Roy’s Blog: Let’s Dance

Here’s another inspired piece of writing by Roy about love and dancing and him and me on his blog.

Roy and Susan smiling

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On Curiosity

The theme this month at the Unitarian Church (a non-doctrinal, inter-faith community with a long history) I go to is curiosity. I like this: curiosity sounds like such a positive, life-affirming, even playful state of being to me. It’s also essential to learning. Curiosity demands that we arrive with openness, with presence, and that we leave what we think we already know aside and be prepared for something new, maybe even something unexpected. Maybe even something wondrous. Curiosity demands that we be engaged in the moment, attending to whatever presents itself.

This type of curiosity is akin to listening, and I think true listening is something that we can never do too much of. When a friend visits and I ask how she is, I am being curious in a good way: I want to know her more deeply. I am ready to listen. I do my best to leave aside what I might think I already know about her to be truly open to her story.

Alice in Wonderland

Yesterday I brought a book to the two appointments I had at two different hospitals: Joan Halifax’s Being with Dying, which had been recommended to me by a couple of people. I always appreciate Buddhist teachings, and in these days of uncertain future I need especially to hone my practice of being in the moment. In her introduction, Halifax writes of “not-knowing.” This tenet, she says, “invites us to give up fixed ideas about others and ourselves and to open the spontaneous mind of the beginner.” This sounds a lot like the state of curiosity to me. Halifax notes that

Our attitude of openness and inclusiveness is essential as a basis for working with the dying, death, caring, and grieving. The only way to develop openness to situations as they are is by practicing the partners of presence and acceptance. We give our best to experience everything as totally as we can, not withdrawing from the vividness of any experience, no matter how scary it seems initially.

Openness, presence, acceptance. These are what we need to live fully in the moment. We can bring this sort of curiosity to our everyday lives. We can also bring it to our contemplation of death.

curious cat cartoon

In my last post I wrote about the role of imagination in confronting our mortality. While curiosity seems like another good strategy against the avoidance and fear of death, it might, as my new assistant Lauren (who is also my son’s very smart and lovely girlfriend) suggests, actually be a first step towards imagining. She notes that “we’re all curious about death (to varying degrees, of course), so we’re already partway there. I guess it’s about not letting the fear get in the way of exploring that curiosity.”

So which aspects of death are you perhaps already curious about? And which are uncomfortable for you? Would it be possible to let yourself be curious about those instead?

Maybe it’s time to let your morbid curiosity loose!

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On Imagining

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My journal from 2016, which I’m still writing in today. I like the play on the word decomposition.

Last October (2017) I was sitting in a café with Roy and took out my journal to write. I didn’t feel like writing. The cafe was too crowded and busy, not a space for that kind of inward focus. So while I waited for my hot chocolate I leafed idly back through the pages to the year before, October 2016, before I knew I was ill. I read that at the time I had been bothered by a strange, persistent lump and swelling in my calf, which I now realise was a blood clot, a symptom of this sarcoma that was already growing unsuspected in my uterus. But that day in 2016 I believed I was still healthy and was writing about what to do with my day, as I often did. This is what I wrote:

I will have to deal with organizing stuff here a bit first. Still working at chaos reduction, putting my affairs in order. I don’t want to leave a mess for others. Not that my death is necessarily imminent, but I don’t want to be scrambling with that if it becomes so. I had this thought the other day that a cancer diagnosis –the fatal kind– just means you have a better idea than most (or than before) when and how you’re going to die. I also had a spontaneous bliss rush as I lay in bed wondering what was wrong with my leg and suddenly thought it could be cancer. That was weird, but it felt peaceful, like a gift, to feel that way. Not bitter or fearful at all. I do hope that when my time comes I will be in that sort of space. Filled with light and acceptance, gentle love. I need to remind myself to find that place every day. Hard to be there every moment, but more reminding myself should help.

Some people are surprised that I have been able to accept my terminal diagnosis so immediately and peacefully. That 2016 journal entry, I think, explains why in part. I was prepared. I had considered the possibility and processed it. I had imagined it, something I did often enough. And I had received that strange gift of peaceful bliss as an unexpected result of thinking about it. I have no way of explaining that moment, other than to see it as a gift. I don’t know where the gift came from exactly, though I usually just think of it as a gift from the universe. There were other unexpected gifts of that kind over the months leading to my diagnosis, and I was grateful for them too. One was a simple vision of profound connection beyond the limits of this life –to all life, to the entire universe– as I looked upon the trees in my garden from my window; this was also accompanied by a sense of bliss.

