My elderly father-in-law (I’ll call him Mon Pere) is living in the light of two very different worlds right now. In the first, he pursues everything he enjoys with great flair. He goes out dancing with his ladylove, attends continuing education classes at the University, tells his same beloved, off-color jokes over and over again, and takes long, contemplative walks by the river every afternoon. In the second, he lives with metastatic cancer. Mon Pere is what’s known as a character, and he navigates both worlds with the same idiosyncratic grace.
His cancer is slow growing and if it weren’t for a preventive screening test some time ago, he wouldn’t have even known it was there until recently. Because of his age at the time of discovery, and because the likeliest outcome of treatment would have been to erode his treasured quality of life, he declined anything aggressive and has instead lived pretty much the same life he lived before, only with the uncomfortable knowledge that a force he could neither see, feel, nor resist was relentlessly growing inside him.
This burden of helpless knowing strikes me as unnecessary and a little cruel but, as far as I can tell, Mon Pere has no regrets. All our conversations eventually drift to the topic of how grateful he is for the life he’s led and the deep pleasure he now takes in his daily routines. For all I know, without the useless knowledge of his cancer over the years, he might not be feeling this heightened sense of gratitude and pleasure. Perhaps that’s what makes the added burden of fear he’s also had to live with worthwhile.
Mon Pere has been, all his life, every year, an avid traveler but that, too, is changing. This morning he refused an invitation from the hubster to go on a fishing trip to Maine, emotionally disclosing that, these days, he longs more for the simple charms of home. There’s a creeping pain to be dealt with and instinct is whispering it’s time to rein in the adventures.
I’m moved and fascinated by the unconscious courage he displays. He’s unusual in that he’s always been willing to talk about his own death as well as the life he’s determined to live on the last leg of his journey there. He’s been clear with us all that, for him, living fully is more important than living longer. While he’s prepared to surrender to the naturally occurring indignities of dying, he’s determined to avoid any additional medically inspired ones, and so far he’s shown an uncanny instinct for sniffing out and avoiding most of the interventions that might extend-but-strip his life simultaneously.
I admit I’ve been tracking his choices closely over the years, and I’ve learned a lot from him. The truth is that, like him, we all dream of living fully until it’s time to die. The problem is our healthcare system isn’t designed for that. It’s not designed to allow dying at all. It’s designed to keep everyone alive as long as medically possible and, while that’s a decided boon during the healthy years, its lopsided effort at the end is now churning up so much turbulence that a simple death has become a rare event indeed. I’ve looked into the haunted eyes of too many surviving loved ones and seen the same regret there; They never wanted to die like that.
Everyone agrees there’s a problem, and there are many good efforts afoot to change it, but in the meantime passing through the medical system during aging is a lot like swimming downriver into ever-increasing amounts of flotsam and jetsam. There’s so much to get snagged on that it requires an almost impossible degree of knowledge and native cunning to navigate through it all unscathed.
But Mon Pere is doing surprisingly well. He’s like an old trout, refusing to rise to the fluttering lures cast over him, sinking lower into the water instead. He’s not susceptible to the whispered promise of extra time because, as he so often says, Been there, done that, bought the t-shirt. He doesn’t have a bucket list left of things still to do because he already lived his whole life doing them. What he craves now are the infinitely dear, small pleasures of life. To walk and learn, laugh and dance, savoring the wonder of each new day.
This gradual slowing reminds me of the other elders I worked with and how they, too, started to bend and change under the weight of this approaching mystery. It often seemed like they were nearing something I couldn’t see, something with an immense gravitational pull to it, as though the closer they circled in, the denser and heavier they became.
I used to think of death itself as a null and empty void…a dark nothingness, an absence-of…with physical life perched on one side and, hopefully, some kind of spiritual life on the other. But that was before I spent time working around its edges, before I discovered the strange, luminous field this final Unknown generates. Some have called it the light of dying, which I’ve also glimpsed, but at the very end, in those last hours before a person dies, it took on an additional dimension. It felt like an immense current flowing through the home, as if some subtler kind of electromagnetic field was in motion. I noticed everyone’s emotions, muscle contractions, and breath seemed to unconsciously synchronize with it, and my own response was the same each time. My skin would tingle and hair rise, my heart would first fill with a vast ache and then suddenly contract and break in one sharp blow. And out of the pain it would delicately unfold again like some kind of pulsing sea anemone, opening up its thousand waving tentacles to grope the passing current…for what, I still don’t know.
The experience was reassuring but disorienting, too. There were a few times after returning to my car when I had to just sit and grip the steering wheel for a while, dazed and bemused by how sharp and crystalline everything looked, as if I was gazing out through a long-smeared window that had finally been cleaned, before the strange afterglow would fade enough for me to drive safely away.
