The Hillhouse

The Journey of a Mother and Son

Hope Burning March 3, 2015

I’m trying to imagine how everything might look right now if I knew I were dying.

Tonight the moon is out, and from every window in my house I see a gentle, rural scene. Beyond my kitchen window to the north I can see a thinly wooded forest through which the moonlight passes, leaving slender shadows in the sparkling snow. To the right of that there is a deep swath of open yard which stretches up and over the rise; it’s defined at the far end by a stone wall and row of trees beyond which lies another large field. I can also see the lights from my neighbor’s homes in the distance, and it feels nice to know they’re not right upon us, but still, just close enough. I like knowing that. Through my living room window to the east I see the ridge of the horizon, and lights twinkle from the hills beyond the Hudson River. There are people living out there, under those twinkling lights, and I like knowing this, too.

It’s a modest house for sure, but it’s cozy, it’s comfortable, and I think that most of the people in this world would be happy to call this place home. For just a second or two I’m able to conjure the feeling that I’m looking at it for one of the very last times, and for however many times I’ve so deeply missed the homes I’ve lived in before this one, for however many times I’ve lamented ending up here, alone at the end of a long, country driveway – now, in this moment, this place feels like the most important place of my whole life. Tonight, this place is my only home. It’s where I want to be. And until recently, it’s where I’ve always felt safe from the world.

Less than an hour ago I heard that a friend, who’d discovered her breast cancer in what she’d thought to be its earliest stages, had learned through her recent surgery that it was worse than previously thought. The cancer had spread to her lymph nodes. A diagnosis I’ve heard many, many times in the past decade of my life… It doesn’t always end the same way, but it’s a long, difficult road to travel no matter the severity of the disease, and I don’t envy those who’ve had no choice but to take up the charge. I’ve seen friends fight tenacious cancers, some triumphing after incredibly brave battles, some succumbing after equally courageous campaigns. And in the end, who in hell knows why some people make it, and some people don’t? No one, of course, deserves to get cancer. And no one deserves to die of it either. But when the patient is either the parent of a young family or a practitioner of the healing arts, it somehow seems all the more unacceptable.

Last night, Elihu and I had dinner with a neighbor, who brought up the subject of another town resident who was, although putting up a kick-ass fight, dealing with a lethal cancer. His mother had died of it, and he himself hadn’t even discovered it until it until quite recently – when it was already stage four. He was a relatively young guy, and with three young children he had a lot to live for, but still, it didn’t look good. Truthfully, it looked bad. But in spite of how imminent his death appeared, my heart lightened to hear a new tone in our hostess’s voice as she offered rather brightly that of course he still had a chance. (Funny how one latches on to hope – however small or unlikely it promises to manifest.) I myself had only learned of his diagnosis a few weeks back – after, I’d seen him in a local liquor store and given him some grief about his newly launched vodka business. He’d cited some local lore on his product label about which I questioned his firsthand experience. But he sure showed me; he’d known more about it than I’d thought he would, and even had the class to acquiesce about a point on which he may have put something of a romantic spin for the sake of salesmanship.

After my needless challenge of his new product line had concluded, he cheerfully asked after Elihu, remembering his charismatic performance at the Greenfield Elementary Talent Show a few years back. Our kids had ridden the bus together for a few years, and Elihu, whether this man knew it or not, had fairly idolized his namesake son. Maybe I should have told him? I wasn’t sure how relevant it was at this point. Just as well I didn’t go on…. In hindsight, I so wished I’d have stopped babbling sooner, and just played it a bit cooler. I had remembered to congratulate him on the new business, but still, I guess I just feel as if I’d been a bit foolish, a bit trivial spewing all that ridiculous banter to fill the space. I know it’s the common, everyday stuff that matters – it’s banter mostly that keeps the world turning – I just wish I’d been a little less enthusiastic in my pursuit of it. After all, there was some serious courage on display right in front of my eyes, and here I was chattering on as if it was a day like any other. Of course it was a day like any other – and when you’re sick, don’t you wish for your life to go one all around you as if it truly were business as usual? But then clearly, it is not just another day. A confusing mix of realities.

Both my parents have had cancer. My cousin’s been undergoing repeated rounds of chemo over the past several years in an effort to keep her colon cancer at bay. Our grandmother died of colon cancer. I myself, for the second time in as many years, have pre-cancerous polyps growing inside of me which need to be removed. The office gal at the gastroenterology group is nonplussed at my status; it’ll be months yet before I can even get in for a first appointment, much less get the things lopped off. “They’re slow growing” the gal on the other end of the phone tells me in a near monotone, the subtext being “We know what we’re doing. Don’t freak out here.” In past years it’s been another thing to tick of the to-do list, this year it’s something that begins to really frighten me. I mean, what if? What’s to say it shouldn’t be me too? There is no fucking justice in the assignment of disease. I am just as human as the dad down the road with the young family, or my friend and acupuncturist with the breast cancer. I am just as unsafe as they are from a surprise diagnosis. Nothing saved my old college beau from dying of Leukemia before he turned forty, or my dear musician friend dying from esophageal cancer shortly after that, or my old childhood pal passing from lung cancer before fifty. None of those jovial, loving and spirited young men deserved to go, nor did their loved ones deserve to lose them. From my earth-bound perspective these good souls deserved none of the shitty hands they were dealt.

