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.

 

The Dim Fog of Grief

We should have to stare death in the face, we should know its horrifying look, its ominous smell, its moaning sound as well as we can. Our whole life has been leading to this moment!

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April 17, 2018

My son Darby just left after five days of being here, five days of grieving, five days of relief. For the first time I am able to grieve with someone who knows Michael in the very odd particularity and intimacy of family life, someone who has loved him almost as long as I have.

As Darby leaves, I am suddenly so deeply exhausted that I can barely stand or walk. I do what needs to be done but I’m in a fog. As Darby says, “the dim fog of grief.” I eat, I walk, I do yoga, I hold the dog, I try to sleep, and mostly I visit Michael in the wretched hospital. But all of it is done within a grey cloud of awareness. Only grief and love burst through the cloud and bring heaving sobs of sorrow and joy and pain. For Michael is dying.

He may not die now, or even soon, but he is certainly dying. And now he knows this every bit as much as I have known it these many months.

As soon as Darby walks into Michael’s hospital room for the first time, he starts to cry. It is hard to see him like this but that’s how it is for someone who hasn’t seen him in awhile. Michael says, “I’m fine!” And simultaneously, Darby and I both say, “No, you’re not!” Oh how denial just slips back in so easily.

But it is stark and obvious. Michael’s body has been ravaged by this disease and he looks so ill. There’s no hiding from any of it now. He is dying.

At dinner that night with Darby, he starts talking about Michael. “He was such a good husband to you,” says Darby. “Yes, he was,” I say. Suddenly I notice, “We’re talking about him in the past tense!” It startles both of us but we also know the truth.

A week ago, Michael panicked. He was feeling particularly sick, particularly weak and exhausted, with seemingly endless diarrhea. He panics and truly realizes that he is dying. Then I panic too. When I get home, Darby calls, and I transfer my panic to him and he decides to visit. Then at Michael’s request, I call his son Adrian as well, and Adrian also decides to visit. In our panic, I find that we are calling in the troops.

That night as I meditate, a miracle occurs. I see heaven, or some muted version of heaven that appears inside of me, and suddenly I am filled with peace. I speak with Michael about our panic and about the miracle that occurred. And, miraculously, at the same time, he reports that he had a similar vision. We talk about the place that he is going to, about how beautiful it is, about how he has longed for it his whole life. Now, both of us are calm, allowing things to be as they are.

Yesterday Michael plays songs that he wants played at his Celebration of Life and Darby and Michael and I sit in his hospital room and cry together. One refrain comes through over and over, “I ain’t got no home in this world anymore.”

And it’s true. That’s what happens when the body begins its inevitable disintegration. There’s no earthly home for the soul anymore.

At times this is just horrible and exquisite torture. My feelings are so strong these days – so full of love for those who are helping us, so full of love for Michael who is clearly dying, and so full of love for what life is teaching me.

I see my husband’s body struggling for life, I see how decimated it is, how weak and painful and exhausted it is. He is so weak now. He can make it to the bathroom for more diarrhea but he has to hold onto something to do it. He gets back to bed and he is breathless, and his heart is beating hard and fast. He can only talk a little bit before he’s too tired to keep going. Sometimes when I see how his body is falling apart I find myself struggling to maintain my sense of compassion. A dying body can be an ugly and terrifying thing. I can see that he could rally through this particular crisis but he truly looks the worst I’ve ever seen him.

Then, almost simultaneously, I feel infinite compassion and tenderness for this dear old body that has changed so much, this body that is disintegrating. And for the life that is disintegrating within it.

And under everything, there is such a deep sense of sorrow and love. I have never cried so much or so deeply in my life and I am in agony. I’m also exhausted and I can feel myself burning out. I meditate, do yoga, see a good friend, and I rally again. But then I wonder how Michael can rally in the dim fog of his hospital room.

Having Darby here has made everything more real. The family is gathering to say goodbye. I feel the very real love that is coming toward me, toward Michael, toward us. And still, it’s not enough. This sorrow feels endless.

But again, once I cry, I can go more deeply into myself and finally, I feel a sense of the underlying rightness of it all. Now the dim fog clears at last. But it takes gut-level sobbing for me to get to this level of understanding. In order to truly know the hidden wisdom, the real tears must be cried.

