The Great Unknown

Then I return to the Great Unknown – this pall of death thrown over our daily lives – and weirdly, at least today, I’m grateful for it.

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April 22, 2018

Michael is finally home from the hospital. There is relief and grief in equal measures, and there is also so much to do.

Two days ago I called Hospice and within 6 hours we had a hospital bed, a commode, a wheel chair, a bath bench, a nurse, a doctor, and morphine. He’s been in so much pain – two days ago it was a “7” on a 10-point scale. Much more than I realized, or that probably anyone realized. The hospital did not give him anything for pain other than Ativan. It would allow him to sleep for a few hours but then his gut pain would waken him again.  Now we have morphine to dim the pain, thank god, and he can truly rest.

He has a large skin tear on his arm from when his Picc line was removed and no matter what we do, it is leaking fluid all over his shirt. Transferring him from his lift chair to the hospital bed was agony. Even with support, he could barely stand. As we moved the chair out of the way, and the bed into place, he was moaning loudly and almost falling from his temporary seat. Getting him into the new bed was terrifying. He couldn’t lift his legs, and when I lifted them he shouted out in pain.

So far each of the three days since he’s been home are filled with tasks, seemingly hundreds of them, and the little tasks never seem to end. Last night I heard him groaning at 3am and I was up giving him morphine and Ativan which allowed him to sleep until 7.

Empty the urinal, clean the container, bring it back. Clean the C-Pap, let it dry, reassemble it. Set up his leg therapy machine and put one swollen leg at a time into it for an hour each time. Get some coffee and food into my belly and empty the dishwasher. Bring a bit of applesauce so that he can eat three spoonfuls of it and be done. Read and answer the most pressing emails. Now he wants some yogurt but a spoonful sets him into gut cramping once again. His pain is a “5.” More morphine. But the pain continues. Add some Ativan. Now I can wash my face, brush my teeth, and get dressed. It’s 10am already! Finally he sleeps and I can write for a few minutes.

As Michael and I deepen into coming to terms with death, I realize we are also deepening into the terms of dying. And the terms of dying are manifold!

Since Michael’s second transplant, he simply hasn’t recovered the way he was supposed to. Of course there’s no actual “supposed to” here. There’s just reality. And the reality is that his gut hasn’t healed yet and he’s in a fair amount of pain. Any food, even water, brings on tremendous gut cramping and a squeezing pressure. Thankfully, morphine makes a huge difference in his level of comfort, and today he eats some broth and yogurt and applesauce — not much, but much better than it’s been.

At this point there is no way to know how sick Michael may become, and there is no real timeline for this sickness – he could live for weeks or months, or even longer. It’s possible that he will recover from his transplant, and that he will return to his pre-transplant state in which he drives the car, shops for groceries, eats very slowly, and spends hours writing and reading. He would still be tired and there are many things he won’t be able to do It’s not been a great life for either one of us, but it’s not unbearable either.

This could be followed by the easiest death – a sudden ventricular arrhythmia. One moment Michael would be existing how he is right now, and then within a heartbeat, he would be dead. It is said to be swift and painless. This is our favorite death scenario but it presupposes that we have some control over how things go down. I’m learning not to believe in that.

Another scenario is that his heart becomes progressively weaker and he eventually dies of heart failure. From what I can tell, this can be a hard, long death. Gradually the heart becomes more and more congested and unable to pump blood adequately. The person becomes weaker and frailer and finally ends up in bed struggling to move and breathe. A difficult death by any standards.

There’s also the heart attack scenario – not painless, but certainly relatively swift. I remember a year ago when Michael talked about a heart attack as a “good end” and how much this upset me at the time. Now I look at it and realize he was right.

Other organs could fail instead and kidney failure is a common way to go in his disease. It is another slow and laborious dying – a decline in functioning on many levels with fatigue, swelling, problems breathing, and increasing toxicity.

Currently, it’s his bowel that is the problem. It is raw and painful and eating is difficult. Perhaps his bowel will never really heal and it will become unable to function. A hard death, but relatively rapid.

Regardless, it’s all fairly grim and I can’t help wondering what Life has in store for both of us.

No matter what, it’s a real balancing act. If Michael goes off chemo, which he is saying he will do, then the disease will likely progress more quickly. But at the same time, he won’t be fighting the side effects of chemotherapy, so there’s a possibility that he’ll actually feel better overall. Or not.

The truth is no one knows. No one can tell us much of anything other than what the latest test results mean at any given time. Would he have a longer life if he stays on chemo? Quite possibly. But the quality of life is low. And maybe the life quality is low no matter what he decides to do. It’s all a trade-off.

We are walking in the Land of the Unknown. There may be sign posts here but we only seem to see them in retrospect. There aren’t any real directions. There’s simply an awareness that a particular path has curved, or made a sharp right angle, or come to an end. We walk a path until it looks like it’s run out, then we look to see which path might have opened before us, and we walk on.