I don’t think of death as an empty void so much anymore. I’m not sure what I think instead, I can’t make make sense out of something I’ve only glimpsed, but the thought of it makes me feel curious, calm but a little nervous, and breathless.
Mon Pere is hardly dying yet, he may not for years, but he’s slowing. Turning. Caught in the outermost edges of that pull now and commencing its widest spiral. He’s a little sad sometimes, a little scared, but mostly he’s head over heels in love with his life, as he should be. As we all should be.
This is the most amazing ride.
copyright Dia Osborn 2011
The Odd and Unmentionable 
Consider for a moment, ‘the light’ – what if it were our own light, our spirit light – visable for all to see like a beacon turned on to find it’s way home to light, of like.
Good read Dia, thanks!
Laurie!! Happy New Year! I adored that advent calendar you sent us…every morning started with a little shot of Christmas cheer and it was surprising how happy it’s influence was. Thank you so much. I needed it.
And yes, the light. With all my long history of meditation and other spiritual pursuits, I encountered things with the dying that made me question and rethink everything. For me, it didn’t feel like anyone was going anywhere so much as that they were being revealed for what they’d always been…extraordinarily beautiful and quite big. It was such a surprise. 🙂 That would be a great conversation to have someday.
As always, a wonderful post. I’m tempted to reblog this, simply because it is so well thought out, written, and it expresses my philosophy so perfectly.
“He doesn’t have a bucket list left of things still to do because he already lived his whole life doing them. What he craves now are the infinitely dear, small pleasures of life.”
So perfect.
He’s been an amazing teacher for all this, Linda, taking everything I’ve contemplated/mused/studied/wondered about for an actual test run in the field. How To Live And Die. Practicum 101.
I like that reblog feature you used on Sandra’s post about rubbish. Where is it? Under Posts or Menus or what? You’ve figured out SO much more about the technicalities than I have!
This is as beautiful as it is full of soul. Thank you
Hey Kent! Thanks for leaving a comment. It’s always great to get an idea what people are thinking with some of the strange things I write. 🙂
Dia, this is just what was needed to help me appreciate where my father is right now in his life. At almost 96 years of age and living more or less ‘on his own’ in his own house, he is quite content with his daily rituals and ‘system’ he has set up. His abilities are fading in front of us and he is aware that he is at that time in his life that things are changing rapidly. He has good days coping with these changes and bad days as well. He is scared sometimes as well as still being the ‘alpha male’ in the family who can still give sound and good advice to his family. It is all very amazing to me.
Thanks for this and also for dropping by my blog today and commenting. It is a pleasure to me.
Your dad is still living on his own at 96! He must be amazing and (I’m guessing) stubborn? Independence at that age usually doesn’t happen without some effort of will. 🙂 It’s a little disconcerting when the rate of decline with aging starts to pick up after a certain point. And curious, how unique each person’s timing is in getting around to it. I’ve seen it start in a person as early as their 60’s or, like your father, much later. From my observations, the biggest challenge for most elders is learning how to navigate the shift back into vulnerability again.
I love your blog, Jim. I know I should leave more comments but in any case it’s always soothing and insightful to drop by.
Great writing Dia. Thank you for sharing your life with us.
Dia, that was simply beautifu and it brings many things to mind. The first reminder fo me is to live in the moment and enjoy life’s simple great joys. When I was a younger man I always thought “life will be better when…” I graduate from college, or I get a better job, or I get married, or when I have kids…
Now I realize I was missing life at times when I went through those times of life…because that is all life is…a journey not a destination.
My next thought is about people having the right to take their own life when as your father-in-law states, “living fully is more important than living longer”…I couldn’t agree more. There is a wonderful documentary on this, “How to die in Oregon.”
And being from Michigan, I am quite familiar with Dr. Kevorkian and his quest to legalize phyiscian assisted suicide like they depict in the above documentary. It is time to end the suffering when the person no longer wants to suffer.
Thank you for what you do and this wonderful piece. You might consider sending it in to the NY Times and other publications as a letter to the editor.