At these times I realize that Michael’s disintegration is exactly what is needed for his metamorphosis to take place. For that’s what death is all about. It’s the last transformation. I can feel the patterns that are shifting and transforming, and I know that it is right to have this intensity of feeling now, that this level of transformation demands tears and dying and death in order for it to happen — for him and for me. This is it! This is where the meaning of a life, and of our life together, can be seen and felt and honored. And this is where it is all ending.

Then I actually know, at least for a time, that Michael’s death has an absolute goodness around it. He’s done what he set out to do, and to be, in this life. And we’ve done what we set out to do, and to be, as a couple. Those roles are crumbling away. And though I will miss him forever, I can feel that we’re almost done.

There is no escape from this. And really, there shouldn’t be! We should have to stare death in the face, we should know its horrifying look, its ominous smell, its moaning sound as well as we can. Our whole life has been leading to this moment! Whether it’s the death of a much-loved one, or one’s own death. We need to look!

These are the defining moments of a life and it’s tremendously sad, but only death can bring us to this level of clarity, this depth of wisdom, this agony of love. It’s the last and biggest transformation possible.

The wheel is turning. It is a huge wheel, and it is always turning. We blink in and out of this life never really knowing what we’ve come for or what we’ve accomplished. And only at the end can we be blessed with seeing it and maybe, if we’re lucky, we arrive at last to an understanding of the grace that has guided us all along.

Hope

Michael’s current stem cell transplant has made him terribly ill. It’s a precarious time that is filled with the mind-numbing boredom of longterm hospitalization punctuated by moments of horror. And no matter what I hope, it doesn’t change a thing!

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April 3, 2018

“You’ve got to keep your hope alive!” These are the words from a woman I know who has asked about Michael’s transplant. I had just told her that my hope around these medical treatments just isn’t there anymore. She, too, has struggled with a sick loved one and in their case, her hope has paid off.

As I walked away from her I realized that my first reaction was guilt for not being “hopeful” enough, that I’m being a bad spouse by not jumping on the Hope Train once again. But I’ve ridden that train, and I rode it hard during the first transplant, during the first chemo, during the subsequent chemo, and on and on. It’s taken me nowhere but into hopelessness. All of which makes me begin to question the underlying assumption that hope is good, is helpful, or is even necessary.

One thing I’m realizing is that hope is always about the future! We hope for some kind of better outcome and all hope is constructed on wishes for positive change in the nebulous time that is not now. Let me repeat that, it’s not Now! And finally, I’ve learned that the only time that really exists is this present moment. This one. The one that you’re using to read these words.

For the truth is, nothing is real other than this moment. Everything else is memory about the past or fantasy about the future. Most of the time we don’t stop to question the assumption about the goodness of hope, the necessity to feel that the future will be better. But what I’ve noticed is that hope knocks me out of the present moment and into a place of wishing, and if that wishing doesn’t come true, then what? Have I not hoped well enough? Or is Michael’s own hope somehow tainted? What happens when hoping just doesn’t work?

We believe we are seeding the future with our current thoughts. And certainly, it is important to have positive expectancy for the future. Things could get pretty dire if we fail to believe that our current sacrifices aren’t creating a better future down the road. But it is also important, and really more important, to have positive expectancy for the moment in which we find ourselves. For if we do not love this moment, this very moment, we are doomed.

Michael’s current stem cell transplant has made him terribly ill. His white count has plummeted and now he has no white blood cells to protect him from infection. I watch his heart monitor as he receives a platelet transfusion — sometimes its beats are even, sometimes they jump all over the place. It’s a precarious time that is filled with the mind-numbing boredom of longterm hospitalization punctuated by moments of horror. And no matter what I hope, it doesn’t change a thing!

So is my lack of hope a problem? For the opposite of hope is certainly a kind of despair, and god knows that none of us want to sink into despair. But perhaps this is a false dichotomy. Perhaps there are unnamed options outside of hope and despair. Perhaps there is a middle ground that has nothing to do with hope.

At this point, I’m searching fiercely for that middle ground. It’s located somewhere in a sense of the immediate and the neutral, located in a radical sense of accepting everything just as it is. It is not negativity or nihilism or denial. Rather it is a firm stance toward the goodness of the moment, toward an understanding that this moment is holy, that this moment is where it’s all happening, that this moment is the only thing we’ve got! And in this moment, the meaning is made.