What we’re realizing is that in the Great Unknown, it’s all a dance of maintaining a sense of balance while watching the body become increasingly unbalanced. Trying to find the highest quality of life while one is dying becomes a huge guessing game — seeking the path that leads to a “good” death while knowing that death is the only outcome.

The biggest Unknown for Michael is death itself. His faith is being tested at the most basic level and he’s constantly up against his real experience of the higher spiritual realms versus the fear that there’s just one big Nothingness. He wonders if perhaps all of the meditations and synchronicities and guidance that he’s received are merely manifestations of an active, open, and creative mind.

This vision arises within him from time to time but I always talk about faith, how strong my faith is, and how I know that his faith is just as strong. He knows I am speaking the truth, and it calms him. It calms us both.

“I can feel my body wanting to cling to life,” he says. “It’s my body’s experience that doesn’t want to let go. That, and you. It’s hard to let go of you.” Then, two weeks ago, his body Deva tells him it is ending, tells him that it can’t function much longer. And I tell him I can make it on my own, and I can.

Then I return to the Great Unknown – this pall of death thrown over our daily lives – and weirdly, at least today, I’m grateful for it. I am being taught by Death. It is teaching me about the depths of love; about the unbreakable bond built of truth, compassion, and respect; about the deep comfort of real connection. I know that when I pass, Michael’s spirit will be there to greet me just as I will be there to greet others when they pass.

In the midst of all of this, I realize I am serving the Beloved. I am serving Love Itself. I am enfolded within Its mystery and Its blessings. My heart is so open that I cry over facebook posts, over the look on my husband’s face, over the kindness of a neighbor. He calls me “my love.” He’s never called me this on a continuous basis, but now I am his love. And I cry when I hear him say this.

As with my heart, Michael’s heart is more open than it has ever been, and this is what he came here for! Finally, as the psychic said, he is learning to receive, and he is flooded with gratitude. He cries when I read emails to him, he cries when Hospice shows up with all of their kindness and their bounty, he cries when his son does yet another thoughtful thing such as helping him brush his teeth. It’s all love now, nothing else. It’s all love.

 

Pre-Planning

What I’m really being struck by is the whole idea of being able to “pre-plan” for death. When it actually happens, I have no idea how I’ll respond.

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3/11/2018

Our trip to Florida isn’t anything like I thought it would be. We both hold the fantasy that Michael will magically feel better, that the ocean will buoy us up, that somehow we will recapture our old selves in our shared experience of this magnificent beauty.

In this other environment, this “pattern accelerator” as Michael calls it, almost nothing is as it has been before. I do most things alone because Michael really can’t go with me for our usual hours on the beach – walking, wading, picking up shells. I have to see the reality of the change from this year to our last trip two years ago. And now I see it.

Instead, Michael is sick much of the time. The doctor keeps him on one of his chemo medications and by itself it causes a huge amount of water weight gain. He is heavy and tired and sluggish. It’s a major effort for him to walk to the beach, and all we can really do together is talk, play scrabble, and watch the tube.

This is a real wake-up call! No matter how beautiful it is here, no matter how healing it is to be at the ocean, no matter how much we want things to be the way they once were, they have changed and our old selves are gone. About half way through our month away I open the door to another hard conversation about the future.

The day before we had seen a TED talk in which a man speaks about the American way of death. He says that though virtually everyone wants to die at home, six out of ten people die in the intensive care unit of a hospital. Another three out of ten die in some kind of assisted care facility while only one in ten actually ends up dying at home. Additionally, only one out of a hundred people actually know that they are dying as they die!

This really brought our death plans to the forefront, plans that I thought we’d made but that I realize now we haven’t made at all. The TED talk sits with me most of a sleepless night and I know we have avoided dealing with the painful and necessary stage of “pre-planning.” In the middle of the long night I meditate and know that we have to move forward.

Today I say, “I think it’s time we start to look at what the options are around burial.” I state this with a practiced sense of straight forward confidence, but inside I’m feeling a sense of unreality and fear.

Michael is the kind of person who responds to this suggestion without getting scared or defensive. I know he’s thinking about these same things but he isn’t talking about them. “What do you mean?” he says.

“I think we should contact some funeral homes and see what the options are.”

“OK,” he says. And that’s that. Since I’m the person in our relationship who does much of the online research around death and dying, I start getting information.

This means contacting the local funeral homes about the cheapest and easiest cremation possible, for this is what Michael wants. We’ve been shocked to discover that at one of our local mortuaries even cardboard box cremations run well over many thousands of dollars. But even with this surprise, I can’t help thinking, “Oh well, it’s all part of the process. This is the American way of death.”

The “pattern accelerator” that we’ve always found at this ocean continues to work overtime and we spend the day looking at what to do with ashes, with what remains of Michael after he’s gone. We look at the “Columbarium” in Oakland Cemetery, we think about selling the burial plots we bought 25 years ago since granite markers now seem beside the point. We look at planting a tree from his ashes. I spend several hours looking at online urns, glass art made of cremains, and cremation gemstones.