In spite of the cheery demeanor that goes out before me in the world, I live my life in an ever-present, low-grade state of fear. And lately, I’m more keenly aware of just why. Making my way through life feels like I’m walking through a field of land mines. And now that I’m past that fifty mark, people in my life have begun to leave at an increasing rate. Right and left I hear stories, I learn that ‘so-and-so is gone’, or ‘didn’t I hear that she had only months to live?’ or ‘it was so sudden, and then he was gone’… It almost doesn’t shake me quite so much – at least not as much as it did say a couple of years ago. And also because many of my friends who have died have been out of my immediate, day-to-day world, their deaths have seemed somewhat unreal and distant. But the frightening reality of death has settled in all around me now, and I find that I’m even giving my eleven year old son simple directives should it be learned that I too have something possibly terminal. I’m not sure how comprehensive Medicaid is, but I am surely at its mercy. If a treatment isn’t covered, it isn’t going to happen. I feel a growing pressure to archive the work of my life, to get it organized clearly – so clearly that someone other than me could go through the mementos and understand their context and stories. I want my footprint to be tidy and identifiable, even if I know it will only eventually recede back into the rolling sea.

We passed a house today that I’ve always liked; it was a small cottage nestled into the side of a mountain, part of it was made of local stone, the rest a deep gray clapboard with white trim and tidy black shutters. Many were the daydreams I’d had about what life might look like if I myself lived there… Today I saw that it had recently suffered a fire. Gutted. It was black with soot, and dusted with the flurries that had started to fall again. I know most people’s first hope would have been that the residents got out safe. Somehow, I always take that as a given. Instead, my first thought is usually I hope they were able to save a few favorite things. But this time, after a moment’s more thought on the matter, I changed my mind. No, that wasn’t what I hoped for this time. This time I really did hope that they’d made it out safely, and hadn’t dawdled on account of the memento box.

My arthritic hands have started to make playing the piano painful; they’re beginning to twist in different directions and ache all day long. My vanity had already given up, but this new physical challenge of simply playing – of doing the only thing in the world that I’m truly qualified to do – is breaking my heart. It’s making me fear for the shape my fingers will be in ten years from now if they continue at this rate. But then, I remember my friends and what they face. And as with everything in life, when the road gets harder than you could have ever imagined in your worst dreams, the unimportant stuff somehow falls away. It’s not about living so much pain-free as it is about just plain living. It’s not so much about grabbing a box of mementos on the way out. It’s about steeling yourself, gathering your courage and getting the hell out of harm’s way.

Tonight I’ll be thinking of my friends – all of those who face deeply frightening health challenges at this time – and I’ll be sending them as much love as the airwaves can hold. I’m surprised to find I’m not quite out of hope yet, in fact I’m turning up the dial now, and I’m emitting as much hope out into the world as best I can… I pray they receive it, and like some sort of beacon, it will help them find their way out of the burning house in time…

 

Three Days Left October 30, 2014

A young woman will end her life this weekend. Her name is Brittany, and I’m incredibly grateful to her.

Some of my friends know this about me – and certainly my son knows it better than anyone – that if I am ever faced with a terminal illness, I intend to make the choice whether to let the disease take me – or whether I will choose to take my own life first. Likely, I’d opt to leave before my quality of life declined to such a point that it was creating unnecessary discomfort and distress – in me or my loved ones. I’ve been adamant about this for a long time now, and after being present for my father’s death last year, I began to think more deeply on the subject. Caught up as I’ve been – as we all are – in the micro details of my ongoing life, I hadn’t thought much on the subject for a while. Until last week.

I very seldom pick up a People Magazine, but when I saw the headline, I had no choice. I had to know this woman, to know her name, have her picture in my mind, I had to know her story… Yes, it was about her, but it also involved those who loved her, too. I couldn’t avoid the big question – what about her mother? I am a mother, and I cannot fathom what it would be to live this nightmare; to know that you must support your child in their choice to end their own life. Such an excruciating paradox; the height of love’s expression: to let your child go as an act of compassion. How, I wondered, even long after I’d read and re-read the article, was this all going to work? I myself now have the experience of holding a family member’s hand as he died, but that was far different. It was his time. We were ready. How in hell can any of her family or dear friends be ready for such a thing? It’s beyond my comprehension. It’s beyond the comprehension of us as a society. For now, at least. It’s my great hope that it will not always be.

Maybe Brittany has begun a more public conversation about the choice to die issue than ever before, and maybe this time it’ll pick up momentum and blossom into a new awareness across our culture. Maybe, just maybe, this is the beginning of a new era. Daily our planet wrestles with a ‘two steps forward, one step back’ dance over social constructs that in my opinion, should be old news and long in place by now. I feel as if we should be beyond all this pettiness by now and be done messing around with other people’s lives and trying to prevent them from making the choices they need to make, but in reality, I suppose we’re still only at the bottom few rungs of the ladder.

But even if it’s a slow progress, we are moving upward, and thanks to my hero Brittany, it’s front-page conversation at the moment. Because Brittany is a beautiful, intelligent, articulate and young woman, she makes the issue relatable and relevant to a whole new population for whom this subject might previously have been as irrelevant as discussions on Medicare benefits. I mean it’s one thing if we’re talking about your grandma who’s suffering from Alzheimer’s after eighty good years, but it sheds an entirely new light on things when you’re discussing death by choice with a twenty-something.

There’s nothing more to be said now. Only three days are left in which her mother may hear her voice, in which her husband may hold her hand, in which her friends may sit by her side. How will Brittany’s innermost thoughts change in the final hours? What on earth is that experience like? Has fear gone completely – or does it ebb and flow? How brave she is to go where few have gone, and from where none can report back. But truthfully, I’m not so worried about her. She’ll be fine. It’s those she leaves behind that have a longer and harder road ahead. Strength to all of you. I send you my love and most supportive energy. There are thousands of us thinking of your family right now, and if we could share the burden of your heartbreak, we would. And thank you so very much, Brittany. I pray for your smooth and peaceful transition. Hope to meet you on the other side someday.

Brittany ended her life yesterday, November 1st, 2014, with her family and loved ones beside her.