The last line of Emily’s poem is the most mysterious for me: “and never in extremity it asked a crumb of me.” This doesn’t feel like the hope that I’ve nurtured in myself during these long months of Michael’s illness. For my hope has asked me for many crumbs. It has asked me to tend to this thing with feathers in the face of devastating disappointment. It has asked me to  believe in a treatment that hasn’t worked, that hasn’t flown. Or maybe I just haven’t understood hope deeply enough, maybe I’ve clung to it too hard. But for me, I feel that Emily is speaking of Faith, not Hope.

I find that my faith is now anchored in believing that everything that is happening is for the Highest Good. This is a very hard faith to practice in the face of the death and destruction all of us can see around us now. It is a very hard faith to practice as one test after another comes back showing no progress in Michael’s illness. It is a very hard faith to practice as I watch my husband trying to take in some broth as his white blood count hovers at zero, and horrible diarrhea becomes the result. But it is the only faith I can muster — the faith that whether we can understand it or not, there is a force in the Universe that is always moving toward the highest evolutionary principle, toward the Highest Good.

In this Universal scheme we are less than a blink of God’s eye. Our individual lives are an experiment in evolution and ultimately, a test of our ability to love. The circumstances of this testing are more complex and manifold than any of us can ever grasp, but always we are held in love. This becomes my Faith in the underlying goodness of our lives, and in our deaths. And this faith is unshakable.

At this point, I’ve given up on hope and it feels like I’m taking a breath of sanity in an insane situation. I don’t believe in it anymore. I’ve clung to it and now I know that this is a mistake. Hope still flies through my mind many times a day, but I have learned to watch her feathery flutterings and come back to faith instead. It feels more solid and more real.

I still find myself hoping that Michael can continue to take in liquids, that he can continue to find his way through this maze of drugs and nausea and extreme exhaustion. But I also know that my hoping doesn’t change anything here, that in fact it can lead to hopelessness and loss of heart.

Instead I watch him eat the little bit that he can eat. I listen when he complains about his stomach and his gut. I respond to his moans. I touch him softly on the arm to let him know I’m here. And over and over, I let go of the future, let go of hope, and dwell in the love and faith that lies between us now in this desperate and sacred place.

 

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.

Life Purpose

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November 21, 2017

The new numbers just came back. The numbers that indicate if Michael’s new drug, the “last” drug, is working. And at least so far, it isn’t. The numbers remain stubbornly outside of the normal range and are almost exactly what they were on the previous drug which also wasn’t working.

Of course the word from the medical community is to give it time. The hope is that there is a cumulative effect and Michael has been told to stay on this new drug for a year. Regardless, both of our minds can’t help buzzing with this news, can’t help projecting ahead into the unknown, can’t help wondering what our next step is if there’s no improvement in the several months ahead.

“Maybe I’ve completed my purpose,” Michael says this to me as we sit on the couch facing each other to talk about the future once again. “I mean, maybe my soul purpose is done.”

“Maybe,” I say, “but I don’t know.”

He says this without self-pity. It’s just a statement of fact. The things he used to do, and the things he is doing now, are drying up. They’re not quite flowing. Naturally we both take this as a sign. For one reason or another, the flow of reality is not lining up with Michael’s efforts. This is unusual for him and it catches our attention.

He says, “It seems to me it’s a message. Things aren’t working for me.”

I can tell he really is seeing this clearly. It’s not about feeling sorry for himself. He’s simply noticing the flow of events, noticing where the flow is blocked and he’s not taking it personally.

“So what do you think that means?” I ask.

“It may mean my soul purpose is completed. It may mean I’m supposed to die.”

So now the entire question of one’s soul purpose presents itself at a deeper level and it opens up a huge area of inquiry. How do we even know what our life purpose is? And if it is completed, which in itself seems almost impossible to know, does that mean it is time to die? Can it ever truly be finished? Aren’t some of the greater purposes infinite in nature? Aren’t they always somewhat of a mystery?

Michael had a clear soul purpose before this illness: he was a healer and a teacher and he has done these things. But those purposes have been taken away and it’s likely they won’t return. And everyone who retires is more or less facing this same question – what is my purpose if I’m not doing what I’ve always done? How do I share myself in a way that supports my sense of purpose, in a way that furthers the greater good? And those who are ill may face an especially difficult question: What is my purpose if I’m no longer even able to do what I would like to do?