It’s a huge business, these mementos of a loved one’s passing. I find that for several hours I can let myself be involved in the beautiful gems and the luminous glass art that I can make of Michael’s ashes while he looks at large varieties of online urns. We talk about it and I show him some of the art that’s been made of ashes. It’s all very calm and chummy, even fun, and then suddenly I realize what we’re doing and it all comes crashing down. My heart is thunderstruck by the calamity of loss, by the looming emptiness of his passing.

“It’s all just stuff!” I say, and I start to cry. Michael knows exactly what I mean. He comes over and hugs me and we cry together. It is this being held that is real and raw and true.

But what I’m really being struck by is the whole idea of being able to “pre-plan” for death. We all want to have control, and it actually makes sense to think ahead, to have things done that can get done, to face into what the loss will mean in its small and necessary details.

But can any of us ever really pre-plan for death? I mean, I feel I’ve been preparing myself for a long time now. I’ve seen Michael’s death a thousand times. And I know that he has too. And yet, neither of us has any real idea of what his dying and death will be like. This is only my ego talking, only my ego trying to prepare me for that which is beyond control. And if this time has taught me anything it’s that there is no control over dying and death, and really, not much control over many of the events that happen to us in this life.

I feel my fear scrambling to protect me from the inevitable and I realize that the writing, the art, and the deep conversations are all an attempt to face into, and also to avoid, the pain. But there is no escape. When it actually happens, I have no idea how I’ll respond.

I ask Michael to write his obituary because there are things about him that I don’t know – and I certainly don’t know what he wants to have said about himself after he dies. He spends several days at this, and when I finally read it I know that it is a wonderful remembrance of his life.

So now we have ideas about cremation, about ashes, about obituaries. But there’s really no way I can “plan” for the event of his death, or for that matter, the event of my own. I find myself moving again into the vast realm of not knowing which seems to be the only true place to anchor myself. It’s a hard practice, finding an anchor in the Unknown, but as I keep learning, it’s the only practice worth doing. It forces me to choose to have complete faith in the process that’s unfolding.

I go back to meditation and I’m taken to a wide open field, opaque and yet brightly lit. There is a continuous fountain of evolving energies arising in this openness, unformed and wild. And, paradoxically, there is nothing here but the confrontation with mortality and the absolute certainty of love. In this place I am told that this is how the Mystery awaits us all, a sudden collapse of events bringing an end to the body, a bright loving light guiding the soul into the unknown.

Living with Dying

Now that we have grieved, and only because we have grieved, this day can move forward within feelings of gentleness and peace.

 

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2/22/2018 at Cape San Blas

Received from a friend:

I recall as though it were yesterday seeing Michael on a number of occasions answering a cell phone call from you. It was so touching to see the expression on his face — gentle, loving, happiness.  I recall feeling as though I was witnessing something precious [something that few married couples achieve].  

I will also confide in you something I witnessed sitting in the waiting area one day at Eastwind. You had a very dear moment standing in the hallway in front of an open office door. No one else was present.

There was this sweet moment in which you both kissed gently and hugged briefly with the sun streaming in that window behind you. I have not told anyone because I felt I had accidentally invaded and witnessed a private moment.  That image has never left me and makes me happy to have seen such deep love.

I am living and Michael is dying. It’s the simple and profound truth that we face every day. Of course I’m dying too, but that kind of thought goes nowhere and doesn’t really touch the living reality of our time together.

I can see the dying in his bruised face, his swollen legs, his atrophied muscles, his increasing lethargy. Since we are at the ocean for awhile, we are together all day, so there’s literally no escape from these truths. This means that every day we must face grief yet again. Another fresh dose of sorrow awaits us each morning with its pale insistent face, and whether it is acknowledged then or not, it is sitting there waiting to be seen – the sad, persistent, and inevitable guest in our relationship.

When I awaken there is always a brief time in which the pain isn’t there yet, it hasn’t been realized yet, and I’m simply myself, waking up. It’s such a relief, this brief time of waking, but it is short and soon reality sinks in again.

What I realize is that it’s absolutely necessary to acknowledge this suffering every single day. How I wish I didn’t have to! But I’ve noticed that if I try to ignore it, it doesn’t go away. Rather, it turns into some sort of ugliness or falseness, something unreal.

This means we are truly living with dying. And because of this, I’m seeing that Michael and I are on completely different trajectories – his gradually declining into greater and greater helplessness while mine is working mightily toward greater living. It is hard for me to maintain this within an atmosphere of death and I have to concentrate to keep myself from falling into an exhausted depression, or worse, an angry resentment. It is a daily practice, sometimes a moment to moment practice, of striving toward life and love and liberation. Meanwhile he moves inexorably toward the dual-faced liberation and resignation of dying.

I find myself wishing for his death more often these days. Not out of anger, though anger still sneaks in from time to time, but now the wish is riding in on waves of exhaustion. I’m truly sick of this situation. Sick and tired. But I also know that this time is sacred and that it is teaching me more about love than I ever knew was possible. I keep wondering how much more there is to learn, and then I know that the learning is infinite.

