Sea Legs

A year and a month and three days. On March 26th, 2013, my life began its swan dive so rapidly and unexpectedly that I lost the sensation of standing still. I’ve often described that being stage iv is like being Alice, down the rabbit hole, only the objects and people that populate your life and hover around you while you fall pass too quickly to even register. When asked if I’m ever afraid, I say that “sometimes, if I think about it too closely, it feels like I’m falling downhill, toward a cliff, too fast and too out of control to stop.” Falling is such a common metaphor for crisis or disaster that it seems cliche to use at times, but I’ve yet to find a better explanation for the nervous and airy sensation that wraps itself around my chest when it dawns on me what’s really going on.

A year a month and three days. A lot of time for those realizations.

I don’t know if right now is what slowing down feels like, but I realized, in those first few days past a year, that something had changed. Kate and I talked about whether making it this far was losing a year or gaining a year. I think it’s gaining a year. From where I stand now, I’m healthy, I have my energy and focus back after whole brain radiation, and I feel more grounded. But that ground is still constantly moving and shifting (healthy, I guess, should be in quotation marks, but that’s a discussion for another day), trying to trick me into relaxing and taking a break while it continues to shake. I stay on my feet. I think, at least, I might be running now.

I wouldn’t say I’m proud of my disease but it’s carved away a lot excess fear, self doubt, and anxiety. I said to Kai recently that I have an absurd amount of self confidence, and I do. In the first few months following my diagnosis, I realized that I had to believe in my own ability to weather this storm. Others could believe in me too, but if I didn’t invest in my own confidence it wouldn’t matter if the entire world were on my side. If I didn’t push myself to rescue the artifacts of my life, reach out and grab them from the walls as I fell past, then I would be left without a life, without a sense of self or purpose. I would have finished the job that cancer started — stealing me away.

I’m in academia, and academics have a tendency to position themselves against popular opinion and popular culture — and very often for good reason. So I often find myself surrounded by a wealth of literature that rages against the blinding effects of the pink ribbon and optimistic cancer/survivor narratives that obscure the messier, more depressing, more humbling experiences of late stage, terminal disease. I also find myself, in the midst of these voices, struggling for air. Part of me feels as if I must be missing something — that my proclivity for the popular means that I’m somehow less insightful, my thinking less nuanced, my conclusions less informed and intellectual — but the other part of me wants to scream “Shut up, I GET IT.”

I GET IT. I’ve had several major organs fail. I’ve been so sick from treatment that I had to sleep in the bathroom, many nights in a row. I’ve lost so much weight that my bones told their own story of starvation when I wore a tee shirt or a dress. I’ve had 8 surgeries in one year and come home with open wounds and tubes draining the excess liquid from my incisions. I’ve done 6 straight months of a chemo famous for pain so piercing you don’t sleep at night. I’ve lost my hair twice in the middle of New England winters and discovered a newfound respect for those who choose to go bald and woven woolen hats. I’ve faced, head on with eyes open, my own mortality so many times I’m no longer shocked by its existence.

So I get it. I know how isolating illness is; how the constant bouts of feeling sick, and tired, and in pain can seem endless and punishing. I know what’s coming for me on the other end of this. I know how it feels to watch the rest of the world move according to the laws of physics, and gravity, and motion while you sit, locked in a prison but forced to interact with those outside. And sometimes those outside don’t understand — they mean well but tell you “you’ll beat this” or “you’re doing great” when all you really need is a sympathetic ear, silence, and a hug. I think this is where a lot of the anti-pink ribbon voices emerge. They’re an appeal for emotional validation or, if I’m being more honest, an appeal to those who dismiss your reality to kindly shut the fuck up.

But there are also those who listen, who don’t tell you you’re going to be fine, who stand on the sidelines with you, point at your mortality and say “yep, there it is, the asshole.” When I feel alone and sick and depressed and anxious it’s them I surround myself with. More importantly, it’s them to whom I owe my life — it’s them to whom I owe the willingness and energy to keep thinking, keep moving, keep a smile on my face. Most importantly, it’s for them and because of them that I smile. So while I get it — cancer treatment and the side effects of the disease are mind numbing, painful, frightening — I don’t buy into it. If you’re stage iv, there will come a moment when cancer takes everything; I remember Charlene looking at me with a fear in her eyes that I don’t know we have the word for in English, and saying: “I don’t want to die from cancer. I would rather die from anything else, but I don’t want to die from cancer.” I get that fear. Cancer is not a noble death. It is an ugly, often prolonged, painful death. It is a death I do not want and yet, eventually, I must take.

