On Susan’s Last Days

This is Roy, Susan’s partner, passing through her blog to share a few things. It has been just over four months since Susan died. I know many of you are wondering how Susan’s death project ended. I have written an account of her last days, and of her death and burial. To respect this precious place that Susan created and nurtured, I have chosen to post pieces on those events on my own blog at The Long Goodbye. I continue to write through my own grieving process, and about Susan, and her lasting effect on me and others. The Death Project will remain here as Susan wanted.

Susan, at the stream


“Each that we lose takes part of us”
Emily Dickinson

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On Susan’s Death

Susan Jeanne Briscoe
November 13, 1966 – August 31, 2018

It is with great sorrow that we announce the death of Susan on Friday, August 31, 2018 in Montreal at the McGill University Health Centre (Glen) palliative ward. Her sons, Oliver and Nathan, and her beloved partner, Roy Cross, were by her side. Susan also leaves to mourn her parents Bob and Raye Briscoe, sisters Lorraine and Tracey, brother Rob, nine nieces and nephews, and numerous dear friends.

Susan was born and raised in Montreal. After completing a Bachelor of Arts in English Literature at McGill University, Susan moved to Vancouver and worked at a women’s shelter before returning home to Montreal, where her sons were born. Susan’s greatest joy in life were her two sons: Oliver and Nathan. She moved from Montreal to Sutton when her boys were young to give them freedom to roam, explore, and blossom. She home-schooled them at times, and dedicated herself to parenting with love, compassion, and kindness. They were most precious to her and she was so proud of the men they would become.

Susan loved nature and felt deeply connected to all living things; she was particularly fond of the hills and woods and streams of the Eastern Townships. The simple act of walking barefoot over mossy fields, or through tall grasses with bare legs, or witnessing bright sunlight beaming through a tree leaf, brought her such bliss. While living in Sutton she completed a certificate in Fine Arts at Bishop’s University, and earned a Master’s degree in English Literature and Creative Writing from Concordia University. Her book of poetry, The Crow’s Vow, was highly praised and regarded as an exceptional work.

Susan was a teacher and researcher at Dawson College in Montreal when she fell ill. After her terminal diagnosis, Susan created The Death Project, a blog in which she beautifully and honestly wrote about living and dying. The blog has touched tens of thousands of readers from all over the world. Susan loved art in all forms and took great pleasure in gallery visits, the ballet, circus, theatre, and cinema. Her taste in music ranged from Bach to Bowie to New Order. She recently created a special Canada Council for the Arts award to support women writers.

And oh, Susan’s radiant, brilliant, wonderful smile! To see it was to feel love. She lived her life with integrity, grace, dignity, and great joy. She encouraged people to give their gifts to the world, to be honest, to be kind, and — most of all — to love. Susan’s light and love will be deeply missed by everyone who knew her.

The Gentian weaves her fringes—
The Maple’s loom is red—
My departing blossoms
Obviate parade.
A brief, but patient illness—
An hour to prepare—
And one, below this morning,
Is where the angels are—
It was a short procession—
The Bobolink was there—
An aged Bee addressed us—
And then we knelt in prayer—
We trust that she was willing—
We ask that we may be—
Summer, Sister, Seraph!
Let us go with thee!
In the name of the Bee—
And of the Butterfly—
And of the Breeze, Amen!
Emily Dickinson

Special thanks to the oncology department at the Jewish General Hospital and the palliative care unit at the MUHC (Glen). There will be a private ecological burial in the Knowlton Cemetery. A memorial service and reception will be held at the Unitarian Church, 5035 de Maisonneuve Blvd. West, Montreal on Saturday, September 8, 2018 at 3:00 p.m. Additionally, those who so wish are welcome to celebrate Susan’s life with her family at the Briscoe’s home, 15 Spring Hill, Knowlton, Quebec on Friday, September 7, 2018 from 5:00 to 7:00 p.m. In lieu of flowers, please consider a donation to a women’s shelter and/or your local blood bank.

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Recommended Reading

Check out my reviews of recent books on death, dying, illness, and grief. So many excellent books!


Some of the books by my side at the moment.

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July Update

It is already July, and the lilies are blooming!


Brilliantly coloured lily stamens.

I had hoped to enjoy some chemo-free months this summer, but it seems that is not to be. My disease is progressing quickly again, so I will be starting the second line of palliative chemotherapy (doxorubicin and olaratumab) as soon as possible. This drug (olaratumab) has only recently received conditional approval in Canada and isn’t actually available yet except on compassionate grounds. Just waiting for the paperwork to go through!

Much more interestingly, I’ve also been working on a list of excellent books for you to read. It will be posted soon, with updates added as I catch up on my summer death reading!


And one of these days I hope to get around to posting more of my own writing on all sorts of topics! I have a large folder full of drafts waiting to be finalised. But the call of my wild garden has been irresistible, and I’ve had so much fun wandering the paths that Roy has cut for me and taking photos of my flowers and other wonders growing in this gorgeous season of warmth and sun and rain.

smelling roses

Smelling the roses! These ones have a divine, spicy tea scent (photo: Roy Cross).

I hope you have been well and at peace and enjoying every moment that you can get close to nature this summer!

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June Update

I feel bad that I haven’t posted anything but updates lately (I have several posts waiting for revision when we get a rainy day), but I very much enjoyed the wonderful spring instead of spending time with my laptop. I thought another update was in order, however, since corrections are necessary after my consultation in New York.

The spectacular sunrise reflection as seen from my park-side hotel room, thanks to my generous dad. After seeing this I set my alarm for 5 am each morning to treat myself to the dawn views.

I was a little doubtful about the scan report I wrote about last time, since it indicated that my tumours had, contrary to all expectations, pretty much disappeared. Another radiologist has since looked at those scans and seen multiple tumours of various sizes as before, some shrinking a little, some growing a bit. This reading is much more in line with what I was feeling in my body as well as what everyone thought would happen. I’m not sure why the scan was so misread the first time, though I know I was given only two of the three prescribed contrasting drinks before the scan, since the technicians somehow forgot one. In any case, the revised reading makes much more sense. It is also more aligned with the scan I had done last week, which shows similar masses.

I have decided to take a break from chemo with the NY specialist’s advice. Hopefully I will get a couple of months without too much disease progression before having to make more decisions about treatment. I really don’t enjoy time spent thinking, writing, or talking about this disease or how to treat it—nor time in treatment. So now I will go back to spending precious time with my dear loved ones as well as enjoying my garden and taking photos of the flowers. You can see what I’ve been looking at on my instagram page.


One of the beautiful daisies Cheryl, Roy’s ex, gave me—one of so many kind gifts I have received from her.


I was so fortunate to feel well enough to enjoy this recent trip to New York, unlike the previous two for medical consultations. This was a real vacation, with lots of walking through Central Park and the art museums and galleries with Roy. Since art and nature are two of my favourite things, I was very happy! The weather was also spectacular, so we enjoyed our porridge (there was a healthful take-out restaurant right on the corner) by the lovely lagoon in the park every morning.


We also saw Swan Lake from the second row at the Metropolitan Opera House! And some inspiring work at the MoMA! And an exhibition of Jenny Saville’s huge, fleshy paintings! (I once wrote a paper on her for a contemporary art history class, so I was delighted to happen upon this show in Chelsea.) Plus we enjoyed a relaxed Saturday afternoon lying on the lawns of Washington Square Park, where I was so happy to see young people reading books, and a day wandering Brooklyn. So many highlights to this trip!

Passersby and young women reading in Washington Square Park on a sunny Saturday afternoon.

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Spring Update

I’m not on my deathbed just yet! Friends are surprised when they see me out and about at a café or art gallery, looking unexpectedly well (despite also looking grotesquely pregnant), so it seems another update is in order.

The short version

I have been quite stable with palliative chemo since the winter and very happy to be feeling better as a result. I have no idea how long this will last, so I am enjoying each day as it comes!

The long version

I’ve been feeling much better since starting a second round of palliative chemo with the new year, so I knew the chemo was working. Finally in April I had a CT scan, and we were all happily surprised to learn that, though one small tumour on my bladder had grown a little, most had pretty much disappeared. My oncologist said he’d never seen this sort of shrinkage before, so he took my case to the tumour board to discuss what steps to take next. They want to look into the possibility of radiation on the one growing tumour, though it’s probably too large for that. They also want me to continue chemo, believing that if I stop, the tumours will quickly grow back, and since I have been tolerating the chemo quite well with only mild side effects, they think I can handle more.

My city garden nook for tea with friends.

But I would like to take the summer off, both to enjoy this time I have been blessed with (the whole point of the chemo) and to let my body recover. My father has made me another appointment with a specialist in this very rare disease at Sloan Kettering in New York, so we’ll see what she suggests. My guess is she’ll also recommend a break from chemo. The last two times I was in New York City to see her I was too ill to do much, so I’m hoping to still be feeling this well so I can enjoy a few days walking about the city. There is so much art to see!

The tumour news is good, and no large tumours also means less pain to manage. I can sit much more comfortably now, so I can enjoy outings to cafes and linger at the table. But I also still have malignant ascites (accumulation of fluid in the peritoneal cavity) that cause abdominal distension, pain, and discomfort, restricting my activities somewhat (no yoga or exercise, and only a little gardening). They also indicate a very poor prognosis, as this is normally an end-stage symptom. I have other swelling too from chemo and steroids, so I’m still about twenty pounds overweight (a lot on a small person). I’ll see if I can get another drainage of the ascites, at least — a super-quick weight loss program!

Ultimately, however, I suppose the bad news negates the good news in this situation; I don’t know exactly how this disease will progress, but medical opinion is that it will.

But I am not suffering (thanks to effective pain medication!) and remain weirdly healthy, energetic, and happy.

I am especially delighted with the gift of another spring and am taking every possible moment to enjoy the flowering and greening of the world around me. I’ve been having lots of fun photographing some of the wonders of nature with that new (is a few months still considered new in the realm of technological devices?) phone that still causes me grief. It has a pretty good camera, though! You can see more of my photos on Instagram if you’re interested.

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On Trees

It is May Day, but spring has been late to this part of the planet. The daffodils are just starting to bloom, but their trumpeting seems tentative, not blasting like some springs, and the tulips aren’t yet brave enough to stretch their necks up. Leaves are a long way from gracing the trees: it has been six long months since the world was green. But the snow is finally gone and it’s warm enough for morning walks.

This reawakening of nature has nudged my spiritual side awake. My somewhat regular meditation practice, which I took up last fall (I have over the years meditated only sporadically but fruitfully), was disrupted by my pre-chemo illness at the start of winter. Then my medications (very stimulating steroids) made it too difficult for me to be still for my evening’s hour of meditation in the bath (the most comfortable place for me physically). I’ve since lowered my dosage, but now my piccline (an IV catheter in my arm that stays in long term) means no baths.