I don’t want to get sick in order to express these feelings. But they are very strong and they need to find words to fulfill them lest they turn into anger or disgust or some kind of distancing diversion. Then I realize that this, too, is love, that this striving toward expression forces me to stay honest, to speak what needs to be spoken, especially when it is hard to speak.

Love is so different from what we think it is, so different from what we’ve read or seen or been told. It’s the daily emergence of all that arises in you and your loved one, and then finding the most compassionate and most truthful way to respond. It’s the encounter with the Beloved, with the deep raw heart of God.

Today I find that Michael is crying and when I speak to him, I am crying too. He says, “I know you will feel relief when I die, and I don’t blame you.” It’s the first time he’s said this and it is such a hard truth but I acknowledge it.

“Yes,” I say, “there will be relief. And there will also be horrible, desperate loss.”

“But you will be free!” he says.

“And so will you,” I say. Now we both hear the truths we are speaking and we cry together. It is the kind of crying that brings real comfort for we have touched each others’ hearts. Now that we have grieved, and only because we have grieved, this day can move forward within feelings of gentleness and peace.

Since neither of us is denying Michael’s death, things are easier in some ways, and more stark. I’m feeling other dimensions of this experience, and the confrontation with the huge abyss of loss allows fear to arise. For a moment, I fear his death, I fear being alone, and more than that, I fear being without him in my life. I’m not sure who I’ll be on my own. I’m not sure that I will be strong, or that I will move through the world and its deep suffering with any kind of grace or calm.

Now I go to the sea for renewal. I find my emotional self stumbling when I’m alone. I stumble and wobble and cry and I wonder how I will face another month or two months or twelve months of this living death. But as I walk, I know I will. And what then? What when he is truly gone?

Far away, I see his familiar figure approaching me on the beach. I’ve been out for an hour and now he makes his slow progress in my direction. But it’s still his very particular silhouette even though it is bent and slow, it is still Michael coming toward me on the beach. How many times have I seen this? How many times has my heart gladdened to see him coming closer until we finally meet? We kiss, more a peck than a kiss, but still, it’s contact. I know there will be a time when this man will no longer come toward me on the beach, and when I say this to him, I find that he is crying along with me, and my heart breaks open once again.

Our friend was so right. She saw these sweet moments, this huge blessing of a life lived with deep love. We meet and once again we are washed clean by an ocean of tears and grief — freed in this wild, beautiful, endless water.

Anger and Bliss

The transformation of each of us takes place at the center, where the suffering is the most intense.

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01/21/2018

Last week we received Michael’s new numbers from the hospital, the numbers that speak to us of progress or lack of progress with his disease. The numbers still aren’t good.

As I take in this new information the usual feelings overwhelm me. I seem to have to work through the same cacophony every time: shock, frustration, resignation, sorrow, and finally, acceptance. But this week is different. This week I feel anger sneaking its snarly little head into the mix, stuck in the crevice between resignation and sorrow. And though anger has been here before, this is an onslaught and it stays with me for several days.

Along with Michael’s quality of life, my life quality has also diminished considerably and I begin to justify my angry stance. “I’m sick of this life we have. I feel like a prisoner. How much longer is this going to go on? What’s he hanging on to? Why can’t he let go? Why can’t he die?” ‘Prisoner’ and ‘die’ are the words that stand out to me and I hear how angry and resentful I am. These are true feelings, but these are not the beautiful feelings. This is how ugly it can get inside a human mind.

After a few days I find my better self and I speak gently with Michael about my anger. In turn, he shares his own version of the darkness, “It’s not fair that I got this illness! It’s taking everything from me. My life has been destroyed. I can’t whistle, I can’t walk the way I used to, my ability to pursue my life has been taken away. My hands are clumsy and eating is a problem. Why don’t I just die? It would be better for everyone if I just died.”

As he speaks I realize that these stories of victimization are understandable and normal. But they are not pretty, and certainly not the way either one of us wants to feel. It is the mind’s way of coping with events that are just too hard and too brutal to grasp and our minds make up all kinds of stories to explain the pain we are in. It takes real effort to witness this mind game and to realize that it doesn’t need to be believed. We are not our thoughts!

To work through the anger and the stories, I have to muster the courage and humility to speak it to Michael. Thankfully, he can hear me. We are good partners, and I am grateful for the gentle ways in which we are treating each other. I’m not saying we haven’t always been kind and respectful, because we have. But it is deeper now because there’s more at stake. We both know this and we both work at this.

As soon as I hear the story I’m telling myself, and once I say it out loud, I realize again that I’m not a victim here. I’m exactly where I should be, and exactly where I’m supposed to be. For what good does it do to believe otherwise?

For instance, if I’m not exactly where I’m supposed to be, then where am I? Where I’m not supposed to be? How can that even be possible? If I’m here, then I’m supposed to be here. It’s just a rule of reality.

Of course that doesn’t mean that I don’t strive toward the Good, strive toward growth and something better, for that striving is infinite and ongoing. But to recognize the Good, it feels to me that first we need to recognize exactly where we are so that we can know in which direction to point ourselves.