So, in the meantime, I’m running. Sometime in the last year, month, and three days I found my legs again. Periodically I think I lose them, but I’m lucky enough to be surrounded by people who are willing to sidle up next to me, point, and quietly say, “Right there, Kiara. They’re under you, moving just like normal.”

And they’re right, in more ways than they know. A lot of the time, I am moving just like normal. I’m still working toward finishing my dissertation, still horseback riding and working at my barn, still rock climbing, still writing in my spare time. All of these activities are me — they confirm my existence and the person I am in ways that cancer can’t. Even in their truncated forms, when I’m too sick or too tired to invest myself as much as I want to, these artifacts give me energy and purpose — a life outside of cancer. Even when it’s difficult. Especially when it’s difficult. I think it’s the reason that one year, one month, and three days after a terminal diagnosis, I’m doing pretty good.

I guess that’s my version of the cancer narrative. More pink ribbon than not, more optimistic and forward moving than not. If you are stuck with this disease, count your blessings and actively pursue them. Don’t let cancer sideline your life. As I’ve written in another forum, cancer does plenty of its own ass kicking, so you better do your own as well. Do it because the alternative is far more scary and far more permanent and far more overwhelming. Do it for yourself, but also do it for the women and men who can’t, whose diseases took their lives. Do it because as humans, we have the ability to be patient, and confident, and strong — and do it because one day, you’ll look down, and see your legs. They were always there anyway.

[For Ches, who we will always love, and always miss.]

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The Color of Mistakes

Soon, it will be a year since I was diagnosed stage iv.

I think March 28th is the  date, but I can’t remember exactly (and I actually prefer it that way). In the last year, life has been a weird combination of fast forward and pause. It’s often been a challenge, both to live every normal day (and live normal every day) with a terminal illness and to manage the darker times when they come around. But it’s not impossible. If anything, the experience has taught me how to weather and navigate almost any storm, or at least be confident in the fact that I can figure the worst ones out.

But the constant barrage of the good, the bad, and the ugly *would* have been impossible were it not for the phenomenal support network around me, comprised of my family and closest friends. Although I often feel alone — I am the only one of my support network who has to actually live with this bullshit growing in my body — I never feel lonely. I’m always, at most, a phone call away from someone I can trust, confide in, cry with — and, most importantly, someone who will bring me back around to laughter.

And that’s something I tell others — those who are diagnosed, my friends and family, really anyone who will listen. When you or someone you love has a serious or long term illness, tell those around you. Though it’s scary to break the news — even sometimes terrifying to say the dreaded words aloud — it’s necessary. The only way you can gather a support network is to ask for that network, put out feelers. And the only way that support network can work is if they know what you’re facing each day. Only once you or someone you’ve set up to act as a proxy have divulged the context and situation you live in, how it affects your everyday life, how it makes you feel and changes the way you act and interact — only then can those around you truly be of help. And the more you let people know what you need and what’s going on, the more ready they can be to offer appropriate and effective help when you need it.

This outlook is easy enough to take with an illness like cancer, especially stage iv. It’s pretty physically demanding and so pretty obvious when you need help — and pretty hard to ignore. In other words, it’s damn near impossible to hide — something I’ve never tried to do and never want to do, ever. And this is actually something I’ve been praised with doing — I’ve been told how reassuring, helpful, and demystifying it is to hear me talk openly (and I am open about every facet of having cancer — ask me anything!) about my illness, how it fits into my life, and what kind of response I need from others at different phases of treatment. The response has been overwhelmingly positive — everyone close to me has stood up and supported me, in part because my transparency gives them encouragement to do so.

But what about those illnesses that are, for the most part, easier to hide or easier to physically deny — illnesses that our culture has taught us to keep secret and be ashamed of? I’m thinking specifically of mental illness. Everything I wrote above about communicating about a disease like cancer I believe is true of mental illness as well, but until I got diagnosed the second time I couldn’t put my finger on how to defend mental illness as something about which we as a society need to be more open, accepting, and understanding.

But living with cancer over the last year it’s dawned on me: no one would expect me to be ashamed or shy about be sick — it’s a disease, something that went wrong in my body that I had no control over. No one would expect me to just ignore it or suck it up on a hard day when I wasn’t feeling well — when getting out of bed felt like a chore. No one would think differently or condescendingly of me or be embarrassed by me if I didn’t do so well in public because I was suffering. Any response other than kindness, caring, and love to any of these — and related — situations would be unacceptable; a negative, unsupportive, or shaming response would be selfish, lacking in compassion, cruel, and unfair.