When the real-life diagnosis came, I actually was immediately filled by light and acceptance and love.

Life in Death by Rebecca Louise Law

Life in Death, installation by Rebecca Louise Law

I can’t demand such gifts, but I can certainly prepare myself for anything in life by imagining it. Roy noted recently that people often say to him that they can’t imagine how he can do this. Some even declare that they couldn’t do what he is doing. This is nonsense, of course. We can all get through far more than we think we can, especially when we don’t have the choice. But many people banish the thought of disaster or misfortune. Many are superstitious in ways they don’t even realise, believing that the very thought of death or any unwanted thing will bring about the reality. (Would that our thoughts were that powerful and could bring forth all we desire instead of what we fear!) This means not imagining these things ahead of time. And thus being unprepared.

Imagining death or disaster or any other dreaded thing might seem like a morbid thing to do, but for me it was quite useful for bringing a sense of peace and preparedness rather than anxiety. (If you already suffer from serious anxiety I wouldn’t recommend this, since you are probably already over-imagining things going wrong. A different approach is probably needed if you are anxious and get stuck on the negative side of imagining rather than crossing into favourable possibilities as resolutions. Cognitive behavioural therapy (CBT) has been shown to be effective in helping change those patterns for those suffering from anxiety. You can ask my boyfriend Roy about that if you want; he’s over at his blog, The Long Goodbye.)

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From Rebecca Louise Law’s Flora & Fauna Editions

When worried about something, I used to let my imagination loose and imagine the most dreaded outcomes in dramatic detail. I recall one night as a youth when my parents had driven out to a distant party in the country. As the night grew late and they still weren’t home, I worried and started to imagine the worst. Much of this was imagining how I would handle it. How would I answer the phone call or the police knocking on the door? How would I respond when I went to identify the bodies? How would I embark on my life as a young-adult orphan? How would I mourn this loss? I imagined a variety of reactions, including terrible grief and, eventually, acceptance. Thankfully nothing bad happened in the end, but I exercised my faculties for responding to tragedy, a sort of practice run. I believe I would have been less shocked with a bad outcome and better able to respond as a result. My reactions to lesser disasters throughout my life indicate that this has worked to some degree. The bad things I hadn’t imagined ahead of time were more difficult to process.

Jane Eyre cover

The edition of Jane Eyre I read as a child and still cherish today.

As for my own mortality, I have been contemplating that since childhood. I read a lot as a child, and the literature I read never shied away from death. In fact, most of the protagonists were orphaned. And most stories presented at least one death in detail, often with a death-bed scene and a funeral. The internal grieving process was also part of the story, since novels can present a character’s thoughts and feelings. I read Jane Eyre as a child, and though I don’t recall the reading experience now, I’m sure I was much impressed by the gentle young Helen’s peaceful acceptance of her own imminent death. (I re-read Jane Eyre last summer when I decided to revisit my most beloved books in the time I had left.) The Anne of Green Gables series, another childhood favourite, also presented death as a common  part of life that came to both young and old. So though there were no deaths near me in my actual childhood, death was always there in my imaginary life and reading.

I never forgot death was waiting for me and everyone else, including those I loved.

Later, as a circumstantially depressed and suicidal adolescent, I became obsessed with dying. I spent countless hours imagining and hoping for my death. Though desperately wanting to be dead, I would not actually kill myself since I couldn’t bear to inflict such grief on my mother—part of having a well-developed imagination meant I also had plenty of empathy. I consoled myself with courting death in other ways. I tried to think of ways to die “accidentally” or contract a fatal illness. Since I was still young and romantic, this pastime was rich with vivid detail and dramatic story lines. So I was secretly thrilled

Susan in dark days

Me, in the dark days of my youth. I had even painted the walls of my room black!

when I was actually diagnosed with tuberculosis at that time—an illness with so much literary history! How many characters in the dark Russian stories I loved had wasted away from consumption! But alas, my illness turned out to be just pneumonia, which I did my best to exacerbate with plenty of smoking and other self-destructive behaviour. Nevertheless, my sturdy good health asserted itself. But since hoping for death is the antithesis of fearing death, this stage of my life made me quite comfortable with most aspects of dying and death, an ease I have maintained since. Fortunately my suicidal depression also resolved when I finally found a path in the world that seemed right for me and I went back to college. The fear of death only returned when I became a new mother and was worried about dying and leaving my baby motherless and unloved, believing nobody could love him the way I did. But that fear also dissipated as my children grew up and didn’t need me so much.