I’ve missed being in that meditative space, so it’s time to find another way in to a regular practice. I’m doing my best now to devote an hour of the day to spiritual pursuits (I like early morning, though that’s also my best writing time). I don’t want to call it meditation, since some of this time might be contemplative reading, or a nature walk, or even journal writing. I don’t think it matters, as long as my focus is on connecting to my spiritual place in the universe. I especially like walking meditation, which is most wonderful in the woods when I can get to them.

tree-with-roots-drawing-34When I sat in a brief meditation one day last week with Roy, the image of the tree came to me. I thought about the mirrored structure of the root system below ground and the branches above. The roots draw nourishment from past life, from dead organisms that have decomposed into fertile soil. The leaves on the branches gather energy from the sun, the light of the present moment. The tree then expresses itself by flowering and producing the fruit and seeds of the future.

As humans, we do this too. We are rooted in the past, formed by all that has gone before us—death, in other words. But we are also taking in everything from the present. And these two sources, past and present, or death and life, inform the expression of our selves and our creative spirit; the two together produce the gifts we offer the universe in turn—our own flowering of self and the fruits of our being.

more blossoms

So it is essential that I look to the past and understand what has come before me, as well as cultivate my relationship with death itself. Heidegger (my philosopher friend Susan Judith has introduced me to his ideas about death) would agree with this: he believed that only those who truly grasped mortality could be authentic and fully human. But it is also essential that I engage with the present moment, as the leaves with sunlight. These two dimensions are what help me to develop as a person as well as to express myself, offering my gifts to those who survive me, to the future. These pursuits will continue as long as I am alive, to the very moment of death itself.

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On Chemo

I have just completed my second round of palliative chemo. People keep asking me if I’m happy about that, as most patients celebrate completion of chemo as the first step to wellness, especially when they finish with no evidence of disease (NED). At my former hospital, a bell (thanks to The Bell Fund, which also provides comfort kits to chemo patients) is rung in celebration of the end of each patient’s final cycle.

Things are different for me. This chemo has kept me stable since the beginning of this year, but there is no telling how my tumours, which are still there in my belly, will respond without chemo to keep them at bay. They may go straight back to rampant growth, and I could be seriously ill again in no time, as I was in December. Or if I’m really lucky again, my disease won’t progress for a few months, like after my first chemo regimen, and I’ll have a nice spring and bit of summer. At this point, I have no idea which it will be, or if there are other possibilities. So it is hard to be excited about this chemo being over.

It is also impossible to plan. All I can do is remind myself that I have today and make the most of that gift!


Me and my snuggly cat Piggy, almost ready for the day.

Now that I’m on the topic of chemo, I have a few other things I’ve been meaning to share. I sometimes hear of people, when newly diagnosed with cancer, refusing to try chemotherapy in fear of the side effects. I used to be pretty negative about chemo myself, especially for palliative patients. Some cancers simply don’t respond well to any of the chemicals currently in use, and there is little point in pursuing such treatments, especially when they are so toxic. I’ve read of so many patients who, desperate not to die yet diagnosed with terminal, untreatable cancer, would try anything to prolong their lives. They often end up making themselves sicker and weaker with ineffective or trial chemo than they would have been from their cancer symptoms alone—and even thus hasten their deaths. Such cases are discussed in books by physicians like Atul Gawande’s Being Mortal and Sherwin B. Nuland’s How We Die (both excellent books). When I was first diagnosed, my initial position was to not do chemo, since the chances of just partial success were so low, but I changed my mind and am glad I did both times. I would almost certainly be dead already without it. Instead, I have enjoyed considerable wellness, even in the thick of the chemo treatments.

chemo warning

There is an important difference between curative chemo and palliative chemo. Curative chemo is the kind that can actually make cancer go away completely and even permanently, which is a miraculous thing. Sometimes it works very effectively and even immediately. Sometimes it’s a little more hit or miss. This all depends on the kind of cancer and the specific chemo regimen it is matched with.

Palliative chemo, while it may follow the same protocol as curative chemo, is simply meant to extend the life of the terminal cancer patient by slowing or halting the growth or spread of the disease for a time. At its best, it also relieves some cancer symptoms, as it has for me. Some terminal cancers are not treatable even by palliative chemo, though sometimes people try anyway.

There are many different chemicals used for chemotherapy, and as one patient next to me in the treatment room noted, they have some very fancy names:

  • Gemcitabine
  • Docetaxel
  • Doxorubicin
  • Carboplatin
  • Vinblastine

to name just a few. (I’m on the first two.) They each also have their own potential side effects. Not all of them, for instance, produce baldness, that hallmark of chemo. Nor do they all lead to vomiting or mouth sores. Most of us imagine people desperately hunched over toilets, puking their guts out after chemo. It isn’t always like that anymore. In fact, chemotherapy’s reputation for producing debilitating illness is no longer accurate since advances in research have fine-tuned treatment protocols to minimum effective doses. Many people are able to continue to go to work throughout their treatment or to continue their regular routines with only minor modifications. I have witnessed some women showing up to the chemo chair as if to an appointment at the beauty salon before a fancy lunch date—they look fabulous!

Physically, I have handled these months of chemo very well. With two treatments in a three-week cycle, I usually have a few days of fatigue when I take some long naps, and maybe a day or two of slight nausea that is treatable with very effective anti-nausea medication. Then after a few days I usually feel as well and energetic as normal (thanks to other medications for pain that I take every day). As far as effects that impact my everyday life and wellness, that’s about it. I’ve often noted that my days post-chemo are no worse than a mild hangover from a couple of glasses of wine.

Some chemo side effects:


Of course I’ve also experienced a range of the more visible side effects, including hair loss. And my fingernails did become discoloured and partially fall off (painlessly) last summer. This is something the medical professionals don’t like to mention—in fact in the literature I was given they only called it “nail changes”! The one that is bothering me the most now is the weight gain with “moon-face” from steroids (not chemo), which I don’t like because I don’t look like myself. And lately there’s also been a weird thing with my eyeballs, but never mind that.

All in all, I have felt much better on chemo than before it (when I was terribly weak with anemia caused by internal bleeding), so it’s been definitely worthwhile for me to pursue this treatment. If you happen to get cancer (and sadly, chances are about 1 in 3 that you will) there is no reason to say no to chemotherapy for fear of the side effects. They really aren’t necessarily that bad, and the therapy can be discontinued if they are (allergic reactions are one of the more serious problems). But if you’re taking palliative chemo that doesn’t work and is therefore making you sick for nothing, it would be wise to rethink that and come to terms with death.


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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


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.)


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!


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!)


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!


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.


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.


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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My Article in the Huffington Post!

I’m pretty thrilled to have this piece in Huffpost Personal published today! Yesterday, International Women’s Day, was the anniversary of my surgery, but the conversation I recount in the first paragraph of this article happened exactly a year ago today. How’s that for the Universe lining things up!

I’d like to thank my dear new friend Brenda Keesal for connecting me with Noah Michelson, the amazing editor at Huffpost who took this on. Do pay Brenda a visit at her blog burns the fire: her gorgeously told stories of life and death and especially love are always an adventure of wondrous inspiration as she shines her brilliant, unique light into the odd corners of our beautiful world.

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On International Women’s Day

Today, International Women’s Day, is the anniversary of my surgery and diagnosis. I met my surgeon only moments before being wheeled into the operating room. (I had met her colleague once, but he was now away.) She was hugely pregnant and hungry, having already been in surgery all morning, and she was about to run off to get lunch before starting on my hysterectomy. But she came by my gurney where I lay completely alone in the large pre-op space. I was weak with fasting hunger and dehydration, and still shaky from having almost fainted while an epidural was inserted into my spine for part of my anaesthesia. This woman was so youthful and bright and healthy and energetic, full of not one life but two (her fourth child, I found out later)! It was such a wonderful contrast, I couldn’t help but smile.

She introduced herself, and then she told me what none of the many specialists and technicians I had seen through several scans and tests had yet had the courage to tell me, though it had been the stated concern for a month: from my recent PET scan, she could see that the rapidly growing mass in my belly was most certainly not a benign fibroid but a very rare sarcoma, a sarcoma we both knew was deadly. She was 100 % sure, though I’d been told all along only pathology could confirm the diagnosis. She assured me she would do her best to remove it all, and we would discuss further details, like the recommended chemo, tomorrow. She found tissues for me while I cried quietly, and then she ran off to eat.

I had many thoughts then, but one of them was that I was so pleased to have this woman as my surgeon. It seemed oddly fitting, if also ironic, that a pregnant woman would be removing my uterus and ovaries, and that she was in the process of bringing forth life while mine was now on the path to ending, and all on International Woman’s Day.

Susan eating in hospital

Happy to eat even hospital food after a few days of no food at all following my surgery!

A few minutes later I was wheeled into the operating room and awkwardly transferred, still crying, onto the rather terrifying, crucifix-shaped operating table. I was grateful when the anaesthesiologist introduced himself and wasted no time administering his injection while a flurry of nurses prepared my body for what ended up being over six hours of surgery. I hope they brought my surgeon plenty of snacks and a stool to sit on to get her through that! However, I know she got a break while a general surgeon was brought in for a surprise bowel resection when an invasive tumour was found there. In fact, my surgeon confessed that after opening me up (a vertical incision from my pubic bone to above my navel) and seeing how extensively the tumours had spread, she almost closed me back up again with out removing anything. I am grateful that she took on the task and gave me this year!

And so on this day I honour all women doing their jobs to the best of their impressive abilities, regardless of the circumstances, including the demands of their reproductive bodies, and for less pay than their male counterparts.

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Audre Lorde on Dying Full of Fire!

This is extraordinary poet Audre Lorde, on how to really live while dying:

I want to live the rest of my life, however long or short, with as much sweetness as I can decently manage, loving all the people I love, and doing as much as I can of the work I still have to do. I am going to write fire until it comes out my ears, my eyes, my noseholes — everywhere. Until it’s every breath I breathe. I’m going to go out like a fucking meteor!

What an inspiration! She wrote this in the year after being diagnosed with liver cancer, metastasized from earlier breast cancer, at fifty. Fortunately for all of us, she survived several more years and did indeed write fire!

Audre Lorde

This is also from her journal as she reflects on impending death and her life’s work as a revolutionary Black feminist (or Womanist) writer:

We all have to die at least once. Making that death useful would be winning for me. I wasn’t supposed to exist anyway, not in any meaningful way in this fucked-up whiteboys’ world. I want desperately to live, and I’m ready to fight for that living even if I die shortly. Just writing those words down snaps every thing I want to do into a neon clarity… For the first time I really feel that my writing has a substance and stature that will survive me.