Add to this the interesting fact that Michael’s spiritual awakening occurred just a few months prior to his diagnosis, and the question becomes even more complicated. Was his life purpose simply to wake up? And then what? Die?

I believe our life purpose is something that can be discovered but it’s far more mysterious than our careers, or our partners, or our hobbies. Some people are born knowing what their purpose is in life. But most of us aren’t that fortunate and we have to stumble around while trying to figure it out, and sometimes we never do.

In my stumbling I’m learning that we don’t move through life, life moves through us. And in that movement we encounter exactly what life wants from us whether we know it or not. Life has its own agenda! And we may, or may not, ever know what it is. In fact, it’s possible that we don’t have to accomplish any particular thing in order for our purpose to be lived. It’s not about what we do, it’s about who we are.

So who is Michael now? He is a man who is facing death with as much dignity and acceptance as he can gather. He takes in the latest medical numbers with relative calm and with a sense of surrender to the greater Mystery.

Who am I? I am the woman watching the man facing death and trying to deal with the many impossible feelings that arise as I do so, trying to face all of it with humility, love, and raw truth. Elucidating this process seems to be my purpose right now.

One thing I’ve discovered for sure is that it doesn’t matter how many mental gyrations I go through – it still hurts. Each new layer of illness is another loss, another adjustment, another tragedy, and it does no good to deny this. There is a huge amount of suffering in watching this drama unfold and there is no way around it. And, ultimately, thank god for it!

Through these events I am being given the immense gift of time. For time is letting me work through this process and is allowing me to feel more than I’ve felt in years. Time is giving my mind the space to thrive on thoughts and words that I never knew were in me. Time is allowing tremendous spiritual richness in the encounter with death and dying. And finally, even though I am deeply sad, in some profound way, time is making me grateful for sorrow.

For all of it is true! All the feelings, all the thoughts, all the ambivalence, and all the events. The revelation, over and over, is that this is the truth of life and death. This is the way it is. And even this level of suffering and loss is worth it. I’m learning that as harsh as it is, the experience of life and death is worth the suffering, for within it we have the opportunity to find our best and highest selves.

If life purpose is actually about who we are rather than what we do, it seems to me that all we can really do is take the next step, the one that is right in front of us, and take it with as much integrity, and presence, and grace as we can muster. Each step leads to another, and with each step we learn to trust the process of simply Being more and more deeply. And even though sometimes a step plunges us into chaos, chaos can become our greatest teacher.

We can learn to do this dance of life with all of its missteps, gracelessness, and errors. We can learn to trust that if we fully do the dance, with every part of our being, in the end we will be led to know why we’ve come here. For ultimately, this feels like it is life’s purpose — to live  as fully and deeply as we dare.

Death’s Lessons

No matter when it happens, Michael is on his way to a good death in which he is loved and cared for and spiritually awake.

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September 21, 2017

We got Michael’s new numbers three days ago and they aren’t looking good. They’re about the same as last month’s numbers which are still far outside of the normal range. In effect it looks as if the current treatment regimen isn’t doing what it is supposed to do. This is a blow I literally feel in my gut and my heart – things just aren’t getting better.

Our cheerful new Indian doctor tells us he wants Michael on the same protocol for another year. I can’t stop myself and I say, “Another year?!!” He immediately backs off to another 6 months – and I mentally thank god that he’s amenable to negotiation. But even another 6 months of this treatment that isn’t working seems absurd to me and I begin to say so, “What’s the point of continuing to pursue a treatment that appears to have plateaued?” He hears this and he shakes his head and he says, “You are right! It does not make sense.”

Then Michael says the magic words. He says, “We are healthcare professionals and we understand the protocols you are operating under.” Our doctor immediately relaxes and smiles. We are healthcare professionals. We understand. Suddenly the whole scenario becomes one human being talking with other human beings. It is such a relief! He tells us, “You can ask me anything and I will tell you the truth.” So now we really get down to business.

The doctor wants Michael to stay on the current protocol for another month. If there are still no substantial changes then he will change one of the medications for another one that is in the same class of drugs for two months. If that doesn’t make a difference, we go to the last real option – a drug that has been very effective for amyloidosis treatment. Of course I am wondering why we didn’t go to this drug long ago but the doctor tells us it’s really the option that they like to “save for last.”