Now, read the above paragraph, but instead of thinking about how I have cancer, think about the fact that I’m manic depressive (which I am, by the way). Everything still stands true.

We need to stop thinking about mental illness as something that’s “just in your head” — which, admittedly, is hard, because physiologically it originates and occurs in your head. We need to stop thinking about illness of any kind as something that’s “not okay.” Because while it’s horrifying, and destabilizing, and painful, and unrelenting, and often uncontrollable, it is okay; or, in other words, it is human. Mental illness is a disease that needs proper treatment — just like cancer, just like any other illness. It is a disease that requires compassionate care, patience, and understanding. In the many, many forms it takes, it’s demanding and relentless — again, like stage iv cancer — and puts pressure on those who suffer and those who love the sufferer. But I think situations that put pressure on us — no, demand of us — to be more compassionate than everyday life asks, to be more altruistic, to be more selfless, patient, to have wider perspectives and consider things from others’ points of view — situations that demand us to be more human — are ultimately the only ones worth living for.

And something amazing happens when people stop being ashamed of who they are — even and especially when who they are isn’t perfect — and instead start accepting themselves ‘as is’. When people are comfortable in their own skins — as the French say, je suis bien dans ma peau — they start loving themselves and taking care of themselves more effectively. To put it bluntly: they learn that it’s okay to get the help they need. And they learn to ask for it and seek it out. As Kai tells me all the time, when I feel guilty about needing so much when I’m sick, “Everybody needs a little help sometimes.”

Everybody.

So don’t be ashamed. Stand up and ask for help from those you trust, or at least tell them what you’re struggling with so that they can be there for you when it’s hard. If they love you — if they are indeed compassionate, loving, learning human beings — they will rise to the occasion. They will, even in the really rough, uncomfortable, painful, shocking moments, stand at your side and guide you through the darkness. They will accept you and love you and help you — and never turn you away.

I dedicate this entry to Kate, who taught me it was okay; to Kai, who showed me the way; and to Mum — for everything.

Lessons

I read a short article today about a young mother and her experience with a son who has Tay-Sachs. It resonated in some strange ways. Unlike Emily Rapp, the young mother, my parents have seen me achieve and experience quite a bit, and will continue to do so for a number of years more. Yet, like Emily Rapp, they will ultimately have to bury me and experience life without me — a job no parent should ever be assigned. And even though I am sorry — terribly, and tremendously — I have not told them so because I do not know how.

But what echoed in my chest the most from the article was the sense of time and purpose Rapp so eloquently writes about:

Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.

Rapp’s determination — that she and others like her — are parenting “for the humanity implicit in the act itself” is, I think, parallel to the most significant and elegant lesson I’ve learned in the past nine months. Too often, our society, our culture, our friends, and even our families train us — as we train them, and ourselves, in a vicious feedback loop — that success and achievement are measurable in financial terms and superficial goalposts. Spend your time making money and climbing whatever career-ladder most suits you, pursue some artificial end that has been entirely manufactured and maintained by that career track itself.

Getting sick has refused those ideas.

Instead, the lesson is this: exist for others. Choose a career that will benefit the lives of those around you, those in communities that need the help of others, those you love. Don’t exist for money or your own achievement — at the end of the day, those imperatives will leave you feeling without identity and empty. Do something that improves the lives of others, whoever those others may be. For years, I wanted to be a college professor, and that career would have put me in a position to help students better themselves through education, critical thinking, careful reasoning. I wanted to work, ideally, at a public university or community college, where I imagined I could help students who would most benefit from the lessons I know I can teach.

But with a shortened lifespan I realized that that dream may not be achievable in the time I had left. And as much as I wanted to be — and still want to be — a college professor, as much as I love academics and the niche I have carved out for myself in that world, there isn’t the time to do it meaningfully. To do it in a way that benefits others. To do it in a way that means something beyond myself and my own achievement.

So, as I’ve mentioned before, I’m going to finish my dissertation (a project I always intended to see through to the end, regardless of other circumstances) in Spring of 2015 and, in Fall 2015, hopefully enroll in an MDiv program and begin studying to become a Unitarian minister.

