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.

Transplant

I know that he’s just gone deeply inside himself to find the strength needed to get through this. I also know he will become more and more silent as he gets sicker and sicker over the next long days.

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March 26, 2018

Michael’s second transplant has started. There are six bags of stem cells today, and six again tomorrow. But today I am realizing how dangerous this really is. He’s been pre-medicated with Benadryl because of the strong allergic reactions that bodies have to the medium in which the stem cells are preserved.

“Now, you know you need to tell me if you have any heart pain or chest tightness,” the nurse says again. Michael nods but now both the nurse and I are on high alert, watching carefully. Meanwhile Michael has moved into closed-eyed silence and only monosyllabic responses. I should be used to this by now, but I’m not. When he is sick I always feel like I’m being shut out. But I know that he’s just gone deeply inside himself to find the strength needed to get through this. I also know he will become more and more silent as he gets sicker and sicker over the next long days.

Then yesterday we were told that there is flu on this ward. Apparently, there have been deaths from the flu in this hospital but we don’t know if those happened on this ward or not. Regardless, I’m even more cautious now though there’s not much to do but wash my hands a dozen times a day. Mostly, I sit and watch, and today I bring my laptop.

It’s boring really. Tremendously boring and also horrifying. Two days ago he was given a poison that will almost kill him in the next two weeks, and now he’s being given the stem cells that might prolong his life. But even the stem cells have risks and the progress of their input is watched closely, the nurse standing by for the next two hours, carefully monitoring every sign of life.

Michael’s throat has started itching and though that doesn’t sound like much, the nurse immediately backs off on the rate of the stem cell drip. It’s a sign of an allergic response and they’re not taking any chances.

This is good! During the last transplant 19 months ago, I am at my youngest son’s wedding. It is a tremendously hard decision to make but the nurses assure me that Michael is in good hands and I choose to see my son marry his beautiful wife. I just can’t miss this milestone event and Michael strongly encourages me to go. He knows exactly how important it is to me to be there.

In the middle of the rehearsal dinner I get a text from Michael saying that they just placed him on oxygen. I am terrified.

I go outside and stand on a cliff above the California ocean and cry unrestrainedly. “I should be there, I should be there,” is the refrain in my mind. But I’m not. I’m 2000 miles away and I don’t know what’s going on. I get another text that he’s gotten so much fluid with the transplant that it’s become hard for him to breathe. I go back into the dinner and my other son’s wife explains it to me. She’s a nurse and she can see how upset I am. “It’s not a big deal,” she says, “people go on oxygen all the time. The fluid pressed against his lungs and made it hard for him to breathe. They’re doing the right thing. He’ll be ok.”

I am much calmer but I’m also anxious to be back home, to see my husband with my own eyes, to know he is truly ok. I’m only gone for 3 days but it feels like a lifetime. What a comedy of timing! My son’s wedding, my husband’s transplant. Could it get much more dramatic? And then I realize that of course it could. Michael could die from this.

Now as the stem cells continue to drip into his arm, I tell the nurse about his previous transplant reaction, about the use of fluid that compromised his oxygen intake. The nurse pays careful attention to what I’m saying, checks his oxygen saturation, and it seems this will not happen again.

After a few hours, it’s done. There haven’t been any really bad reactions and now Michael is sleeping. The stem cells are in and making their way to the bone marrow, to the possibility of building new life within his sick one.

But I also know what’s coming. In about a week, Michael will literally be standing at death’s door once again. His white blood cell count will go to zero. And then, if things go well, the stem cells become engrafted and take over for the stem cells that are no longer healthy. Once this happens he gradually comes back from his visit to the underworld, hopefully coming back stronger than the last time.

Transplant day is counted as day zero here on the ward. It is celebrated as a birthday and helium balloons are given out in an effort to cheer up a procedure that is anything but cheery. Really, it’s not a birth day, but it is the possibility for a rebirth. And no matter which way it goes, it’s the end of the line for us. It marks a rebirth into a new life, or into the next life. And either way, both of us are looking forward to going home.

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.

Coming to Terms

He has realized he is dying and he is telling people this. I am so relieved for there’s a whole layer of resistance and denial that no longer needs to exist, a whole layer of energy that no longer needs to be expended in the name of hope.

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Feb 11, 2018

In the past three days our trip to the ocean has worked its magic on us once again. Michael calls this place a “pattern accelerator,” and it’s true, for he has realized he is dying and he is telling people this. So now we have moved into another round of grief and acceptance and yet again, more grief.  I am so relieved for there’s a whole layer of resistance and denial that no longer needs to exist, a whole layer of energy that no longer needs to be expended in the name of hope.