Now I am back to viewing death as simply the end point of the glorious and mysterious gift of life. It’s perfectly normal, natural, and necessary, if unwanted (though some deaths, especially the violent ones, are anything but normal and natural). Every living being in the world must die, and countless people (over 100 billion, it is estimated here, have died before us since the beginning of humanity). I always want to say something silly, like “And they’re fine,” or even sillier, “And they survived.” Obviously they did not in a physical sense, but in some way I believe they are fine, as our deaths have always been part of the plan. Why would there be anything to fear in that? I know I need to go and leave my place to another. And imagine what wonderful things that next person might do in the world!

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It is also estimated that there are 100 billion galaxies in the universe. (A NASA Hubble Space Telescope compilation photograph)

Death being the end of this life doesn’t exclude the possibility of an afterlife or continued connection to this world in some form. There is still room for whatever belief or faith one may choose. I don’t have proof of another dimension, which also means I can’t claim whatever I’ve imagined as the one true afterlife (perhaps with rules for inclusion and exclusion, like the Christian idea of heaven), but I do like to believe in one. If there is consolation in that belief, that is a good and worthwhile thing. As humans, we are free to believe without evidence and even against evidence (as my philosopher friend Miriam has explored in her book, Believing Against the Evidence: Agency and the Ethics of Belief, and other academic works). Yet we don’t want to use a belief in an afterlife as a way to avoid confronting our mortality.

Especially for those who don’t believe in an afterlife, a negative attitude –fear or dread or denial– about death can be debilitating. People often tell me of their own or their dying loved ones’ fears, depression, or denial of death, and how these have prevented both the dying and the bereaved from finding peace in the end. These feelings, while common and an expected part of the wide range of emotions in the dying experience, are a problem when we get stuck in them and when they keep us from acknowledging and talking about death with loved ones. I had a friend who was so depressed by his terminal diagnosis that he refused all visitors in his last months, and years later it still bothers me that I couldn’t see him. Imagine how those closer to him must have felt! The people who share these experiences with me are troubled rather than consoled by their final memories of a loved one’s death. It doesn’t have to be this way, but it takes some courage and determination to make sure the needed conversations happen despite the fears. And we don’t have to wait for a terminal diagnosis to have those conversations, since death can come at any time, in any way—as we can all well imagine!

(The Gashlycrumb Tinies alphabet book presents Edward Gorey’s darkly whimsical imaginings of odd ways to die. It was one of my son’s childhood favourites. He even made up a new O page for his own name!)

gashlycrumbtinies

I’ve known people who have never admitted to those closest to them that they were dying, despite all evidence to the contrary. And their loved ones never brought it up or challenged them to acknowledge it either. That meant they never got to say goodbye, never made peace with what were in some cases complicated relationships. And I know others who have left it to the very last moment, like one who ended up with forty visitors in one day, all in a rush to say their goodbyes once he finally went into a palliative care home just days before dying. My own boyfriend spent decades under the silent shadow of his father’s death, unacknowledged as imminent in the young family until it had happened, then never spoken of again until they were all adults. So many families miss the chance to express their love and gratitude and find peace in that final letting go, and that loss can lead to painful regret.

This avoidance is understandable in a culture that is constantly feeding our fear of death with endless horrific stories and awful images of murdered bodies on the news, in TV shows and movies. These are not balanced by positive or peaceful images of death, and so our view of death is skewed toward the horrific. Yet as many of us become numb to the dreadful imagery of those distant deaths, we also push real death away when it comes too close in our own lives.

And many experience painful personal loss without the guidance to make peace with it. In our secular society too few of us have exposure to spiritual discussions of death and its broader meaning in our lives. There is little wonder why our culture’s fear and avoidance of death has grown so huge and unmanageable.