At a spiritual level, to find the Good, the only way I can make sense of it is to recognize that every element of reality, in any situation, is here for my potential growth. And I mean every bit of it – including the mean thoughts and feelings I have about my sick husband. If I don’t admit to these feelings, they grow and fester in the dark.

Every moment of this experience is here to show us to ourselves — all the pettiness and compassion and sorrow and love. And maybe the really hard stuff is the most important because not only are the consequences so dire, but the potential for growth is so high! For this is the suffering that most captures our attention.

The great psychologist, Jordan Peterson, talks about the symbolism of the Cross and the Labyrinth. In both of these symbols we travel from the outside toward the center. Peterson says that to understand these symbols, we have to realize that the transformation of each of us takes place at the center, where the suffering is the most intense. In other words, the greater the suffering, the greater the potential for transformation. I see that through this suffering comes the possibility to awaken wisdom and a kind of grace.

The truly remarkable thing to me is that neither one of us has actually “lost it.” Neither one of us has freaked out to the point of losing our integrity or our center. We are not filled with suffering. We recognize it, but it doesn’t own us, and it feels like it’s all just a matter of perspective. We can talk about our anger, a potentially dangerous topic, and we can do it with calm and decency and respect.

The further into the chaos and pain of illness we dive, and the more suffering we endure, the more the potential for transformation shows itself. I see that my anger is an expression of my fear and pain and I can recognize it for what it is — potential for huge growth!

Now, able to be at my best, I forgive myself for my anger. As I do, I see this time as allowing me more clarity than I have ever had, and I literally feel awash in love for myself and others. Similarly, a few nights ago, Michael spent the entire evening in bliss — the entire evening! Both of these experiences feel like a complete miracle to me.

It really is only a matter of perspective, and this level of perspective can be taken by any of us. When we find ourselves suffering, we can dare to face into it, we can dare to know that we are exactly where we are supposed to be, we can dare to be truthful and open. It simply involves taking responsibility for where we find ourselves and for telling the truth. It really is as clear as this.

At this point, Michael knows how I feel, and I know how Michael feels. We know each other’s myriad thoughts and feelings around death and dying. I sense that now anger may be more a part of the mix than it used to be. But even if it is, now I know its face and I’ve heard its speech. It will catch my attention sooner if it comes again. And if it comes,  I know everything is on the table between us, and I can continue to speak what needs to be spoken. What a relief! I have never had the opportunity to be this honest and free before, and I think Michael feels the same.

So weirdly, though grief is in the background of every day, this isn’t just some difficult time in our lives. It is also a time when waves of joy dance within us, when things are more important, when truth is paramount, and when consciousness allows us to rise above these horrors and see them for the human comedy that they truly are.  It is a time for loving each other in a deeper, different way.

For any of us, learning how to be with our suffering is one of the greatest gifts of any crisis. In it, there is real potential for deep recognition of the patterns that have bound us. Today I see that Michael and I are receiving a tremendous opportunity. I realize we are moving more consciously into our suffering and into our hearts. I feel us standing together, witnessing in awe, the huge blessings and mysteries that unfold around death.

Thin Ice

We are completely shocked, completely taken aback. We had no idea that the ice we are skating on is quite this thin.

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December 21, 2017

We meet with our wonderful nurse practitioner once again and after 17 months of treatment she tells us that Michael’s light chain numbers, though slightly lower, are still not in the normal range. She tells us that if they hadn’t gone down, the medical team would have recommended a “salvage transplant.” We are completely shocked, completely taken aback. We had no idea that the ice we are skating on is quite this thin.

What a phrase! A Salvage Transplant. It sounds so industrial, so vehicular. And I guess to some extent the language is actually representing the spiritual understanding. It literally would be a stem cell transplant to salvage the vehicle of the body, the vehicle of the soul. But it sounds harsh and desperate.

We come home in shock and upset. I’m trying to get my head around what another stem cell transplant would be like now that these transplants are done as outpatient procedures. This literally means that Michael would be taken to death’s door once again and that I would be the person at home taking care of him. Michael is remembering that it took him almost a year to truly recover from his first transplant. It’s overwhelming and I am terrified.

All I remember from the last transplant is that it was a time in hell. The idea of going through diapers, and walkers, and sponge baths, and Michael’s horrifying loss of function once again, is utterly frightening. We would have to get help because I truly couldn’t do it alone.

Michael’s white blood count would be taken down to zero and he would be near death, unable to eat, drinking only minimal amounts of water, moaning and sleeping most of the time.

I would be on call 24-hours a day trying to get him to sip water or broth, keeping him warm, monitoring his intake and output, taking his blood pressure and temperature, and keeping him clean and bathed. I would have to quit my work, hire nurses, and get help with all kinds of tasks that I’m simply not strong enough to do. Just getting Michael in and out of the few steps to our house, wheelchair bound, for our daily trips to the hospital, would require more than I can do. If I dropped him, or if he fell, I simply couldn’t pick him up.