I have done good work. There is a hell of a lot more I have to do. And sitting here tonight in this lovely green park in Berlin, dusk approaching and the walking willows leaning over the edge of the pool caressing each other’s fingers, birds birds birds singing under and over the frogs, and the smell of new-mown grass enveloping my sad pen, I feel I still have enough moxie to do it all, on whatever terms I’m dealt, timely or not. Enough moxie to chew the whole world up and spit it out in bite-sized pieces, useful and warm and wet and delectable because they came out of my mouth.

(Thanks to Kelly McKinney for sharing this post about Audre Lorde and setting me on a morning of reading her again.)

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On Technology

I had hoped my phone would outlive me. I hate wasting my time on technology, and I didn’t want to spend any of the precious little time I have left learning how to use a new device. Already last month I had to get a new laptop, which I still haven’t quite got used to. So I’ve been hanging on to this old blackberry with its tiny mechanical keyboard for coming on seven years. People laugh when they see it. I try to claim retro status, as if it’s almost cool again. I’ve never even used its more sophisticated features, like access to the internet or email or apps. For me it was always just a texting machine, alarm clock, and phone. Now and then I snapped a photo or used the calculator. But it in all those years it has served me more or less faithfully, never needing a repair. Even the original battery still charges.

But then it stopped picking up a signal. I brought it in and we tried a few things. Nothing worked. Since I no longer have a land line, not getting a new phone wasn’t an option. My dear son, the one studying computer science, not the one who inherited my aversion to technology, met me at the store for moral support. And thank goodness he did, as the salesperson and I couldn’t find a common language (though we were both speaking English). Now I felt old and retro, but not cool. In the end, Oliver took care of everything, speaking to me, then to the salesperson, then back to me, like an interpreter. I stopped even listening to or addressing the salesperson, as if I didn’t understand. Not the type of social interaction I prefer or am proud of, but the only way I could cope with the situation and leave with a phone. I wish I were more evolved, but I consoled myself by thinking she could add me to her horrible-customer stories to amuse her co-workers.

My other son told me what kind of phone he would like to inherit, so that took care of some of the parameters. Oliver googled online reviews. I made colour selections. We ate some cookies I had brought to sustain us through the signing of the contract. Finally I left with my first touchscreen device, which includes a decent camera so I can add more photos to my blog posts, which I just figured out how to do on my phone. I will probably still be learning how to use it until I die. But I can now access my blog and all of you right here on my phone! And my son is pleased to have both a decent phone and a laptop to inherit!

So thank you, Oliver! And you’re welcome, Nathan!

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A Preview of Paradise!

I thought I didn’t need a vacation from my sick leave, but I see now how much more deeply I am relaxing and recuperating from the chemo here in gorgeous Costa Rica! And just enjoying! With the crashing of the ocean and the chirping of insects to lull us to sleep, the warmth of the sun and the cooling breeze keeping the temperature just right, and the beauty of the light and magnificently varied vegetation to feed my soul, I couldn’t imagine a more restorative and pleasurable experience. Each moment has been its own version of perfection. We are even blessed with kitchen staff willing to accommodate my odd dietary needs.2018-02-21 08.18.19And we have seen monkeys! Fiercely growly howler monkeys all around! They sound like King Kong in the tree tops, truly intimidating, but then they just drape themselves over a tree limb, tethered by their tails, and nap: an excellent example of how to relax! And we are delighted by the plethora of hermit crabs scurrying into their vast variety of shells on the paths at night. They are a wonder!

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On Travel

When I returned from London in December, I was unwell and sure I would not travel again. Yet here I am on a plane somewhere, perhaps over Florida, on my way to Costa Rica. Last year Roy and I had been planning this trip when it became suddenly apparent that I was too sick to go anywhere. We’d never taken a real vacation together before – nothing more than a weekend in Toronto or Ottawa. So I felt this was something we should do if I had the chance. And with him on reading week at the university and me on my week’s chemo break and relatively well, this was the chance, perhaps the last one.

I’m ambivalent, though, about traveling. I always have been. I’m a rooted sort of person, so something always feels wrong to me about flying around the globe. My parents and siblings are the opposite: there are often times when I’m the only one in the city where we all six still live, at least part time, them off on all continents for business or pleasure. Usually I couldn’t even say where each of them is. My older son Oliver is like me. However, he too is away now on a holiday with his father and family, probably somewhat ill at ease to be so far away from his daily life. While given a choice I usually prefer to be home, I do make sure I fully embrace and enjoy my travel experiences.

I don’t believe, for myself at least, that traveling is necessary to personal growth or to understanding the world we live in. (I think literature, movies, culture in all forms, and even now social media can do an adequate job of making us citizens of the world.) That said, much depends on how one travels. Embarking on an organized tour that trots one about like a herd of sheep isn’t going to give anyone much exposure to the way people really live anywhere. Nor will staying at an all-inclusive resort (relaxing as it might be) do anything to reveal a people’s culture. Traveling alone and actually meeting local people or staying and working in a place for an extended period of time can be worthwhile, I think. (I won’t say much about volunteer tourism, except that it is far better in many instances to simply donate the travel costs to the cause.)

The fortunate thing is that I now know how to be happy wherever I am, so I will be delighted with my new surroundings and thrilled with the water, the profuse vegetation, and hopefully some wildlife. I might even see monkeys! The biodiversity in this area is supposed to be among the most abundant on the globe, so witnessing that will be a special privilege. It will be green and beautiful, and I will be in bliss!

Much of my own ambivalence, now and in the past, comes from the fact that I don’t want to leave my happy life at home. This week I felt no need for escape or respite. I was content and comfortable, excited about my writing and knitting projects, enjoying my visits with Nathan and others. Usually Montrealers are desperate to get away from winter by mid-February, but because I have been on sick leave and able to just stay in when the weather is horrible, this winter, long as it has already been, hasn’t bothered me much. Besides, I love winter – though a few recent hard ones had me decided that a short break at my age might be a good idea: being cold all the time does get tiresome. But the medication I have been on recently keeps my metabolism so revved up that I’m never even chilled. Nevertheless, here I am on my way to the rainforest at the edge of a hot, sunny beach on the Pacific!

We’re staying at a sustainable eco-resort and will make sure to pay our carbon offset as well (Costa Rica has a program for this: http://www.fonafifo.go.cr/). One of my primary concerns with travel is its environmental toll. The strain of tourism development, while ardently sought by many local economies, is often terribly destructive to local ecologies. (This particular resort takes many measures to minimise harm and has been recognised by National Geographic for its sustainability efforts.) Flying is especially devastating to the planet, so I always feel guilty about it. In fact, until this past year, I did my best to avoid flying and other forms of travel. I have never flown so much as in the past six months! But I try to forgive myself, knowing I soon won’t be making any demands on the earth except to decompose my body.

But then travel still makes me feel guilty for the excess of privilege that even makes it possible. Every person on this plane is white. Every one is far enough away from poverty to indulge in this luxury of a warm week away. It is a stark illustration of global inequity.

So why am I here in this plane? The day before leaving is always the worst for me. I get anxious about packing and preparing. This time was especially bad as I worried about forgetting needed medications when we will be hours from any hospital. So my mood was not the best, and I started to feel that I was taking this trip not just with guilt but out of guilt. Guilt that Roy and I had never taken a vacation together, never been somewhere warm to relax and indulge in the simple pleasures of sunshine and water. I know he has been tired, that winter wears him down. That work wears him down. That he always needs more self-care. But guilt is a terrible reason to do anything. Probably one of the worst. And certainly not the way to enjoy a trip.

So I had to figure out a way to not feel guilty or this trip would be a failure. Instead of doing this despite my own ambivalence, I had to make this something I wanted to do. And what I want to do is give Roy this gift. A gift of time together. Time away from the harshness of winter. Time away from the concerns of his job, of my illness and treatment. Time away from the challenges of parenting two teenaged boys. Time away from figuring out what to do for supper. I want to offer him time instead with a warm breeze from the sea caressing his face, time floating in warm water so the weight of all troubles falls away. Time with all our needs taken care of by others. Time together to fill him with love and affection to recall in the time ahead when I won’t be by his side. Time before there is no time left.

Of course, that time doesn’t have to be in Costa Rica at a luxurious resort. But my mother also wanted to give us this gift. Allowing someone the gift of giving means being willing to receive. So now we have a chain of gifts, each bringing joy to the giver and to the receiver. This gift is beautiful, as is the giving, and I am enormously grateful for receiving it. So I thank my mother for her gift, and I thank Roy both for receiving it and for sharing it with me.

So now I am happy to be here on this plane. Though this trip is an extreme luxury, it is a gift that Roy will cherish and remember, that brings me great pleasure rather than guilt, and that will bring my mother joy in knowing she has made our joy possible. And I will delight in every moment in our lovely, secluded “casita” watching the sun sparkle on the sea, surrounded by the magnificent jungle and its marvels of nature. The further we fly, the further I leave all those guilts behind.

Susan Hammock Costa Rica

And here I am, ready to view our first Pacific sunset!


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Roy’s Article in the Huffington Post!

I am so thrilled with this! Roy has a beautiful article up for Valentine’s Day in Huffpost: My Girlfriend Is Dying Of Terminal Cancer, But Here’s Why I Still Feel Lucky!

heart no outline

I know I am the lucky one to have someone like Roy accompanying me at the end of my life’s journey. Not many men could do this with such grace and generosity, not to mention patience and understanding. It’s not easy and there’s no guidebook (not yet, at least: he’s writing one now!), but we are figuring it out as we go. I have so much to be grateful for: Roy is one of the sweetest gifts!

See Roy’s blog for more of his always moving writing: And sometimes it goes the other way.


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On Magic

I got very sick at Christmas and never finished writing this post at the time. But since I just took my tree down last week, perhaps it’s not too late for one last word about the moment when magically, a newborn baby is the most important being in the world!

I’ve always loved Christmas. As a child it seemed a truly magical time. And I mean literally magical. All the ordinary rules and routines of the world were, for that brief moment, completely suspended. My dad didn’t go to work or night school and just hung out with us, a rare treat, all cozily crowded into the living room. We didn’t have to get dressed out of our new flannel nighties all day, except in fancy clothes that I loved for dinner. Our access to food was always tightly controlled by my mother, but now we were allowed to eat all the normally forbidden foods –candies, cookies, chocolates– without even asking: they were just laid out for the taking. The division between indoors and outdoors was transgressed by bringing nature, an entire tree that reached the ceiling, into the house. Even the rules of night and day were broken when we were woken at midnight on Christmas Eve (a French-Canadian tradition) to open the gifts that Santa had left just moments before. And the presents: there was no other possible accounting for this abundance than Santa’s magic: these were years when my parents could never have afforded such a luxury as new toys and stocking stuffers for all four of us children—or so I believed. The only logical explanation was magic.