Hey Dave– Mon Pere is currently living in the wonder of “right now” but of course he didn’t always. I believe that’s one of the great gifts of aging; as we gradually grow past all the goals and ambitions that drove our earlier lives, we can finally see past them. Finally see everything we’ve learned and all we’ve become over the course of our journey. It’s a very age appropriate thing to do. When we’re younger we usually have more responsibilities and burdens to deal with which makes it much harder to relax like that yet. It’s like the difference in perspective of someone who’s just starting to hike the trail that winds up to the top of the mountain, and the perspective of someone who’s arrived and is standing up there admiring the view. The first has to keep his head down to watch the trail and can’t afford to stop and relax yet, because there’s still work to do. The second can finally rest and enjoy the fruits of his labor. The tasks are just different, neither is wrong. This is not to say of course that one can’t stop here and there to admire the different views along the way. 🙂
It’s interesting that you thought I was talking about assisted suicide when I said “living fully is more important than living longer.” That’s actually not what I was referring to. As far as I know Mon Pere has no intention of ending his life early, he loves it too much. What he’s trying to avoid is getting tangled up in the net of all the various medical interventions designed to prolong life at the end. He really doesn’t want to wind up in a hospital bed in ICU wrapped in tubing with machines breathing for him. Rightly so. He’s assuming that once you start chasing the butterflies of technological promises, it’s very difficult to stop; one intervention tends to leads to the next, to the next, to the next, so he’s simply refusing to take the first step. He wants to die simply and peacefully in his own bed of natural causes, surrounded by those that love him, and he’s consciously and courageously creating that scenario for himself.
I used to feel like physician assisted suicide was a desirable option, a right that everyone should have, but my perspective changed during the years I worked with hospice. Several of my co-workers experienced the same shift, which we all kind of wondered at. Turns out when we were confronted with the reality of a couple of patients who wanted to go that route, it didn’t feel anywhere near as simple and pure as it had seemed in theory. It actually has a darker underbelly to it…just like everything else of course. Surprise, surprise. There’s actually another option that weaves an interesting path through the two extremes of drawing out a disease to it’s greatest possible length and ending things abruptly. It’s what the Oregon organization (they used to be called the Hemlock Society but I can’t remember what their name is now) recommended to one of our patients here in Idaho and the course he ultimately pursued. I’ve been meaning to do a post about this whole topic one of these days but so far haven’t been courageous enough to wade in to something that’s bound to be controversial. I’ll have to get over it I suppose. 🙂
Thanks for stopping by and taking the time to leave a thoughtful, provocative comment Dave! I’d love to see a conversation develop around this.
I’m very curious about this middle path, Dia! I understand why you would hesitate to draw controversy, but I have faith in your ability to frame the story as “it is what it is.” So far all of the comments I’ve seen here are from level-headed readers. Hopefully no one will take issue with a documentary.
I’ve always loved those middle paths: the twilight between day and night, the grey between black and white, the humans who live between the extremes. 🙂
Ah yes. The “between” worlds…I love them, too. That’s probably why I loved the world of the dying so much…it’s very much a place where one thing is fast turning into something else.
As for the “middle path”…it’s what’s commonly referred to in end-of-life care circles as “refusal of nutrition and hydration” or RNH; a perfectly legal choice available to everyone, but one that is still widely misunderstood. The extreme right tends to reject it as another form of suicide, while the extreme left tends to feel that it’s still undignified. The truth contains a little of each of course (isn’t that just like truth?) but then far, far more as well. Probably the sanest and most beautiful analysis of RNH to date is by Dr. Ira Byock (one of the most compassionate and dedicated hospice doctors in the field.) Here’s a link. It was written back in 1995 but is just as pertinent today as it was back then. Much of it refers to a clinical study on comfort levels of patients who have refused nutrition and/or hydration and is written in medicalese, but if you skip to the last section titled Ethical and clinically effective response to requests for assistance in suicide , he talks about the ethical dimensions of the choice.
To me, as a once-hospice caregiver myself, RNH offers several profound gifts, most of which are not available with assisted suicide: 1) it’s a relatively comfortable way to die, 2) both the choice AND its fulfillment remain completely within the control of the person who desires it, 3) no one else is required to live with the burden of actively ending a life, 4) it generally requires less time than the waiting periods imposed by assisted dying legislation, 5) it “requires no mandated psychiatric evaluations, attorneys, court decisions or legislation”, and 5) it allows a more gradual dying process, leaving open the possibility that some unexpected value and meaning might still be found in the remaining life.
Like I said, even the Oregon organization that helps people with assisted suicide promoted RNH as the most desirable choice to the patient I worked with. He ultimately followed that guidance. So that’s the middle path I was referring to. I’m curious to know what you think?
Another giant problem with assisted suicide, is that despite all the safeguards, the patient might agree to it under duress. For example, a family can give subtle signals to the patient that s/he is a financial and emotional burden. Another separate issue is that oftentimes hospice care can deal with any pain issues. I appreciate your review of how stopping nutrition and liquids can actually be superior to assisted suicide, especially in the spiritual arena. Karen (hospice chaplain)