way you can help someone who’s been diagnosed with a terminal disease — literally no way. But you have the responsibility to do that independently of the patient and their wellbeing. Because there’s almost nothing worse than asking a cancer patient to reassure you that you will be okay, that everything will be okay, after she dies. Because, for her, that’s the biggest piece of bullshit.

But, even if you know how to manage yourself and your happiness, what can you do for the cancer patient’s? Because no one is responsible for or should be dependent on another’s happiness. And though cancer patients are in a special context — they need more support, more reassurance, more company than normal folk (and by all means give it to them or ensure that you help them find it as much as they need, as much as you can) — they still need to stand on their own two feet.

Early on in my diagnosis, a friend of the family asked me what she could do for a young woman in her office who just received a similar stage iv breast cancer diagnosis. I told her something I still stand by, that I think transcends office relationships and can be applied to every relationship you may have with a terminal cancer patient.

Treat them like normal, except for when they need to be a cancer patient. Then, let them be a cancer patient, and remove all obstacles to that reality.

This is a fine, and difficult line not to cross or fuck up, but I know it’s not impossible. A number of my closest friends who have been in the trenches with me during this have achieved it with poignancy, grace, and persistence. The best kind of description I can muster is a series of moments they’ve given me. Walking this line has a lot of bizarre, complicated, awful meanings. It means commiserating with the awful, intense, irrational body pain I’m in all the time, and agreeing with me that it sucks, but making fun of me when I laugh at its persistence when I’m on the wall or on a horse. It means acknowledging that there’s no possible way you can imagine or understand my exhaustion and pain, but you can still help me make sure that that singularity doesn’t make me feel alone. It means laughing at the ridiculously absurdity of my treatment length or my nerves the night before, every fucking time. It means never arguing with me about my treatment, how I feel because of treatment, or what treatment does to me, but rather just admitting that yeah, there’s no real fix, and yeah, it sucks — it’s always there and it sucks. It means teasing me mercilessly at chemo for my squeamishness about the giant needle that goes into my port and my insistence on having tator tots from the cafeteria at almost any time of day on threat of death by dismemberment. It means showing up at my apartment at 10:30 at night on a Thursday with pretzel m&ms and a homemade Ports Rock tshirt. It means looking me in the eye and, when I need it, admitting that I’ll die, soon, young, and that no amount of good days can push that off or diminish it.

I guess, what this adds up to, if I look at it closely enough, or from the right angle, is this: the thing you can do for a cancer patient is never refuse her reality. In your life post diagnosis, your hold on reality becomes almost unbelievably, almost comically, tenuous. And this is because reality has shifted under your feet as do tectonic plates that should never move — suddenly, massively, permanently. And, for so many people who do their absolute best to make cancer patients feel better by cheering them up, or try to fix their mood, their best attempts end up denying the cancer patient’s horrifying, crushing, all pervasive, unending, already horribly isolating reality.

And, three months in: Things do get better. They really do improve, get more quiet. Laughing seems less alien. Dancing comes back. The constant internal howling and screaming smooths to a dull roar that you can almost pick out words from. But that reality never entirely disappears, and so acknowledging it, staring at it, knowing it, is I think the best you can do. Sometimes that feels overwhelming, painful, so fucking unfair. But it’s still there. There it is.

And then, when you feel that reality, when you know it’s there (but that still, somehow, even your best attempts only begin to approach it), you can be proud you’re still standing. And that everyone who’s best for you during all this massive bullshit is standing there with you.