I’m realizing that this salvage transplant idea has scared me to the point of complete ungroundedness until today. Once I meditate and accept my feelings of fear and terrible sorrow, I can move on. Finally energy comes flooding through me from crown to feet. It is the energy of this holy day, this Solstice.

This energy allows me to realize we have reached the beginning of the end – or at least the beginning of the end of Michael’s formal medical treatment. I finally say these words to myself today: The beginning of the end. There may be a long middle section, I don’t know, but it’s clear that we have reached a new level of seriousness. And though Michael doesn’t need a salvage transplant this week, I have a strong intuition that it will be offered again in the future.

What does this mean now? We’ve both been thinking about how to live whatever life we’ve got left. It’s the question for anyone our age, and really, and it is the question for all of us all the time. How do we live a good life within whatever restrictions life has placed upon us?

This is the richest ground, this thin ice, upon which we’ve ever stood. Perhaps richness tends to happen more easily within the restricted ground of mortal illness. It compels us to look closely and pay such deep attention. Life and death are literally at stake and we are forced to live in the present moment! There seems to be little effort in this other than a commitment to see and hear what is really going on around us. What a grand and unexpected benefit this is in a crisis — present-centeredness simply happens.

Since it is the Winter Solstice, we both do tarot card readings, trying to see ahead into our murky futures. This is the reading that looks at the movements of energy within us until Spring raises her lovely green head again in March.

My reading was positive though I have to realize that I am blocking my “initiation into the secret doctrine” (The Hierophant) with my sense of being imprisoned by circumstances (8 Swords). In the four cards that represent the self’s pillar, I receive the Sun, 3 of Pentacles, the Devil, and the High Priestess as the outcome.

The message seems clear to me. My heart (the Sun) is shining brightly and my environment is colored by “perfected work.” But then the Devil appears warning against delusion, illusion, and the power of the mind to distort reality. Finally, the High Priestess emerges as the outcome. On the Tree of Life she is the guardian and the guide to the central channel that leads to the Highest High. Oh how I wish to be guided by her! I meditate on her blue light and find peace.

Michael’s reading is more mixed. His enlightenment is present in the Temperance card that appears in the position of the past. And there are other helpful energies along the way, but he is plagued with the same sense of imprisonment that I had (8 Swords) though his appears as the Self card, which seems fitting. The Tower is also in the self pillar indicating some kind of lightning strike, the hand of God reaching out and upending the status quo. His outcome is the 9 of Swords – sleepless nights. We literally laugh out loud as this card is turned. As a natural outgrowth of this process, we’ve had many sleepless nights, and it looks as if these will continue.

Today Michael says, “I probably won’t go through with another transplant. There’s literally no research to support it.” He explains that there is some support for using this second transplant in a related disease but it’s only anecdotal evidence and it’s for people who’ve already had a remission. Michael has never had a remission. All in all, the costs outweigh the benefits. Suddenly I find my first deep breath in days realizing that I’d had no idea how long I’d been holding my breath.

I’m so relieved by Michael’s statement, by his strength, by his good sense, by his willingness to face into whatever comes with courage and truth.

I write to our nurse practitioner about our concerns and she tells me that an outpatient transplant is “optional” and we could still do it as an inpatient procedure. Though neither of us heard this at the time of our appointment, it softens me and I realize we could make it through such a thing again. I tell Michael this and he says, “There’s still no data to support it.” And he’s right.

So, now, for whatever reason, as Winter dawns we are being drawn more deeply into ourselves. It seems very natural. We have arrived on this rich spiritual path to explore what it means to truly live our lives, knowing they can be overturned at any moment.

The ice is thin here, almost like glass, and I see through it into the depths of the water below. It can break at any moment and we can drown. But for now we are learning to skate this slippery path, learning to balance in the cold bracing air, giving ourselves freely to the heartbreak and joy that it means to be fully alive.

Growing Up

Often we are rewarded in this society for giving ourselves up for others. And though this is the partial essence of loving thy neighbor as thyself, it can also turn into a terrible and twisted version of martyrdom.

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“When we tell the truth, we create goodness.” – Jordan Peterson

Lately I’m realizing that Michael’s illness has pushed both of us in ways we would never have otherwise been pushed. Both of us are in some way, finally growing up, finally being the adults we were always meant to be.

In the past week we are both taking care of ourselves pretty well. Michael’s blood sugar coming under control has really helped the situation. He’d been feeling really low, physically exhausted, and his mental attitude had started to decline. He was talking more about dying, and I was thinking about him dying more often.

Once we found out that his chemo drugs had made him diabetic, things started to improve. He’s taking blood sugar medication and watching his diet and he’s feeling much better. Regardless, it was certainly a lesson in how things could be, how the decline into death might take place. Since he is better I can write about it again. At the time, I truly didn’t have the words.

Now that life is more stable, it’s made me think again about Ken Wilber’s recipe for true adulthood. He exhorts us to do four things: Grow Up, Clean Up, Wake Up, and Show Up. It’s a terrific shorthand for a way to think about one’s own level of maturity.