The other reality is that insurance won’t pay for this drug unless Michael has “failed” the other protocols. It’s ridiculous. Our bill is already way over $800,000. I mean, how much money could have gotten “saved” by following this plan? Thankfully, Medicare has paid the bulk of this or there literally would be no way that we could continue with any kind of treatment.

We leave the doctor to go for the chemotherapy appointment feeling that we’ve made some kind of progress, though I’m not really sure what it is. Still, both of us are feeling a bit lighter. Once we’re in the chemo suite Michael says, “You know, in spite of everything, I’m still feeling positive.”

I look at him, not wanting to cry, and I say, “At this point, I’m just struggling to stay neutral,” and I turn away before he can see how much emotion is behind this statement. I really don’t want to rain on his parade, such as it is, but I have to tell the truth.

Then he says, “I’m actually pretty happy, you know. I’m doing OK,” and I believe him. I remember a conversation with one of my sons who said he thinks it’s easier for the one who is dying than it is for those who are left behind. At the time I agreed with him, and in many instances, I still do. No matter when it happens, Michael is on his way to a good death in which he is loved and cared for and spiritually awake.

I’ve been noticing lately that there are two Michaels obviously in play now – the mortal and the immortal, one facing toward life, the other facing toward death. It’s quite interesting because they can both show up within a few moments of each other, even within the same sentence sometimes. The immortal Michael is absolutely ready for death. He knows it’s coming, he’s not afraid, and in some way, he welcomes it. He knows that to be conscious without a body is one of the most beautiful of gifts.

The mortal Michael staunchly, stoically, and fiercely clings to life. He says he still loves life, he’s feeling optimistic about his prognosis, and he’s not really suffering except physically. Now sentences begin with, “ I’m really tired and it’s feeling hard to go on today, but I’m also really fine.” And both of these things are true.

As we sit for the long wait for the chemotherapy to be delivered, we talk about the new numbers. Michael’s kidney function is normal. This is good news because it means that for whatever reason, the amyloids are not being deposited in his kidneys and probably he won’t need dialysis. I say that I’m guessing it’s his heart that is taking the brunt of the deposits and he agrees. But he says that even that is good because it would mean a quick death – a heart attack.

My gut gets queasy, and a feeling of dizziness overtakes me. I excuse myself to go for a walk. A heart attack is “good.” I understand what he’s saying but what sort of a situation are we in that makes a heart attack good? I’m trying to take this in and I go outside to the small garden that is beyond the chemo area. I need a place to sit, a quiet place, and of course these places are very hard to come by at this huge hospital. I walk the length of the tall black fence that lines the garden only to find that there is a strong lock on the gate that leads to benches and plantings and some semblance of peace. Oh well. I continue walking until I find a tree in this barren place, one of the few, that I can sit under to feel the ground again.

I sit on the earth more deeply now and meditate in order to still the torrent of emotions within. “Here is the truth,” I hear myself say, “My husband is seriously ill and so far, not really getting better. Sink into the earth. Accept this hard truth. Just feel it, allow it in fully. Let it be.” It’s amazing to me how often this is the lesson in life, in any situation in life – just learning to accept reality exactly as it is.

Of course this is much easier said than done. I can point to other losses in my life – my father’s death at an early age, my divorce, my children leaving home, a few good friends who have gone in other directions – all of this has hurt. And now it feels like all of these losses have been leading to this one. This is the deep grief of life, the loss of loved ones, the loss of our own life, the deepest sorrows. And all of us must face it in some way or another.

As I am sitting I realize with stark intensity that when Michael dies, it is likely that I will never be loved so well again. There will never again be someone who has cared for me for 34 years. There will never again be someone who knows me in this particular and intricate depth. And this is true with any death of a long-held and deeply loved one.

But there is also a raw intensity of beauty in all of this. There is the potent and insistent knowing that life is ephemeral, passes quickly, and is gone. Death reminds us that connection to others is the One True Thing. And the truly appalling thing is that we all know this! We’ve all lost someone and we know the aching emptiness of that loss and yet, somehow, we forget. Over and over, we forget death’s lesson.

As I continue to sit I hear a voice from my innermost being, “Open wide to all of it,” it says. “Let your heart be broken so deeply that it will never close again. This is the greatest gift of death. Receive it now, receive it with your entire being. Allow yourself to be broken open all the way, and always, always be guided by love.”