Even the stories and the music were all about magic. My favourite was (and still is) How the Grinch Stole Christmas, the original animated TV special true to the Dr. Seuss story (the later feature film with Jim Carrey is to me an abrasive monstrosity missing all the tender charm of the original). And we would gather near the beautifully lit and decorated tree, the other lights dimmed and special candles lit, to listen to A Paul Reid Christmas, a radio show of sentimental Christmas stories and music. How I loved those stories! The Littlest Angel, one of the first stories that made me confront mortality, made me cry most of all. What was especially clear in all the stories and songs was that what made them magical, as the Grinch demonstrated when his heart grew three sizes that day, was love.

I figured this Christmas tree was my last one, and since I missed a week of the holidays when I was in the hospital, I wasn’t in a rush to take it down. And then I made the mistake of asking Nathan if he wanted me to leave it up until his return from London in early February. (He had to miss Christmas at home with us again this year.) He said yes, so I was stuck with the tree until he got back last week. We spent our first visit happily undecorating the tree and sweeping up the now crispy branch tips that snapped off as we did so. But I so enjoyed having the tree up all those extra weeks, reminding me of the magic that is really always there.

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My Blog Title

WordPress asked me to write about my blog title, so here that is, along with a few other title stories! What’s the Story Behind your Site Title?

My decision for the site name was quite spontaneous: titles either come to me in a flash or not at all (that is, in an agony of prolonged indecision and dissatisfaction). I did, however, have many second thoughts about this one. I know The Death Project sounds harsh and even off-putting to many readers, which is certainly not what site owners want! But I really wanted to confront people with our cultural fear and denial of death. I wanted to say, this is what is happening to me, and I challenge you to not look away. I challenge you to look more deeply with me. Because while I’m the one dying at the moment, you too will die. We all have a death project, whether we want to engage with it or not. That death project is life.

So I think the name speaks well of that aspect of the blog. People might think it sounds negative, but my posts are gentle and focused on the positive in death and dying, exploring how embracing our mortality is what truly makes life meaningful and beautiful. Death is what makes love so crucial. The title doesn’t do much to articulate these other themes that I explore, but I hope it brings people in. Maybe I need a subtitle!

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I can’t imagine being happier or more excited about life. I’m one lucky woman! Even the city is beautiful under this fresh snow sparkling in the sunshine!

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On the Moment

Last week was a wonderful week. On Wednesday, as I cheerfully settled down to some writing, I commented to my son that few people would believe I am as happy as I am. I know on the one hand some imagine that the terminally ill must be making 100% of every moment of every day, celebrating all we can since there are so few days left. And on the other hand are those who imagine the dying must be crushed by an immense suffering and depression at the prospect of leaving the world.

It would be nice to be in that first, always-happy group, but that’s hard (probably impossible) to maintain, especially as life –with all its challenges– just keeps on happening in the meantime. Leaving aside the issues of illness, sometimes my days end up dull or misdirected for various reasons. Sometimes there are heavy things to process. Sometimes there are annoyances. But lately, those days are rare. Most of the time, I really am in that happy place!

For me, the key to getting there is being in the moment. When I am managing well, that’s what I’m doing. There’s not much magic to this “in the moment” thing. It’s just that well-popularized Buddhist teaching that’s everywhere from instagram memes to glossy yoga magazines. It would be easy to be cynical about it. But I have to say, it works!

Decades ago in a hard time of my life when I desperately needed help just to get through the day, I was directed to and read a little bit of Buddhist philosophy. It made sense to me intellectually, spiritually, and emotionally. Most importantly, it made me feel better. Very likely, I got much of it wrong from a proper Buddhist perspective. But the “letting go” part especially worked for me, as part of my struggle then was anger at a situation that I had no control over (my younger’s son’s father’s abandonment of us). But I never took up a proper meditation practice: I just couldn’t manage it as a single mom at that chaotic time. Instead, I tried to bring some Buddhist principles into my daily life. This is probably not the ideal way to achieve serenity—let alone enlightenment—as it was easy to forget and end up off track—sometimes for years. But something was planted deep within me, and it took root enough to be bearing fruit now. Detachment and acceptance. Compassion and kindness. Being in the moment, present to all that is without judgement. These were the concepts that helped then and bring me true happiness now.

This moment! It’s all we ever have. And what delight there is in this moment! Most mornings, I awake so pleased to greet the day. I delight in the comfort of my bed, the purring of my cat, and I am grateful. These are the smallest, simplest things, but gratitude for anything brings happiness. And there are even more big things to be grateful for. That Wednesday as I sat down to write, the sunshine set the ice to sparkling on the trees. I was not suffering. My loved ones were for the most part well and healthy and happy. I was alive in this wondrous world. There was so much to be grateful for.

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On Changing the World (1)

A year ago, I attended the Women’s March here in Montreal in a rousing moment of sisterhood with women in so many other cities of the world. I wasn’t feeling very well that day, as my still undiagnosed disease was rapidly progressing. But I donned the pink pussyhat I had knit up, then took some painkillers and a lift downtown. Happily, I ran into many friends while there. Last weekend was another march. Because I had chemo two days before I wasn’t sure I’d be up to it, but those painkillers and another lift got me there again.

pussyhat photo

Me at the 2017 women’s march

As I’ve mentioned before, social justice issues have been a consuming passion of mine and a large part of my work in life. But when I got sick last year, I handed over all my work in anti-colonial issues to my amazing colleagues. For the next several months I just couldn’t stomach any news or discussion of the harm people were doing to each other in the world – and it seemed there was so much! I was especially traumatised by the US election. Any news story about things like racism or sexism triggered a mild PTSD; I literally felt ill and had to leave the room.

I recognise that being able to choose not to listen to some of these stories is yet another privilege that would not be available to me if I weren’t white. Those who are struggling more directly with racism don’t necessarily get to opt out of that because they’re sick—though there certainly are gender issues in illness! (In small things like the male nurse who took the opportunity to lift my surgical gown for a peek while I was incapacitated and voiceless in post-op recovery, and larger issues like under-funding for women’s health.) Nevertheless, my terminal diagnosis was pressing, and I turned my focus on dying and started writing about it for my blog.

The immediate and overwhelming feedback to my writing showed me that here was another area in need of profound social change. The more I read and thought and wrote, the more I saw how central our society’s fear of death is to so many other problems we create for ourselves both personally and politically. So that became the new focus of my social-change work: talking openly about dying to counteract our cultural denial of death. Fully and deeply acknowledging our mortality, I have come to see, leads to a much richer and more meaningful life. It assuages the fears that lead us down the wrong paths. It reveals the emptiness of the pursuit of status and the material, and the fullness of kindness and connection. I believe now that mortality is a gift. And it’s a gift we can share.

When I first graduated from university in the early 90s, I went to work in shelters for victims of domestic violence. I also received rape crisis counseling training and worked in a shelter for women who were not only victims of domestic violence, but all sorts of related historical violence, including child abuse, sexual abuse, rape, forced prostitution, homelessness, racism, substance abuse, and colonial violence. It was clear to me at the time that all of these forms of abuse and disempowerment were deeply intertwined. Today we use the term intersectional feminism to help us talk about this, and it’s crucial to see how these various forms of oppression are related. What so deeply discouraged me last year with the US election and other events was seeing how little progress we have made. The police were still killing Black people with impunity. Women still weren’t being believed when they reported sexual violence. Refugees were still being refused safe havens. Wars were being waged. Indigenous children were still being taken from their homes. The number of homeless people grew while the rich got even richer.

Despite my aversion to the news, since the #metoo movement began a few months ago I have been following it quite closely. At first I thought my need to protect myself from the trauma of news had abated. But then I realised that the reason I could follow this story was that there was something positive in it. It looked like something was finally changing. Slowly, of course, and with much resistance from the other side and an ever-growing backlash, but still: the public conversation is changing. It’s delving into new territories. It’s examining harder, more complicated, and more nuanced questions that are reaching more and more of us personally. I have read many amazingly thoughtful commentaries (see my facebook page for lots of links to these) and am so encouraged to see that women’s stories are finally being told, listened to, believed, and that these are leading to further sharing, further thinking, further examination of the social structures, practices, and beliefs that underpin them. Ultimately, it is only by deeply understanding and challenging the patriarchal and economic structures of our society and their effects on our most personal as well as public behaviour that anything will change. And I see that happening now. So I am hopeful. I am hopeful in a way I couldn’t be a year ago. Let’s see how far we can take this.

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Roy’s Blog: Courage

Where Roy explores what it takes to get through this, and it’s not quite Courage.

Posted in Roy's Blog: The Long Goodbye | 1 Comment

2018 Update

I am very happy to report that 2018 has started a little better than 2017 ended. I got home from the hospital two days ago and am feeling fairly well and energetic so far. I know that won’t necessarily last very long, so I’m extremely grateful for every moment that I feel like myself and am able to enjoy the day.

I’m not much in the mood to be online, so please forgive me if I don’t respond promptly to your messages, or if I neglected to respond to your notes while I was so ill.

I was about to wish you all a year of beauty and love and grace, but that strikes me suddenly as too passive. It is within the power of each one of us to create that world of beauty, love, kindness, peace, and all the good things we want for ourselves and each other. So let us commit to that in 2018!

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Roy’s Blog: Game Shape

Another post by my sweet man: Game Shape


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Late December Update

I was admitted to the hospital yesterday (a different hospital due to ongoing communication issues with my gyne-oncology team) to get a jump start on treatment.

Giving into my dad’s persistence, I had a consultation with a specialist in my disease (it’s rare, so such doctors are very few worldwide) in New York City last week. Because my disease is progressing so quickly again and because I got such good results from the palliative chemotherapy I did last spring and summer, she recommended that I go back on the same regimen, though at a lower dose, which will reduce side effects. She said to just go with it until there’s evidence (with more frequent scans or by my symptoms) that it’s not working anymore or until the side effects are intolerable. That sounded quite reasonable to me, so I decided to go ahead with it.

Then I had my failed consultation with my former team at home (they don’t take so kindly to second opinions) and miraculously (thanks again, Dad) managed to switch to another doctor at another hospital (who generously came in just to see me right before leaving for his vacation). Such feats are not easy in a publicly (under) funded health care system.