Growing Up is about becoming someone who takes responsibility, who can be counted on, who tells the truth, and who honors their word. It’s simple to write these words, but this is a huge leap in consciousness! It requires the discipline of pointing one’s self toward the good, over and over again. It requires telling the truth as best we can. When we lie to ourselves or others, it makes us weak. And I mean that literally — it makes us fall out of alignment and it weakens our spirits.

To Wake Up is the act of realizing the true nature of one’s essential being. These easy words belie the mountain of thoughts and efforts that lead to this state, but both Michael and I have awakened to some extent. I can feel my own need to continue to grow and stabilize my level of awareness, and Michael is doing the same. Regardless, we are on the path of awakening and we know it.

Showing Up is simple really – it’s the recognition of what is needed by the world and taking the action to do whatever one can to fulfill it. What is needed is usually whatever is right in front of us. It is what is showing up in the present moment that needs our clear attention, and then doing what the world is asking of us in that moment. This can be simple or complicated but it is always about taking an action that leads toward the greater good.

But Cleaning Up – oh my – it’s a long and arduous process of encountering the Shadow parts of ourselves. It is also infinite because the dark unprocessed parts of ourselves are always opening beneath us, beneath our consciousness, always becoming. They show themselves in the dreams, the trances, the unformed chaos beneath our psyches. The great psychologist Carl Jung believed that these shadow parts are the literal key to our vitality and life force, and they are usually deeply hidden from us.

The Shadow is made up of all the parts of us we don’t want to see – the anger, the resentments, the judgments, the fears – all of this never goes away!  And though the Shadow also holds immense creative powers, these are hidden in the depths of our psyches until we have the courage to face into the darkness we are blocking. We can’t escape our Shadows! We can’t “make” them go away. And the more we try, the larger they become.

For what heals the Shadow, what “cleans” it, isn’t an effort to make it go away. Rather it is the willing acceptance and integration of our darkest impulses, our humanness, and our flaws. In other words, we work toward the loving acceptance of who we are in all of our tragedy, our selfishness, our vulnerability, and our fear.

I find that each of us, in our own way is working on these four dimensions of true adulthood. But it’s the Shadow, always the Shadow, the keeps me up at night.

Lately I’ve been seeing our cultural Shadow in the stories of caregiving that I hear around me and I’ve been noticing that the line between the martyr and the saint is a huge ongoing question for me.

Often we are rewarded in this society for giving ourselves up for others. And though this is the partial essence of loving thy neighbor as thyself, it can also turn into a terrible and twisted version of martyrdom. For the saint is walking a path that sacrifices the self in the name of a higher calling while the martyr may be walking the exact same path but at the cost of their own life force and their very soul.

I’ve been hearing about people who have completely put their lives on hold for their sick partner for years and years at a time. These people are held up as examples of how to be a good caregiver in spite of the fact that their own sacred life has been stymied and reduced. I hear these stories and I find my shadowy anger rising within me. “My life is important too!” it shouts at me.

I’ve also heard the stories of those who leave their ailing partner because they can’t deal with the suffering, and these stories are held up as morality lessons, a lesson in how not to be. My Shadow insinuates itself here with visions of escape and fantasies of life alone which immediately leads to feelings of guilt and shame.

Occasionally there are stories of caregivers who have somehow managed to find the middle path – to care for their loved one and to care for themselves but these stories aren’t as common or as vivid. It is the extremes of the caregiving stories that we hear most often. This is the hardest wrestling match, this middle path. It is the one that demands my firm commitment to goodness toward myself and toward Michael, even when this goodness may lead in opposite directions.

Regardless, these stories raise many questions: Have I been kind enough to my husband? Have I been kind enough to myself? Do I need to speak more truth to him? Speak less? Do more? Surely not. Surely? Could I be more loving toward him? Toward myself?

These are not easy questions and there’s no single right answer. In any relationship, whether in sickness or in health, these questions arise — questions of how much to give to another and how much to give to one’s self. Questions of loyalty and care, and just as much, questions of obligation and responsibility.

I’m in a mighty wrestling match with these questions right now, and though I continue to be grown up, continue to show up, and continue to try to find the highest good, the Shadow arises taking me into my most difficult questions about myself and my motives. I’m finding that obligation, loyalty, and self-love often define a very narrow line to walk — the proverbial razor’s edge.

In an effort to quell the Shadow, I tell Michael that I’m trying something new. Today I say that I will assume he is fine unless he tells me differently. He is relieved when I say this. “Well, great!” he says. “It’s about time.” He has witnessed my worry and what he must see as over-protection and he’s glad that I’m giving him more space.

Then I add, “I mean that at every level – physical, emotional, mental, and spiritual. I expect that you will tell me if something is wrong. Otherwise I will assume that everything is ok.” Again he agrees and he seems to understand.

Somehow I feel a new sense of freedom in this! I won’t be mentally chasing Michael to find out how he is. I won’t be constantly wondering and worrying over his situation, or at least I hope I won’t. He will simply tell me. And if this is true, it will be a different way for us to relate to this illness of his – two independent adults, awake and caring companions, openly sharing their very different journeys with honesty and love.