I’ll miss research. I’ll miss teaching (tremendously). But, as a minister, I can reach more people in less time. I’ll be in a position where I can positively affect the lives of as many people as possible in a short lifespan with the skills and talents I have.

I’m no saint. I don’t claim to have life right, or to have figured it out. I fall on my face with, honestly, a frightening regularity. I make mistakes — constantly — but I try to own up to those mistakes and learn from them. And if those things are true about me, I can use those experiences and that knowledge to reach out to people and pass along what I’ve learned — which, hopefully, will help someone along the way. Or at least try my best to do so.

I wish I could have learned this lesson in any other way. I wish it hadn’t taken a terminal diagnosis to teach me that our time is short and so we must experience the moment as fully and honestly as possible — and help others do the same. But life is unfair, and uneven, and scary, and often these things happen for no reason. As Rapp admits, a child’s terminal diagnosis reveals the worst to parents: “The long truth about their children, about themselves: that none of it is forever.”

And in the face of that uncertainty, that terrible, terrible truth, I wonder if the only thing we can do is ease the challenges we encounter on that path that we are all on, together.

On the Right Side of the Race

I suppose I’m way overdue for this post. But whole brain radiation shakes your brain’s ability to think and process clearly, so I didn’t bother writing while the side effects were still looming large. I’m still a little fuzzy, so this may be a short and less than well written post. Bear with me.

That’s right! I got brain tumors, as most people who know me already know. First of all, this is breast cancer in my brain, not brain cancer. About a dozen small spots, the largest at 1cm. Nothing in places that are too serious. We found them because I was getting headaches that turned out not to be connected (sound familiar?) and they showed up on the subsequent MRI.

Brain tumors sound scary, but they’re not. (Okay, they are.) They don’t change my prognosis, largely because liver tumors are technically more deadly. However, brain tumors are harder to treat because of the blood brain barrier, which prevents large molecule chemos and neoadjuvants (like taxol, herceptin, and pertuzumab) from entering the brain. At the same time, once you have cancer in the brain, there’s a good chance that your BBB is disrupted enough that other things can start to cross too. And there’s been some indication that being on herceptin for a period of time before, or during, and after the discovery of brain tumors can help other kinds of treatment. So it’s a mixed bag.

HER-2+ breast cancer brain tumors also behave much differently than other brain tumors. When other kinds of breast cancer, or lung cancer, metastasizes to the brain, it’s usually fatal within 6 months because it doesn’t respond to most treatment. But once again, I’m lucky — HER-2+ brain tumors respond to treatment — like whole brain radiation, focal radiation (gamma knife surgery), and chemos that are smaller molecule and do cross the BBB — very, very well. Most women see stabilization after WBR for a year or more, for instance, and many live with brain tumors for more than 5 years.

But seriously — my brain??? I asked my oncologist, when I first saw her after the diagnosis, “So, is there anywhere else breast cancer tends to go I have to worry about now, or have we covered all the major bases?” She responded, “Well, it can go anywhere, but the only other closed circuit system that’s difficult to treat is the testicles, and you don’t have those, so I don’t’ think we have to worry about that.” So there is a silver lining.

In the first few days after finding my brain tumors, I felt like I was oscillating between absurdity and panic. I think Kate said it best the morning we first went into the hospital to meet with the radiation oncology team and begin WBR. “Well, it’s ten in the morning and I’ve already cried over a toilet and looked at a scan of the tumors on my best friend’s brain. TGIF!” The night before, Kate, Will, Kai, and I sat in her apartment and the four of us figured out laughing was better than crying and steered our night in that direction. Brain tumors. The persistent little fucker.

We won’t know how well the WBR worked until late January, as you have to wait almost 2 months after radiation for your brain swelling to go down and the scans to come back clear enough to read. We’re guessing they worked well. They should have worked well.

The other side of this coin is that my body scans in early December were totally clean — still no evidence of disease. This is excellent news for two reasons. First, it means the herceptin and pertuzumab are working without chemo, which gestures toward more time off heavy treatment; second, it means that, if we can get the brain tumors under control now, there will be very little chance of more cancer getting into my brain or new tumors developing because there will be no cancer in my body to move into my brain. So I’ve got that going for me.

Nonetheless, my brain is my control center and having it under attack is weird. For the first time since I was diagnosed, one night I found myself saying: “Why is my body trying to kill me?” It may not change my diagnosis but it feels different — feels like more of a crucial assault than the other organ metastasis. My brain is me — more than my lungs, or liver, or bones — and so it’s tempting to wonder how I, or this part of me, let this happen. What gate did my brain leave open for the cancer to come waltzing through? Where are my brain’s guardians who are supposed to make sure no intruders enter the battlefield? “Blood brain barrier,” I want to shout, “you have ONE JOB. Seriously??”