Then I had a second drain of 3.7 bloody liters, with my hemoglobin count already down to 68 after two transfusions the week before. However, tests since admission show my hemoglobin count had since dropped even further to 56 (normal range is 120-160) with a CT scan showing a new crop of tumours responsible for bleeding into my abdomen. So they topped me up with three transfusions overnight to a more manageably anemic 95 count.

But there is concern that the chemo will cause further hemorrhaging and lower my blood counts dangerously. So they will keep me in the hospital until next week to monitor all that. I can’t complain about being here, though! I’ve got a private room in a new pavilion with an unobstructed northern view of very cold Montreal, all the way to the Laurentian Mountains. It’s very peaceful and the care has been remarkably kind.

So thanks, Dad, for your obstinacy, your generosity, and your love in getting me here.

And once again, please donate blood.

And thank you to all caregivers who manage kindness and cheerfulness even when tired and overworked. It makes all the difference.

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On Pain and Perspective

So far today, I have not been overcome by fatigue. Nor have I struggled against pain and discomfort. It’s not quite noon yet, and I’ve been up since eight. So this has been a good morning. I’ve even had enough brain power to try to write a little. I can tell when my brain power is low, however; I won’t be writing anything brilliant. But I might remember a few thoughts and jot them down, or fill in some details where I’ve just got sketchy notes.

I’ve had few good mornings in the past couple of weeks. Discomfort from abdominal distension and low energy from anemia have got me down much of the time. I am struck by how radically these conditions shift my perspective on the world.

When I am well, I wake up cheerful. Before I even open my eyes, my outlook on the world and the day is positive. I expect good things. And generally, my days are filled with good things, like love. I am able to appreciate any incidental beauty the day brings to my window. I warmly accept affection. When things don’t go my way, I can often still be gracious. I get excited about new ideas. I want to do things.

When I am unwell, all this is reversed, and I am miserable. I feel sour, like the dried up, moldy lemon I’m sure I would find if I opened the fruit and vegetable drawer. It’s hard even to smile—I can feel my yellowing face pinched in a horrible, self-pitying grimace when I try. Yuck. It’s really hard to like myself like this. When things get really bad, the whole world, with me in it, is ugly.

I don’t know how people who suffer with chronic pain or fatigue, whether physical or emotional, manage. Sometimes I think all the people we pass in the streets who don’t smile are probably unhappy and stressed or unwell and suffering. There is an awful lot of pain in our world. Those of us who are blessed enough to not be suffering, it seems to me, could take on a greater burden to relieve those who are in pain or exhausted or depressed. We can see this happen sometimes when a stranger offers to hold a door or help carry a stroller up a flight of stairs. Everyone smiles.

I was extremely blessed in my life to live with so much wellness and vitality until recently. It made happiness so much easier. I realize now I could have done much more to share that gift with others. So many never know the joy of a healthy body and a light spirit. Perhaps we could all think more about how to balance this vast inequity, especially as the well person who gives is rarely made weaker or less well for the gift. It can be something grand, like a big donation for the holidays. Or it can be a small, personal gesture. Or both. But I’m pretty sure everyone will benefit.

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Please Give Blood!

blood drop

Last year I received several blood transfusions and put out a call for friends and family to donate blood, especially as I no longer can. (Also to please sign their organ donor cards! I have a friend waiting for a healthy kidney.) Our blood supply in Quebec is all from unpaid donors, which is impressive considering the many restrictions to keep the supply safe. I am anemic again due to abdominal bleeding from my sarcoma, and have been prescribed two transfusions tomorrow. I feel bad taking from our blood bank without being able to give back. Since I’ve been ill many of you have asked if you can do anything to help. Could I ask a few of you to donate on my behalf? (To be clear, I am not asking for direct donations; yours would go to someone else in need.) This is an easy way to give during the holiday season! Thank you!

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December Update #2

I got through my last goodbye hug with Nathan at the open door of a taxi in the middle of a busy street in London on Monday morning. It was a hard moment.

But I’m glad I didn’t put the visit off. In my last week there my condition began to decline. My wonderful reprieve is over.

It feels a lot like last February, before my surgery, with my tumours growing exponentially and bleeding into my abdomen. This morning I had four liters of blood drained (the medical team was alarmed, as they were expecting straw-coloured fluid—but no worries: they’re keeping these jugs out of the blood bank!) This means I’m much more comfortable for the moment, but in general I am expecting a continued decline. I see my palliative doctor tomorrow and recently had scans, so perhaps I’ll have more news to share tomorrow.

I also seem to have caught my first cold since getting so sick!

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Roy’s Blog: Poppins

This is Roy’s latest post, Poppins, in full.


I said goodbye to Susan the other day. She was leaving for London for two weeks and I dropped her at the airport. Planning to spend some nights at her son’s apartment, she had packed bedding into a huge suitcase, which dwarfed her as she stood next to it. It was a pretty humorous site. We had left Montreal for the airport at the peak of afternoon rush hour and had given ourselves one full hour to get there but surprisingly the road opened up for us all the way there. It was almost like magic, like Mary Poppins magic. No traffic, no construction. Even when I mentioned there wasn’t any traffic it didn’t jinx us. Twenty-three minutes from her door to the airport drop off lane! I unloaded the steamer and I stood beside her. I kissed her mouth and put both my hands on her cheeks. Her eyes sparkled, not from the kiss (I don’t think) but from the gold inside her that those of us lucky to be close to her recognise. And then she walked through the doors and into the terminal. It was a hard goodbye, that part of it, the walking away part. The metaphor of her preparing for and moving toward death was almost too much for me. Then she turned, smiled, and waved at me through the window. And perhaps with the magic from the drive in the air and her destination, the last scene of Mary Poppins came to mind, in which Mary sees her work complete, smiles, and flies off across the London sky. I guess that made me the cockney chimney sweep waving from the rooftop and telling her not to stay away too long.

mary poppins silhouette

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Not Love Actually

On my last snowy night in London, with two of us tired and not feeling well, we decided to stay in and watch Christmas movies. Online searches revealed the terrible dearth of decent holiday films, and I can never recall movie titles. But somebody had recently mentioned Love Actually to me, which two of us hadn’t seen, and one had seen long ago. It seemed to be so many people’s holiday favourite, though I’d once read a negative feminist critique. I observed that I enjoy watching movies I hate in any case. So, since it was seasonal and set in London, we overcame every possible obstacle to access it legally.

My dear friends, I can’t tell you how appalled we all were.

This was possibly the worst film I have ever seen. To explain how awful would take thousands more words. Let me just say that my sons agreed that the film should be called Lust Actually. There is so little of love in the film.

But most importantly, in the wake of the #metoo discussions, this film is shocking in its casual portrayal of sexual harassment—for which one of the female characters apologises to her boss (the British PM, no less) who witnesses yet does nothing to protect her from it. In fact, he soon has her removed from her apparently prestigious position serving him tea, since he can’t control his own attraction to her. Yes, gross power imbalances between couples is just fine in this world. These are just two of many more horrible scenes of sexism and creepy or objectifying sexuality presented in this film as supposed examples of love.

We were truly incredulous throughout the film. Do not watch it. Especially do not watch it if you are looking for something with Christmas spirit. Or something with love. Or even something with romance. (Emma Thompson’s performance and character is an exception to my complaints. Nothing else was remotely believable.)

Though one of my sons noted that the pain of watching it together was a bonding experience, I do wish we’d thought of watching Mary Poppins instead.

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December Update!

It’s time for a fun post! I realize I’ve been all serious here and haven’t shared much about the wonderful times I’ve been having traveling to visit family, taking advantage of this small window of relative wellness.

So this is what I’m seeing tonight: La Soiree! In London! And yes, that is my son Nathan donning a blindfold for part of his act in this “saucy” Olivier Award-winning show running for three months at the Aldwych in London’s theatre district!

La Soiree act

Nathan being thrown by his porter, Max.

So life is good at the moment, filled not just with the spiritual work of dying but with some of the fun of living too.

Susan and Nathan London cafe-farm

Nathan and me at the Hackney City Farm cafe in London, where I also got to pet a goat.

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Roy’s Blog: Normal Joe

This is a really thoughtful post about normalising death in a death-phobic culture: Normal Joe.

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A Video Conversation with the Incomparable Lesley Everest

Lesley Everest

Lesley Everest, a cherished old friend who is a minister, transformation companion, and doula –in addition to being a miraculous cancer survivor, amazing mom, and extraordinary person– has honoured me with this interview, the first on her brand new site, This Is What a Minister Looks Like. I am so very grateful that she took the time for this conversation full of laughter and tears, and that she has shared it with us all. I know my loved ones will be grateful too!

Leave a comment on Lesley’s YouTube site!


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On Leaving a Loved One

The other day while knitting, for diversion I picked one of the first movies that popped up in the first fringe netflix category I could find. It was Our Souls at Night starring the aged Robert Redford and Jane Fonda. They play long-widowed neighbours who finally decide to spend their nights together to relieve their loneliness. Because netflix doesn’t have any really fringe categories, of course a romance develops. Watching about a third of it was enough to get the idea.

In these months of terminal illness, I have at times asked Roy what he is thinking or feeling about his future without me, but he hasn’t wanted to talk about it much. I often mention him having another relationship once I’m gone, and we’ve made some good jokes about him bringing a date to my funeral. But I thought I should respect him not wanting to talk seriously about the time after me, and especially another woman after me, which for him feels uncomfortably close to infidelity.

Lucie, a kind friend who lost her husband to a sarcoma years ago, told me that she decided while her beloved was ill to simply make the most of her time with him while he was still alive. She knew there would be plenty of time to miss him once he was gone and to figure out her future when it came. She wanted to enjoy being with him while she could. I thought that was wise.

Susan and Roy summer 2017

A polaroid of Roy and me in June.

But not talking about it has allowed me not to think about it too much either. As I was watching that movie, Roy arrived home from work, and I turned it off. I realized why I had chosen it. And why I’d started reading Joan Didion’s The Year of Magical Thinking, her account of losing her husband. I’ve been thinking more about Roy, in particular Roy without Susan. It’s time I attend to him in some way. Unlike me, he has been quite selfless in his attendance to his beloved. He has demanded so little for himself. He has always stepped aside to allow my children and my family priority—reasoning that he gets more time with me anyway. He patiently learned to navigate the tricky territory of helping a fiercely independent person. He even learned to load the dishwasher such that it doesn’t require reloading! He’s been pretty sweet. And he never complains or says anything that might make me feel bad for leaving him—though I feel bad anyway. In fact, he often comments on how lucky he is. I think I’m the lucky one.

But I have no idea what to do about his future without me. How do I comfort him now for when I won’t be here? How can I know what he might need? Reading Joan Didion’s book and watching that movie are part of my way of trying to learn what he might need in a time of mourning or in the years to follow. Of course, neither book nor movie will tell me. For one thing, Didion’s book documents a pathological grief, not the healthier mourning I expect Roy to experience after these months of preparation. And the movie is really just about two older people who don’t want to be alone anymore. I’ll have to keep looking for sources of insight.