The Labyrinth

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6/29/17

I go to a retreat center for much needed relief. I’m in a hermitage, the small solar-powered straw bale houses set off on a quiet place on the property. I’m immediately struck by the fact that I have chosen to hermit myself away from the hermitage of illness that’s been created by Michael in our home. I am completely burned out.

After I unpack I go to the labyrinth which is close by and for the first time ever, I am blessedly, unrestrainedly, alone. What a gift! As soon as I enter, I begin to weep. Just soft tears, realizing how sad I truly am, as I walk so slowly through this journey of the soul. I ask over and over to know my spiritual path. “Show me my path, show me my path.”

As the twists and turns unfold I am taken into the Eastern quadrant and there I begin to sob, to cry my heart out, alone in these woods, alone on this path. I am desolate with sorrow and loneliness. There’s no other word for it. Desolate. I realize I’m not prepared for how lonely the caregiver in me has become. Once I move into the South I begin to calm and other thoughts enter my mind – thoughts of the mystery of Spirit, thoughts about being taught this deep hard-edged lesson, thoughts about my astrological north node which has always cautioned me that my learning must be about independence.

Then I am in the West. I notice the animal tracks that I’m sharing this path with – deer, rabbits, chipmunks, birds. I notice the small branches that cross the path and instead of removing them I recognize them for what they are – the things which cross the path, the things that mark a brief stop or a need to step over or go around. I move even more slowly now. As I enter the North it becomes a place of recovery, a place for rest in which I am more sure-footed. But as I enter the East again, I am besieged by grief – overwhelming, heart-stopping grief. And again, it begins to abate in the South. I am curious but still crying.

I honor all the sacred directions and the powers they represent. The East – the realm of Air and Thought. The South – the realm of Fire and Spirit. The West – the realm of Water and Emotion, and the North – the realm of Earth and Groundedness. But I am drawn to stop in the West.

In the West, the King of Cups comes to me. I had drawn his card as the outcome for my summer solstice tarot card reading and had been wondering what the lesson is. He is “the fire of water” and his picture is one of a King sitting on a throne that is riding on top of the water. He is not taken under the water, into his emotions, in any way. He recognizes them, feels them, but does not dwell on them. And he holds the paradox of fire and water – Spirit and Emotion – a paradox that is held in balance as he sits on top of his feelings rather than being overwhelmed by them.

By the time I finally reach the Center, it all comes tumbling in. All the disparate parts of the self, all clamoring for attention, for simple recognition. I cry more deeply and then finally, I am calm. I sit for some time and leave the labyrinth without retracing my steps, knowing this is not the holy way, and not caring at the moment, just needing to be moving on, just needing to understand the lessons of the labyrinth.

I realize I have been dwelling in my sad emotions of late. It’s hard not to. There are times when I look at Michael sitting on the couch and I can barely stop myself from crying. His life has become so much smaller – days of reading, writing, meditating, computer surfing, and various distractions of food and TV. He even looks smaller. He’s curved inwardly and his spine is rounded and knobby. His arms are thin and he’s losing strength and grace.

Somehow the lessons of Water and Fire come pouring through me now – “Feel it all,” they say, “feel everything, and then turn it over to Spirit! Let yourself burn in the purifying fire. Let yourself be taken up to heaven and released.”

Outside the labyrinth there is a path called the Cosmic Walk and I decide to take it. There are markers all along the way starting with the appearance of modern humans, then prehistoric peoples, then mammals, then lizards, then sea life, then plant life, then bacteria. All of this occurs within a relatively brief span of the walk and there’s a great walking distance between this and the creation of the earth and the solar system – billions of years. Finally, many billion years later, and many more steps along the path, is the creation of the Milky Way and then all the way out to the Big Bang, or as the walk says, “The Great Flaring Forth.” I love this – the Great Flaring Forth. It reminds me of the Dazzling Dark on the Tree of Life. We are so small in our little lives, our little deaths. I emerge from the walk feeling cleansed and renewed.

I go into the retreat center’s meditation room. Again I am blessed with solitude in this soft silent space. When I emerge I see a prayer book for those who come here, a book to petition God for intercession into our heartsick lives. As I look through it, page after page contains the words, “Prayers for my dear husband….” I catch my breath realizing that countless others have come to this exact place before me with these exact words: prayers for my dear husband. It breaks my heart wide open and I cannot write these words for Michael. Not yet.

I walk the labyrinth alone again the next morning. So slowly. I wonder if I will once again encounter the deep grief of my thoughts in the East. But, remarkably, I don’t. There is a sinking, a swamp to be avoided, but I can walk through it without tears today. Then, unexpectedly, I break down in the West, the place of emotion and realize that maybe this is exactly the right place to break down. Today when I reach the Center, it is very peaceful — steady and calm and full. I walk out in the sacred way this time, unwinding my path from the Center to the beginning, to the end, and feeling the wholeness of this journey.

I go back to the meditation room now, then back to the prayer book. I write: “Prayers for my dear husband, Michael.”