But that’s not how it works, and I know it. Just like cancer isn’t clever and isn’t looking for new places to go, laughing maniacally as it plants seeds of destruction across my body, my body isn’t clever either. They both act and react as the biological organisms they are, with the primary (and really, sole) aim of staying alive.

I guess it’s just a race to the finish then. Who can stay alive the longest. At least we’re helping the right side.

Miracle

Today I attended the funeral of one of my closest friends.

I’m not sure how to conceive of this, or work it into my parameters of thought. She died on Monday. And we knew it was coming — or, it would be a lie to say it was a surprise. She also had stage iv breast cancer, though a more aggressive and less treatable kind than I have. We were diagnosed initially — she stage ii and me stage iii — around the same time, and then went into remission together, then were rediagnosed stage iv within a few months of one another. Those experiences were strange enough to strike me as remarkable, and in ways we understood each other and the fear that nested in our bones because of our diagnoses more intimately than should be possible.

Cancer is not pretty; at the end, it is especially not pretty. It is not a noble or quiet death. It is loud, and persistent, and disfiguring. It leaves no room for mistakes — no moments from which you can turn your head and look back to something less formidable, or less frightening. It is more than unforgiving, it is relentless. You cannot hide from its eventuality. There is no cure for stage iv, and every time someone asks me “well, what if they find a cure” I want to shout as loud as I can, as long as I can. Stage iv is in your blood, and if you’re lucky they can hold it off for long stretches of good time before it decides to come out of hiding and rebrand your body with its fierce and irrefutable madness.

You do not hide. She did not hide. I do not hide; I will not hide. I model my life and my perspective after her — staring fear and loss and grief in the face, unblinking.

I say, in the wake of her light and her footsteps soft but steady on our horizons, “Be bold, and mighty forces will come to your aid.”

The first time we spoke at length was after her mastectomy but before mine; both hopeful, both face toward the end of treatment with joy. When I began chemo after this second, less hopeful diagnosis, she turned up at my first treatment with yogurt covered raisins, 4 People magazines, and a pink Hope ring I wear every day — and will always. I remember the day she showed up for chemo at Dana, bald, after hanging onto her hair long after I gave up and shaved mine off. I remember when her cancer shifted silently from dangerous to devastating, and she crawled into my hospital bed during my infusion and whispered in my ear “It’s so much worse than we thought” and all I could say in response was a feeble, helpless “Okay, okay, okay.” I remember the day in late summer she came out to my barn and rode my horse through the fields; the image of her and her husband walking hand in hand through the orchard pressed onto the folds of my skin, the weight of my muscles, the depth of my bones. I remember the day I was sitting in a coffee shop in Cambridge and she called me to tell me she had brain mets. I couldn’t figure out how to cry that day and ended up in Portsmouth, New Hampshire, trying to force myself to feel something, anything at all.

I decided about a month ago I’m going to study for an M.Div and become a Unitarian minister after completing my PhD in Spring 2015 and I’m doing it because of her. I had the chance to tell her this last week and through everything being thrown at her in those moments the look of joy on her face was unmistakable and I will carry it with me forever.

Her mother said today: “We kept praying for a miracle but silly us, Charlene was the miracle.”

I have no words for this.

Today I attended her funeral.

 

And today we stood, unmoored in the fierce and unfettered fear of loss, a community netted by one presence who shook the world so, so deeply, so tectonically, with her love and determination, whose smile and laughter and support rooted so strongly into the core of every friend she had that when the priest mentioned her loss I said, only half in whisper, “I did not lose her, we did not lose her” — we have not lost her, she will never be lost —

And I wonder if the only bulwark we can fashion against this kind of terminal is that love, is the trust that loss is not permanent because the physical manifestation of our bodies is only part of the gift we are given, or that we have to give. That we can walk through the highest fires of fear and pain with those we love, because of love, because we are given the opportunities to love and to support and to stand next to one another, full of fear and apprehension and hurt but unmoving. That we are not born strong enough or steady enough to manage this — what ever the fuck this is, this horrible, heavy version of dark — but if every moment is an opportunity to make it to the next we should honor that opportunity and press ourselves onward anyway, knowing that the pursuit itself shapes us into better forms. That what is more weighted and meaningful is the hope and the love and the joy we bring to one another, to remember in our moments of fear or panic or loss or pain, to hold close when nothing else good is close; that we have more to give than our presences —

but god does it hurt when those pass.