From my own years of experience after the loss of a spouse (mine didn’t die but disappeared, abandoning us for his alcoholism), the pain of loneliness has no cure other than what one is lonely for. I suffered through years of acute loneliness despite having friends and family and my children. My longing was for an intimate partner, for something those other relationships couldn’t give me. Of course, social time and work and fun all helped to divert me from that pain at times. But nothing could cure it. (Unfortunately, I ended up entering another unsuitable marriage in an attempt to end those years of suffering.)

Roy and Susan on train to TO.JPG

Roy and Susan on the train to Toronto a few weeks ago.

So what can I do for Roy? I recall reading not so long ago about a woman who, from her deathbed, sent out a plea for a new wife for her soon-to-be widowed husband. I have joked with Roy that I could help him create a new OK Cupid profile. (That’s how we met!) Or tinder. But realistically, as much as I’d like to, I can’t help him with this one. Without bitterness or self-pity, he says he imagines going on alone—but I don’t want him to be lonely. Neither of us have any idea when or if he’ll want a new relationship. Nor do we have any idea what woman would be right for him. He sweetly says that nobody could compare to me. But I say he’d probably end up with someone completely different from me—so there wouldn’t be any point in comparison. He says maybe he’ll get a dog. (Roy is not a dog person.) So we joke about what kind of dog would best replace me. We agree a border collie mix.

The only worthwhile thing I can do –aside from taking him shopping for some decent clothes– is follow my friend Lucie’s advice myself. I can make the most of this time together. I can do my part in making our relationship the healthiest, most loving possible, so Roy has a good model to work from for next time. Most importantly, I can love him all I can so he is left feeling full of love—enough to last him a good long time, until he is ready for someone else and s/he (you never know) for him. I definitely don’t want to leave him depleted and burnt out. I need to pour love like water from a big jug, over and into him until he is fully saturated like a sponge, overflowing.

So far, that’s all I’ve figured out. And once again, I see it’s the same conclusion as in so many of these posts. It keeps coming down to love. And more love.

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On Flowers

My sweet peas

The best part about being ill is the flowers. I received so many flowers from well-wishers after my surgery last winter and then for months afterwards, until the spring offered its own bounty outside the window. The flowers truly brightened my days, especially in the bleak hospital. I spent the hours I was alone there in the early morning gazing at their delicate forms, the tender pink and purple and brilliant yellow, the varying greens of the leaves. They brought me sweet joy in the midst of grief.

And then I spent much of the past summer, like every summer, enjoying the flowers outside. I have been especially blessed by the fragrant lilies in my tiny city garden: what a delight it was to discover them when I bought this house last year—I have counted about twenty-five gorgeous varieties, thanks to Joan, the previous owner and an amateur lily specialist. Now that it is autumn and flowers are scarce, I cherish the intricate seed heads the flowers have left behind on their stalks. They are stunning little miracles, each a beautiful design with its own ingenious seed-dispersion mechanism.

giant lily

One of Joan’s huge, fragrant lily.

I deeply love flowers. I love them not just for their beauty, but also for what they have taught me about life. Flowers, so ephemeral, have long been a core image to my understanding of life and death. I study not only their budding and blooming, but their wilting and withering too. Their lives are so brief.

For many years I have had the great privilege of living in an old farmhouse at the edge of a small town in the country. (I raised my children there, but since Nathan started circus and I took a job in the city, I have kept it as my country home—a precious extravagance.) This place is my nature sanctuary. When I bought it in the last year of the last century, the grounds had been planted partly as a mourning garden, partly as a bird garden, by the previous owner, a woman named Claire whose son had died in a motorcycle accident. (My only published short story, Claire’s House, is about her and the haunted house and her garden of grief) She put in perennial beds, fussy ornamentals, weeping trees to weep under, and many fruiting shrubs and seeding trees like sumac to attract birds. The giant willow that fills the front yard and the row of elderly maples along the road date back to the house’s earliest days as a homestead when the rest of the land was laboriously wrestled from the forest for the planting of field crops. The woods are still trying to take that land back, creeping past the fence in the dark.

So lots of the flowers I get to enjoy are Claire’s, now long dead herself from cancer. She favoured rose bushes and peonies, irises, phlox, and especially lilacs. I love the lilacs too; they are first of the spring’s heady parade of perfumes, followed by the girlish honeysuckle, tiny lilies of the valley, heavy-headed peonies. Last are the intensely sweet mock orange by the front porch, where I spent many of the early summer days this year recovering from chemo treatments. In July and August I am especially grateful for the bee balm that the hummingbirds fight over so furiously. The pretty pink tea roses that line the drive bloom from June to November if I tend to them, though this year they have been ravaged by the also beautiful rose beetle. Last summer it was the rose chafers, and before that it was the rose borer. Not to mention invasive raspberries. And even before that it was Claire herself who boldly came to dig up shoots. A year after I’d moved in, I found her driving the spade into the ground with her red suede boot. She was not one to ask for permission, nor to apologise. Her grief was all over this garden, so she felt entitled to it. And who was I with my two living little boys to complain?

Susan tiny

Garden gnome (me) and some of the phlox that Claire planted in the now overgrown garden. The mown lawn here is actually the overgrown driveway, which used to be gravel. And peeking out from under a blanket of grapevines is the overgrown shed that Claire stole from the barnyard.

Since acquiring the house, I have been purposefully re-wilding the acre or two left to it when the farmland along the road was sold off and sub-divided into housing lots for small bungalows. (Fortunately the fields in back with the old barn were not divided and remain a meadow, backed by woods.) I should be honest and admit that some of the re-wilding has been negligence: for years I was overwhelmed by single-parenting and going back to school and then getting an apartment in the city for work and not being able to get back to the house on weekends while my son was a teen and in trouble. Nature, like teenagers, can be very quick about taking advantage of a turned back, and the sumacs snuck in fast. I have been sad to see some of the more delicate perennials disappear under hardier, spreading plants that need a firmer gardener’s hand. But there have been gifts too.

yellow flower and insect

This and most photos in this post by Roy, who loves yellow flowers. My flower photos are currently lost.

The wildflowers I love even more than the planted perennials. I adore the violets and forget-me-knots of spring, the tall and elegant Queen Anne’s Lace, the daisies and black-eyed Susans reminiscent of my childhood summers. There are countless other flowers blooming in my unweeded lawn and the unmown lower meadow. I don’t know all their names—they have been lost now in our grass-obsessed suburban culture. How wonderful this world would be if we cared enough for these wildflowers to recognise and name them all, even the tiniest! And to give them space to grow and feed the pollinating bees and butterflies! Instead we mow everything down to a deathly monoculture of dull, dull grass.

tall flowers

Overgrowing the patio.

But here, I am spoiled with flowers.

So what is the lesson they have taught me? Flowers blessed with perfect conditions –just the right amount of sun and rain, just the right type of soil, the right temperatures during day and night, thanks to where they are planted or where their seeds were sown– will put out an abundance of perfect blooms. Sometimes they flourish unmolested. Sometimes they are attacked by pests and become imperfect. Sometimes they disappear overnight, grazed upon by hungry groundhogs or deer. And sometimes, even with the right conditions, some of the blooms are nevertheless misshapen or stunted or never open. Other flowers struggle against all sorts of challenges just because of where they are rooted: too much sun or not enough, flooding rain or drought, competing plants and weeds, poor soil, trampling feet, lawn mowers. I’ve seen some flowers, determined to grow in the lawn, shortening their stems after repeated mowings so the flowers can duck their heads below the mower’s blades. In the long meadow, some will grow taller, struggling to reach high enough for precious sunlight and passing pollinators.

sunny surprise tulips

Some tulips celebrating the spring sunshine!

Each flower also has its own life expectancy. Some bloom only for one glorious day, others for several days, or, like orchids, even weeks. I’ve watched tulips hold their buds tight for weeks during a slow cold spring, waiting for steady sunshine before spreading their petals wide. Each flower, if left uncut to its life cycle, strives only to complete its reproductive mission. Once its pretty fragrance and colour and form have attracted its pollinators, the petals wither and drop while the secret work of gestation takes place with the seed head and fruit forming at the flower’s centre. Each then has its own fascinating strategy for spreading its seeds to hopefully fertile soil. And then it is done.

magnolia print

I have watched the life cycles of so many different flowers in my garden over the years. Sometimes it has been my careless step that has crushed the fragile petals. Sometimes it has been my scissors that have cut the stem, fating the flower to a decorative, infertile life in a vase. Sometimes I’ve tried to be a good gardener and pulled the flowering weeds—often just as pretty to my eye as their cultivated cousins. Still, I am distraught when the roadside flowers are mown down in the country. These days I can hardly bring myself to cut or pull anything; they all seem so precious.

Flowers have reinforced the lesson that life isn’t and never promised to be fair. For some it’s easy, for others it’s not. For some it brings abundance while others struggle with scarcity. Circumstances can change without warning. The easy life can suddenly be beset by hardship; adversity can be happily resolved. And while some live long, for others life is brief, but perhaps still glorious. It is all equally ordinary, equally marvelous. And always changeable.

I’m sad that the season for garden flowers is over now. I don’t want to go back indoors. And I’m ambivalent about going back to store-bought flowers, which are somehow never quite as wonderful as the wild ones, pretty though they are. But if I live past January, I know I will start to yearn for those delicate blooms and have to give in, perhaps with my favourite, a humble pot of crocuses.

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On a Variation of Love

My son Nathan is away overseas on a touring contract. Right now he’s performing on a cruise-style ferry crossing between Stockholm and Helsinki every night. He was dating when he left, but he knew a long-distance relationship wouldn’t work, despite some strong feelings. At twenty though, he is capable of falling in love on short order. So it wasn’t long before he was dating a sweet young Finnish woman. Though this relationship was bound to end with this part of the tour, last week he informed me that it was already over. As we talked about it, he said he was coming to terms with the fact that it would be next to impossible for him to have a real relationship for the foreseeable future, since he is likely to be touring until he retires from performance.

This doesn’t really suit him; he was a boy who preferred the stability of a long-term girlfriend, and had always been strongly attached and faithful to those he had. However, since he is but twenty and affectionate and fun-loving, already he is telling me about his lively and varied dating life with other women crossing the Baltic. I wonder how to respond to this as a mother. I don’t want him to have a string of meaningless one or two-night stands, especially with risks of STDs and impregnation. I also don’t want him to be lonely, nor repeatedly heartbroken by short-lived romances.