Yet finding peace in death is an invaluable gift available to all of us.

snoopy cartoon

My own path to this peace is of course unique to me (and I certainly don’t recommend suicidal depression as part of the way there), but there is a path for each of us, I am convinced. It can begin with simply making the choice to stop avoiding the thought of death. And if afraid or already traumatised by loss, to simply choose to face it, and stay with it for a while, rather than habitually turning away in fear or aversion or pain.

Roy, who lives with anxiety, says his CBT therapist’s advice was to

accept my anxiety and worry, to invite it in for a sit-down. Sit with it for a while, without trying to process it. Just sit with it. The idea being that recognising it, accepting it, seeing what it does to my body, will reduce its negative power over me.

Roy notes that it takes some strength to be vulnerable and accept those uncomfortable feelings. But that discomfort decreases with practice and opens space to examine the source of anxiety or fear.

Then death can be gently explored in the imagination, its varied sides and manifestations discovered. There is so much to our mortality if we look beyond the initial horror and dread we may have learned to feel. I do believe a steady gaze upon death can allow it to reveal its many gifts. These gifts can include a deep serenity, a solid sense of purpose in life, profound gratitude, and other sources of meaning and true happiness. If we learn to receive those gifts, then when death comes upon us or those we love, we will be prepared and freed from fear. We will also learn much about how to live well in the meantime. I know I am grateful for all I have learned so far!

S is for Susan

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Need a Reminder?

It’s not hard to forget our mortality with all the things that keep us busy and distracted all day. If you want a reminder that you will die, there’s now an app for that! Here’s a discussion of the WeCroak app on CBC’s Tapestry. I think this title beats mine for morbidity!

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April Update

I’ve realised again that some friends are wondering how I am. My sense of time has never been very good, and it’s even stranger now. So I am amazed that it is already three months, a quarter of a year, since my hospital stay over the Christmas holidays.

I always struggle to answer that question of how I’m doing. I guess the best response is that I have been stable over these three months since I started my second regimen of palliative chemo, which has stopped the internal bleeding that made me so severely anemic in late December. I haven’t had any significant new symptoms, but the tumours and the trouble they cause haven’t gone away either. That trouble is manageable, however, with good pain medication and reduced or modified activity. So I don’t have much to complain about—which means I have much to be grateful for!

I only have one cycle (two treatments) of chemo left, so I will be done April 19. I have no idea what will happen without the chemo to keep my disease progression at bay. I had a few months of stability after my first chemo regimen ended last summer, but I can’t count on that happening again. I know from past experience that when this sarcoma is growing and spreading, it grows fast. There might be another chemo option to try when that happens, but the chance of it being effective is small. I was very lucky with the chemo I’m on now. So all I can do is take each day as the gift it is and hope for a long delay in aggressive disease progression.

The chemo treatments themselves haven’t been too bad in side effects. Physically, it’s never worse than a mild hangover. I usually need to rest more for a few days, and there have been a few minor digestive issues and side effects. Mild edema and the steroids I’m on have led to weight gain and that moon-face effect, but that’s not as bad as the extreme edema (30 pounds of fluid!) I endured with last summer’s chemo. But I don’t like not looking like myself. I didn’t mind being bald, but bald doesn’t look so good with chipmunk cheeks. Now I look like Casper, the friendly ghost!

Casper

The steroids also affect my mood, making me more energetic physically but also irritable and anti-social. That means most of the time I prefer to be alone, getting practical things done. I think the chemo affects my mood as well. Last summer I didn’t complete all six cycles of chemo because it seemed to be causing mild depression. (I wasn’t on steroids then.) This time I am not quite depressed, but I have been feeling rather dull. I can’t tell if that’s from the steroids or the chemo. I was in excellent spirits in February, but since then I have declined into a slightly unsociable, mild apathy. It’s not severe or serious, but it’s not especially fun either. Like the chubby cheeks, it doesn’t feel like me. Being such uncharming company has me concerned about not being a great partner for Roy, though as usual he never complains about how little he receives from me. He wanted me to mention here that he is rather dull too, but I’ll leave that joke to him!

While my mood has meant I haven’t been actively seeking company, I know some friends have been hesitant to visit or reach out, not knowing how I am. And flu season had many staying away for fear of bringing viruses while my immune system is compromised by chemotherapy. But I have been happy to still be well enough to receive some visitors and go on modest outings, despite my somewhat unsocial state. I am especially looking forward to some gentler weather (this week’s sunny skies brought freezing temperatures of -10 C here) for tea-time out of doors! Maybe soon I won’t just look like Casper but be as friendly as him too!