You are the miracle, Charlene. This is for you. This will always be for you.

Stones

I’m sitting in the hospital awaiting an infusion. These are strange words to write for two reasons. I haven’t been here in three weeks. I’ve got no evidence of disease.

I feel too healthy to be here.

On October 3rd I got my latest set of scans back and they were clean, save some holes in my bones where tumors once were. No cancer, no new or old sites of disease. No evidence of disease at all. This is the best news we could hope for — and yet, it changes almost nothing. In the past couple weeks, I’ve been carefully walking through the thorny tangle that NED represents. It means we beat back the cancer I had, shrunk the tumors and froze them in place. It means the taxol worked — may continue to work in the future, should I need to return to it — that my body responds well to chemo. It means we bought me up to a year off heavy treatment, punctured only by antibody infusions every three weeks to keep the cancer at bay. It means there’s still cancer in my body, invisible, slowly defrosting from its chemo freeze and preparing to move. It means I’m ahead in the race, for now, but not for good. Never for good.

It means the tumors will regrow. The cancer will come back.

I have said this before: I do not fear death.

This morning, while waiting to go into my first appointment, I was scanning facebook and came across the following that a friend had posted: “Be brave. Be honest. Be kind.” I said these words almost verbatim last night — my version a slightly modified Goethe quote: “Be honest, be bold, and mighty forces will come to your aid.” I live by these words. I promised myself long ago I would never turn back — I would never let fear halt my headlong run forward toward reality. When I made this promise, I did not know how sharply those words would resonate when I was diagnosed stage iv, when suddenly fear was something almost palpable, endless. When fear took on a shape of its own, no longer abstract or momentary but specific, stubborn, permanent.

My restaging to NED does not change my terminal status, but it also does not change my perspective. It may grant me a break from chemo — which is incredible for itself — but it does not grant me the luxury to turn my head and avert my eyes from the reality that stands, heavy and dark in front of me. Rather, so much of my sanity rests on the recognition of that reality, my willingness to be honest to it. If I can stare this disease in the face, run headlong toward its bitter persistence, I can chase off the cloud of fear and doubt that hovers around it. I think, oddly enough, of the groundglass that manifested as a dark shadow around my original tumor in 2010. We took a scalpel to it, cut through that haze to more clearly see the shape and space underneath.

Be honest. Be bold.

I do not know where my insistence toward reality comes from, or what fuels my willingness to grapple with it even now. I am not especially brave, or strong, or insightful. I wonder how it would feel to lean on NED as a crutch, to let it carry me far from the dark mass I’ve been running toward, give that shape the space to cloud over again, disappear behind a mist that resembles reality but does not touch it. I wonder but I will not let that happen. Instead, I continue to move, stubborn and steady, toward that shadow, challenging it to dispel the cloud and let me see underneath. Each moment gives me the opportunity to move forward again, to reach the next moment. Each step is closer to a reality I cannot anticipate or imagine but know I want to feel the contours of.

And so I do not fear this. I do not fear death. Death is always a reality, always a force, even in these good days. But I wonder if — no, I know, I can feel — the real we are granted in life is more palpable and heavy than death. The opportunity to move forward lends us strength each time we choose to take it. I think of a night Kate and I sat on the edge of the Res at one in the morning and leaned our heads together, facing the water. “No breaks. No time off.” We vowed no denial, no hand waving, no distractions from reality. We knew the path we etched in our minds would be difficult and painful. But we also knew that it would be suffused with light, with the texture and force of something we could only see and feel beneath our feet if we ran toward what we feared. What we fear now. What we know, we remember, is still coming.

I know — I can feel, because I believe true knowledge is lodged in our bodies, in the core of ourselves nested near our hearts, hovering above our diaphragms — that only on the path to that fear can we find reality, the dense and weighted joy of life. I wonder if fear and joy do not occupy the same space, if they do not live next to one another. If to know joy, you must know, recognize, and face fear. That running toward fear is necessary to know a joy that is not easy or fleeting, but instead more recalls an old and rough stone, sitting quiet and solid in the bed of a lake. Darkened with the time that has passed, full of its own force. Present. Real. Permanent.

Be bold, and mighty forces will come to your aid.

I feel that force is joy. I feel that force is love.

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.