His brother and I had been talking about how Nathan has the opportunity to meet so many different people, from so many different countries, in his touring lifestyle, and how interesting this could be. We noted how much he could learn about life if he listened to other peoples’ stories. For instance, Nathan told me about a cheerful new friend on the boat who shared the hours-long story of his harrowing journey from Syria to Sweden, leading Nathan (who refuses to follow the news) to reflect on the state of the world as well as on the human resilience. Certainly our relationships do not have to be extended to be meaningful or to teach us something worthwhile.

Not that I recommend them, but even brief sexual encounters can be meaningful. Just because we will not see a particular person again does not mean we cannot fully respect them. We can honour the intimate gift they are willing to share with us –a gift that, beyond pleasure, might include attention, comfort, acceptance– and give back. Though it is crucial to have appropriate expectations, it is possible also to bring love to such encounters.

One of the most valuable lessons I have learned in life is that I can bring love to all my relationships no matter what their nature. It is my spiritual practice to try to do this — though what I usually get is a spiritual lesson in humility when I so often forget or fail! Even a stranger passing by on the street can be given love with a simple smile (see my post on smiles for more on this!). In my last years as a teacher, I tried to teach from a place of love and met each new class with my heart full. This is a love charged with empathy for our shared humanity — all our suffering and hopes. That sort of love can be a part of one-night stand too.

So this is what I want my son to know and remember when I’m no longer here to talk these things through with him. Along with my usual exhortation to use condoms!, I want him to bring love to every encounter, whether he has fallen in love or not. Then these relationships, regardless of their duration, won’t leave his heart empty. Rather, they can be a source of joyful sharing, connection, tenderness. They may even be opportunities for learning and growth. I know he wants and I certainly hope he ultimately has a healthy long-term relationship. But in the meantime, I hope this period of his life is not just fun and adventurous but meaningful. I hope he learns to bring love to every moment he shares with another, whether stranger, friend, or lover. I hope we all learn this.

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Ask Me Anything Invitation

question mark

It’s your turn! I’ve posted all my and Oliver’s answers to the college class’s questions about dying, so now I invite you to ask your own questions if there’s anything at all you’re curious about. You don’t have to worry about propriety or anything else: I won’t be offended. You can ask in a comment here or on the blog, or in a private message through facebook if you’re shy. I’ll keep the questions anonymous.

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Ask Me Anything Repost: Oliver’s Answers

Here are Oliver’s answers to the questions a class of college students in a course called Death and Dying had for him about his mom being near death. I was so proud of his courage, generosity, and thoughtfulness in writing this.
Oliver's birthday Staynor
What were your initial thoughts when you found out?
I thought about the kind of life she had lived up until that point – a life of striving to be kind, to be at one with nature, to be good to her body. It felt like a particularly shitty kind of irony that she would get such a ruthless disease.
Then I thought about all of the things that she would miss – my graduation, becoming a grandmother, mine and my brother’s creative, intellectual, and career accomplishments, guiding us through all of the stages of adulthood, being cared for and surrounded by love and family and nature in her old age. It was the single greatest moment of loss that I have ever felt, and I expect that they are the things that will make me miss her most.
I thought about all of the things that I wanted to do as soon as she was out of the hospital, all of the things that felt most important.
There was a lot of crying all around, and laughter, too.
How long did it take you to accept it?
This one might sound a bit weird and is where the story probably starts to diverge from what people are used to when they think/hear about dying people and their loved ones.
I think that once I had wrapped my head around her medical situation, acceptance seemed like the only path, so that’s the path that I walked. It’s hard to say whether that took minutes or hours, the order of things can get a bit scrambled.
Accepting it didn’t mean that I was done feeling sad, that I didn’t need to be close to her and my brother and the rest of our family, that I wasn’t still shaken by all of it. Accepting it simply meant accepting that there was no way she was going to live much longer, whether that meant weeks or months (at the time it felt like it might really just be weeks). I think that this was an important step because it informed my thoughts and my behavior from that point on – I wasn’t going to live in denial, or with some foolish optimism that things would just be ok. My mom was dying and I was going to make sure we got the most out of the time we had left.
How has your life changed?
I could answer this in two ways.

On the surface, my life isn’t terribly different, at least not yet. I finished my semester at school, I worked all summer, and I’m about to be back in school again for the fall. I see my mom and her family more than I used to, up from maybe once a week to two or three times a week, and sometimes for a day or two at a time instead of a couple of hours.

On a more philosophical level, I’ve had just about the most in-your-face reminder that a person can get that there are no guarantees in life. We all know that we could fall terminally ill or be mortally injured at any time, but it’s not useful to live in fear of that, so it seems like most of us don’t think about it too much, preferring instead to live life with the assumption that it will be long and fulfilling.

I don’t live in fear of death, but I do live with a renewed respect for it, or at least I’m trying. What does that mean, practically? It means that I try to be more deliberate in my decision making, especially when it comes to deciding how I’ll be spending my time. Whether it’s dinner plans or a year-long job contract, I try to give the decision the time it deserves so that I can make sure that my choice is one that will lead to fulfillment and enrichment. Knowing in my heart that I’m doing things that matter to me, right now, allows me to be comfortable with the knowledge that death may not be far off.
How did this change your relationship with your mom?

We’ve always had a strong mother-son relationship. In the years since I moved out (a little over 5 years ago), she’s also become one of my closest friends, so I don’t know if I can say that it’s made us any more or less close.

I obviously feel an urgency to spend time with her and our family, to have as many of the important conversations that we hadn’t already had, to revisit some of the things that have stood out as positive moments in our lives together. That reflection has probably given me the opportunity to feel some more pointed gratitude towards the many amazing things that she’s done for me in the years since my birth, or my conception, even.

bus - color corrected

Oliver and Susan last June in a San Francisco streetcar.

Do you have any regrets about your relationship with your mother?

Absolutely, though it’s hard to think of many specifics.We’ve had almost 25 years together and as much as people tell me how wonderful I was as a kid and how painless I was as a teenager, I know that I was far from perfect. Quietly stealing away from the house with my little brother when we were very young. Driving her to frustration and nagging by putting off chores or other responsibilities (she hated nagging/yelling – who wouldn’t?). Moments of blind anger or frustration as a teen. Some lapses of judgment that ended up bringing her (and my father) true parental distress.

I know I’ve probably expressed regret/apologized for all of those numerous times, but just for good measure – I’m sorry, mom.
How has all of this changed how you think about life and death?
To my mother’s dismay at the time, death was something that preoccupied me for what feels like the better part of my childhood (that kind of remembering can be deceptive, but I trust it here, I think). That preoccupation took a back seat to more pressing concerns as I started to grow into prepubescence, but I don’t think the reality of death was ever far away and remained a source of angst and distress if it lingered too long. Death (my own or a loved one’s) was probably my greatest fear. Now? As trying as this has been and continues to be for me and for all of us, the rest of my life hasn’t fallen apart. I think that for the first time, death, whether it be my own or someone else’s, feels like something that I can handle.
What’s your advice for other young people going through something like this?
Try and be honest with yourself, and with the people around you, if you can. Be honest about what you fear, your grief, your confusion, your happiness. Whatever it is you’re going through on the inside, this is the last chance you’ll have to share that with whoever it is you’re losing, and the last chance you’ll have to hear what they’re going through, too.
How do you cope with day-to-day struggles?
In pretty much the same way I always have. I think that I may be reading more books, watching more Netflix, and playing more games. Maybe that’s a bit of escapism? Processing all of this can be exhausting. I think it’s ok to need a bit of time where you can focus on other things, especially in a non-work capacity.
Is it hard to see your mother in pain?
Of course. This is the person who raised me and cared for me whenever I was sick or hurt. It’s hard not to feel frustrated that I can’t do much for hers, but I’m lucky in that, for the most part, her medications keep her comfortable.
What was your initial reaction to “the death project”?

She had hit such a stride professionally in recent years, it was nice to know that she had found an outlet for her creativity and insight, for all of the brilliant thinking she’d been taking the time to do about life and death.It’s also been nice because I haven’t had to explain to everyone what her situation is, or how we’re all dealing with it. I think that her being so open makes it easier for people to know where we’re at and how to interact with us, which is great because I’ve heard a lot of stories now about people feeling deserted in times of tragedy because people aren’t sure what to say. That would be hard. 

How do you think it has changed this process for yourself and those around you?

I think that it helps to have it all out there. It doesn’t leave much room for denial or false hope, and it’s a comfort knowing that anyone who’s heard about her condition has probably read some or all of the blog.

See my answer to the previous question for more on this.
Are there challenges that you face now that you didn’t before?
I don’t think so. Not outside of the obvious emotional ones, at least.
What are your beliefs about what happens to us when we die?
I’ve spent a lot of time talking to my mom about this, so I could write a lot here. I’ll try to keep it reasonable.
I don’t believe in any kind of afterlife, religious or otherwise. I don’t believe that our consciousness can survive outside of our brains, and I know that our brains don’t do much without oxygen and electricity and all the rest. I don’t believe in reincarnation. I don’t believe in a “soul” in the traditional sense.

My understanding of those things is that they are necessary for a lot of us because without them, it’s very hard to answer questions like “why am I here?”, “why does anything matter?”, “where did I come from?” – the real existential kickers.

I’ve come to my own conclusions here, and they essentially come down to embracing as fully as possible the reality that the moment our consciousness begins is the product of all that happened in the universe up until that point and that over the course of our lifetimes, every day, every second, every moment, we are doing things that are affecting the course that the universe will take, however slightly. In that way what we do in this life lives on long after our conscious time has come to an end and the molecules in our bodies have drifted far apart.

What are your expectations for when she eventually dies?
All I really expect for certain is that it will be unexpected. It will be my first and only time losing a mother, though, so I can make a pretty safe guess and say that it will bring a lot of feelings, that it may be difficult to focus on anything else for a time, and that I and so many others will have lost something that can never be replaced.
How have you prepared yourself for that eventuality?
By doing my best to ensure that I don’t give myself anything to regret in the meantime. What that means exactly is probably best explained by some of the other answers here.
Can we really be prepared for something like that? 
I don’t think so.
How do you imagine you will relate to her once she’s dead? 

I won’t be relating to her, unfortunately. That’s hard to think about.

I will, however, be relating to all of the love that she has given me, all of the wisdom I’ve tried to learn from her, all of the memories I will have of her, to the people and places and things that will always remind me of her.

What is the last thing you would like to do with your mom before she dies?
Be close to her.
Other thoughts and feelings?
I love you, mom.
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Ask Me Anything #10: Staying Positive

This is the last question from the college class, and it’s an important one.

How do you stay positive? Don’t you ever think this is unfair, or ask why me?