(More posts coming soon.)

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A short video on dying

Dr. Kathryn Mannix, a palliative care doctor, describes how gentle the dying process can be in this short BBC Ideas IMHO video, “Dying is not as bad as you think”.

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On Spring

I truly didn’t think I would see another spring, but this past week we did indeed officially reach the Spring Equinox! Of course, where I live it’s hardly spring in any real sense. Mounds of snow cover the gardens, and the other day the wind was so cold I had to cover my freezing face with my scarf while walking into it. The sun is stronger and the days are longer, but otherwise winter has hardly loosened its grip. Soon it will be April, and the melting will quicken. I know one day the spring flowers will be pushing up again, but it’s still hard to believe at this point.

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I like to celebrate the Equinox as a moment of balance for our planet. Dark and light reach an equilibrium, reminding us that life and death have equal and inter-dependent roles in our world. All life springs from death. The light pushes back the darkness. Hope eases us from despair. Now that we are in spring, the light, the life, the hope and happiness, are in their waxing phase, increasing until we reach the Summer Solstice. The Equinox reminds us that the extremes of the Solstice dichotomies are not the one truth; our polar opposites have their moments of equality. And none of these moments are stable; we are always passing through them, shifting almost imperceptibly towards the next moment of change. For change is the one truth that we can count on. Nothing will stay the same. What we cherish today will be lost tomorrow. What lives will die. And new life will come from that death.

These seasonal cycles are quite dramatic in the northern latitude where I live: the winter is a long and often tiresome combination of bitter cold or slushy mess, the spring is a fast and profuse bursting of new life, the summer steamy and intense, the fall a mellow glory of fiery colour like a phoenix. I have always loved the turning of these seasons and the yearly lessons of each quarter turn. From spring equinox to summer solstice and from fall equinox to winter solstice, I am reminded of this balance of renewal, the cycle of birth and death. It has been a comfort to me always to remember that though the light will fade, it will also return. There is no need to despair; we have only to honour the moment we are in and all it has to offer, knowing it will soon change.

Here all life in the garden dies or goes dormant in the fall, and we have six months to wait for the green of life to return to the trees and the earth. This waiting demands some faith. Perhaps I should credit my lack of patience for motivating me to find something worthwhile in the moment—I certainly can’t wait that many months for beauty and joy! So I learned to love the stark beauty of winter, its quiet stillness and subtlest colours. When I wrote a book of poetry structured around the seasons, winter proved to be the richest season for me. Here is one of the poems:

Last night in the moonlight

Yet for us as animal life forms, the renewal of life is not for ourselves as individuals (I don’t believe that when I die I will be physically reborn). For most of us, the renewal of life comes from our children, whether our own or those of our fellow humans. The cycle of life for humans is far longer than the year’s circle of seasons, but its lessons are the same: we need not despair; everything will change, whether we want it to or not; we have only to live this moment in all its mystery.

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This was something I was coming to more fully realise as I turned fifty just before I fell ill. Approaching menopause is an unapologetic reminder to women that youth and beauty, vitality and desirability do not last; that our bodies, no matter how hard we try to keep them young, will move into the winter of life—unless we die first. My own aging was undeniable. My children had grown up and moved out. I saw most of my friends struggling with the challenge of aging and dying parents, and knew my own parents, though still healthy and active, would eventually follow. Their parents were long dead already. We humans, like all life forms, have our cycles too.

My first fifty years had been mostly about growth and gain: reaching adulthood and having children, making a home, developing a career, building relationships, growing a garden, etc. I saw that, as I passed beyond the half-century marker, my life would increasingly be about loss. Not just physical loss, but also social loss in my life as a mother, as a daughter, as a worker, as a lover. Material loss too: the family home where I’d raised my children was now too big for just me and would need to be sold. So many things I cherished would have to be given up. Loved ones would die. I faced the fact that, eventually, everything would be lost and I too would die. I wasn’t happy about it, but I would have to accept it. My illness has accelerated this process of loss, but it hasn’t changed the essential truth: all this, all I hold dear, just as much as all that causes suffering, is temporary.

That is how it is, and how it must be.

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