I do believe that our attitudes are, to a considerable degree, a choice. I could certainly wallow in self-pity, but that wouldn’t be a very wise use of my remaining time. I’d much rather enjoy every moment I can! I have never thought this was unfair because I already knew that life is not fair. Funny that we never complain of unfairness when it goes the other way! I lived with enormous gratitude before I got sick because I knew I had more than my fair share of blessings in life. So when I got sick, it simply felt like random bad luck. And I still feel grateful for all the other gifts.

There is a lot of sadness in dying. I’ve done lots of crying, though the tears don’t actually last very long. Really, less than a minute a day, on average. (The rest of my time is pretty cheerful!) Those moments of grief or sadness come when I think of having to give up all I love in life, which is a lot, because I love so much of this wonderful world. This is indeed very hard. But I’ve realised I can turn this around, and instead of thinking of giving up all I cherish, I can think of giving it away, or simply giving.

All of life, but the end of life especially, is an opportunity to give, pass on, or share all that we hold dear. This can be material things, like our favourite clothes or collections, a car or money. It can also be our intellectual or creative accomplishments, such as our ideas or research, the songs we recorded or our poems or drawings, a recipe, or the code we wrote or websites we created, maybe even our comments on social media. I had a friend who died recently, and the mission statement she had developed over many years of caring for children was one of her special gifts.

But even more importantly, it can also be our interpersonal gifts, such as our love, enthusiasm, kindness, gratitude, laughter, listening, encouragement, and compassion. These are all the things we can continue to give to others as long as we are able, and that act of giving is an enormous consolation in the face of death. It is the near-magical transformation of loss into gifts. So instead of grief at giving up so much, we have joy in giving these gifts.

That also means that instead of being focused on ourselves and our suffering and loss, we focus on others and engage in an act of generosity. Not only is this a cure for grief, it is also, if practiced throughout life, a way to avoid regret at the end.

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Ask Me Anything #9: Fear

(This “ask me anything” answer is in response to a class of young college students’ questions.)

What are you most afraid of in dying?

This question came up a lot and in many different ways, and it’s been the hardest one for me to answer. I’m actually not afraid of death or dying. I wasn’t even sure what I’m supposed to be afraid of or why until a friend shared this poem, Aubade by Philip Larkin, which I wrote about a few weeks ago in on the fear of death. I said that I think what most people are actually experiencing is not so much a fear as a dread of death, which to me is different. I can understand dreading death, though I don’t. If you’re suffering from that dread, I want you to know that it is very much possible to overcome it and make peace with death, and I encourage you to start now. Your life will be better for it!

I have found comfort in thinking that so many have gone before me. I always want to add, And they survived! when I say that. Of course they didn’t survive, but I somehow can’t imagine that they aren’t all okay. Everyone of them passed through that gateway at the end of life successfully. I don’t believe there’s a chorus of howling, suffering souls on the other side. So if everyone before me –and that’s a lot of people when you think how many have lived and died on this planet since the beginning, how many are dying even just today– has managed to face death, I’m sure I can be brave enough to do so too. It’s important to note that many, if not most people do reach a state of peace before death.

I also think about how we have all been there before: before our birth and the development of our consciousness, we were in that state, and it was okay then. Some people believe in reincarnation, the continuous transmission of the soul from one body to another. I don’t feel particularly drawn to that idea, nor do I desire to be reborn and start over, or where I left off. But I know there was a time before me, and I am not aware of anything worthy of fear in that non-experience.

In trying to understand this question, I thought that possibly much of the common fear of death comes from religious teachings about a horrific hell. I don’t believe in hell. I don’t believe anything bad will happen after death — even to those who might deserve it!

I think it’s possible the fear of death comes simply from not stopping to look it hard in the face. Perhaps being afraid of death is a bit like being afraid of the dark. Once we turn on the light or look under the bed, we see there is nothing there to fear. So I invite you to sit for a moment with death. Make friends with it. It has a lot to teach us about how to live.

Of course, many people are afraid of pain, and dying –the pre-death part– can entail some physical suffering. But there are now very good medications that can help with pain and other discomforts, so it shouldn’t be that terrible. (See my post on pain and palliative care for more on this.)

The harder part for most of us is emotional pain. Dying means letting go of everything we love in life. (In other posts, including tomorrow’s post on staying positive, I discuss sadness and grief.) Dying also means being confronted with everything we might have been trying to avoid, including relationship issues, unrealised goals, and all sorts of regrets.

Perhaps people fear being tormented by regret when they have run out of time. As young people, you are in the perfect position to avoid this one. You can make choices now that will allow you to live a full and meaningful life. Studies show that it is meaning, not pleasure or status-oriented accomplishments, that lead to life satisfaction. (This article summarizes some findings on this: Meaning versus Happiness.) See my earlier post on regrets, which has been revised and expanded.

So what are we so afraid of? I think possibly we’re not afraid of death: we just don’t want to leave life.

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Ask Me Anything #8: Afterlife

(This “ask me anything” answer is in response to a class of young college students’ questions.)

Do you believe in an afterlife?

I’m not sure about an afterlife. I don’t believe in one absolutely, in that I’m not counting on it, but I do hope for one. There is much we don’t know about this universe, and I think it very possible that there are other dimensions where something like an afterlife might exist. I’m not sure that anything like my individual consciousness will continue in that dimension, but perhaps there will be some sort of connection. That’s what I like to imagine: a sense of connection to everything in the world.

It’s definitely painful to imagine not being connected to those I love, and I think it’s fine to take comfort in a belief that provides for those connections to be maintained in some way. That could be a traditional concept of heaven or angels or something else. Such a belief (as long as it’s not taken to any weird extremes) doesn’t do any harm and can provide real solace for loss in this life. And if it turns out not to be fact and death is just a void, we’ll never know anyway! I do know that others and I myself have experienced communications of a nature that defies explanation, so this kind of belief doesn’t seem unreasonable to me.

I can’t claim to know anything about the afterlife, however. I don’t really think anyone can. We can imagine it, however. And we can have faith in what we or others imagine, if we so choose. That faith is a fine thing that can make our lives happier and soothe us in our grief — though it’s not for everyone.

What I do know –and this truly is not just belief– is that the gifts we give in this life are what confer immortality. Those are the things that live on and continue to affect the lives of others long after we’re gone. Love is the greatest of our immortal aspects. The more love we give, the more immortality! We have to be careful of how we live, since the bad things we put into the world also have a lasting effect. As my son has noted in his Ask Me Anything answers , everything we do in this life, however small, changes the world forever. Just a smile can go on creating positive change well beyond its original moment, for instance. Chances are the good things we do and give will be positive gifts, and the bad things will make the world worse. We have a lot of power to change the world!

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Ask Me Anything #7: Bucket List

(This “ask me anything” answer is in response to a class of young college students’ questions.)

Do you have a bucket list?

No! I’ve always disliked not only the term, but the whole idea. The only things I really wanted to do before I died were the things that I filled my life with: raising my children, having a job that was meaningful to me, and writing. (Writing a book was a more specific goal that I was proud to reach.) I consider myself extremely fortunate to have had the time, the privilege, and the opportunity for all this.

Things like visiting certain parts of the world or having particular adventures feels superficial to me. In fact those things feel rather like one of the symptoms of our consumer culture that leads us to want and collect both things and experiences. Now there are even websites that can tell you what to want with thousands of mostly silly ideas to add to your bucket list—all so you can post the photo or video on Instagram.

Do I sound cynical? I am. Those sorts of things won’t make my life richer or more meaningful, nor bring me peace on my deathbed. In fact they are most likely to create unnecessary wants and disappointment when I fail to check off everything on the list. Besides, making more memories for myself seems pointless: my memories will die with me, after all. We lead meaningful, memorable lives by loving those we are supposed to love and making positive contributions to society. We should definitely have fun along the way, but not by ticking items off a list.

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Ask Me Anything #6: Speaking Up

Do you speak up for yourself more?                     

I actually do speak up for myself a little more than I used to. Since I don’t have much time, I’m less tolerant of people wasting that time with superficial nonsense, insincerity, or bureaucratic details. I’d rather talk about things that are important to others and myself, even though those might not necessarily be deep subjects. Strangely, I’m also more patient in some situations. My goal is to learn to listen much better, fully.

I also had to learn to express my needs much more than I used to because being sick means I need help. I get really annoyed when people offer help I don’t need or incessantly ask if I need anything (even though these are kind offers), but I couldn’t convince my family to stop this without promising that I would ask for help when I needed it. Learning to ask for help was a really hard lesson for me, since I was always an independent, proud, and very energetic person who almost never needed help before. Illness is great at teaching humility!

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Ask Me Anything #5: Regrets

(This “ask me anything” answer is in response to a class of young college students’ questions.)

Do you have any regrets? Or, is there anything you would have done differently in your life if you’d known you’d die at this point?

What would I have done differently? I regret staying in an unhappy marriage for as long as I did. I can’t help feeling that those years were wasted, in one sense–though I of course was occupied with other worthwhile things during that time as well. The energy and effort I put into that relationship was certainly a waste: I was too determined to make it work. I finally learned with my current boyfriend that relationships should not be that hard nor so full of strife. I am glad I finally figured out how to have a healthy relationship and also found the right person to have one with!

If I could go back, I would also make sure I didn’t doubt myself and my gifts so much. (I talk about this in more detail in my post On Giving Gifts.) That means I would put all my energy into what I really wanted to do—which is also what I was good at. I would work really hard at my writing and make sure I found publishers for it too instead of letting myself be discouraged by people telling me it was too hard to succeed. My regret is that I listened to too many negative messages. If I turn that into advice, I’d say figure out what your personal gifts are, then get rid of any self-doubt and work hard (this does take hard work) to make the most of your gifts. That is what you have to offer back to the world.

I most regret that I was unable to find a way to take better care of myself while a single parent so that I could take better care of my children. I know I was often frustrated and stressed from carrying all my responsibilities alone, and my children experienced that as anger. I wasn’t left with much energy for fun and laughter, so their childhoods weren’t as happy as I hoped for them to be. I really wish our society truly made children a priority by providing better support for their parents, especially solo parents. I wish our society were organized differently so families weren’t so isolated and mothers like me so lonely. I know I had too much pride and didn’t ask for help often enough, but truly, there was little help (safe and healthy help) available.

All in all, however, I don’t regret too much because I generally made life choices that were meaningful to me. If anything, I erred on the side of working too hard for the values I believed in rather than in indulging in pleasure or having fun.

But we never really regret doing good in the world–as long as we don’t burn ourselves out. We never regret giving love–as long as that love doesn’t compromise our self-respect. And we rarely regret being kind–unless we expect something in return.


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