For many months, I’ve known this was coming. At some level I knew it at the beginning. Michael says that I’ve felt this because of my father’s death when I was 13. Early on he believed that my unwillingness to jump wholeheartedly onto the Hope Train was an effect of this childhood trauma. And though there’s some truth in this, truth that there is childhood pain that is so deep it’s almost impossible to heal, there’s always been the sense for me that this disease he’s gotten is the harbinger of the end of his life.

So for such a long time, I have danced around his denial and his hope. I wanted to support the hope but without supporting a kind of wishing that didn’t feel real to me. Each month we’ve gone into the next round of blood tests, each month watching and waiting for the numbers that would tell us whether things were getting better. And each month I’d feel us clinging just a bit, wanting the numbers to be something that they aren’t, then watching as that same energy got redirected into the next month’s numbers.

Now we’re not expecting the numbers to become normal. Now we’re expecting that Michael is moving toward some kind of death at some unknown time. But knowing this is coming, and really knowing this is coming, are two different things, two different layers of acceptance and meaning.

For several years my left eye has been dryer than the right and it tears more often and more easily. In the past year this has gotten noticeably worse. As a mind-body psychologist, I pay attention to these bodily metaphors, my own and others’. I know these metaphors are always telling us something about ourselves, and usually something important, something that we haven’t totally grasped or haven’t totally healed.

In metaphorical language, the left side of the body represents the Feminine, the right side the Masculine. It’s a pretty easy metaphor really. My feminine self is crying while my masculine self is seeing clearly and I realize that both are important and both are true — for there is real grief and there is clear seeing.

Today I went to a place on the beach that we call The Point. It’s a good long hike and Michael drops me off near an entry point and will pick me up later so that he can have the car. He is too tired for this walk and he is sad not to be able to take it with me. I pack a bunch of tissues assuming I will be crying on this beautiful and solitary stretch of sand. It’s the first time I’ve gone here alone.

Before it was always Michael and me – walking, holding hands, watching the waves and the thousands of different birds that make this part of the world their home – the pelicans, seagulls, plovers, terns, herons, and skimmers. It’s a special place for us and it’s bittersweet to be doing it alone. But it’s still transcendently beautiful and the sacredness of the place overtakes me. I meditate and do yoga and pray and sing songs of worship to the ocean. For a time, I am healed and surprisingly, I don’t cry.

As I walk the long path back to the road where I hope that Michael will meet me I realize that I’m going to be doing a lot of things alone — things that I used to do with him. My left eye tears up over this but my right eye remains clear. “Oh well,” I think, “It’s just the way it is. Accept it, accept it.” I know I am sad but I also know I am deeply blessed to be walking on this beach, to be praying in this sacred water, to be loving this holy place.

But I’ve walked a long way and now I’m tired. I’ve been out for almost 3 hours and my legs are hurting, the wind is picking up, and there’s rain blowing in. Finally, I make it to a long boardwalk leading to a place we’ve stayed before. It’s closer than the boardwalk to our current house which is another mile down the road and I’m ready to come in. I text him to tell him where I am, but since the phone service is terrible here, I can’t trust that our texts will reach each other. I’m not sure if he’ll be able to find me.

My feet are crusted with sand and they hurt from walking on seashells and the hard, cheap and splinter-laden wood of this boardwalk. I sit down to stretch my socks on over my filthy toes, engrossed in my struggle with gritty sand, tight socks and old shoes. Across the way, on a parallel walk, a man calls out, “Is that you?”

I look up and it is Michael! “You found me!” I say joyously. And as my heart leaps with joy, just as suddenly I am besieged by sorrow. I realize that someday Michael won’t be here to find me, and I wonder if anyone will ever look for me in this way again. Now deep wracking sobs move through me with a grief that is almost unbearable. But all of me is crying now, and that is a good thing. There’s no distance from this grief, no escape from this pain, for he will be gone and I will be here without him. And now at last, I can fully face into this.

The good thing, the truly remarkable thing, is that for the first time we can talk about it. We can grieve wholeheartedly. There’s no more hiding from the truth, no temporizing, no denial. We don’t know how much time we’ve got left, but we know it’s limited.

I didn’t know I’d have to face yet another level of acceptance. I should have known, but I didn’t. I’m realizing that each new layer of acceptance must also mean a new layer of grief. For when we accept something we don’t want to accept, aren’t we really just learning to live with some sort of loss? Even though I’ve known this death was coming for some time, now that I really know it, I find myself stumbling around it, shakily trying to find my feet, trying to hold steady. I am learning over and over again to accept the unacceptable.

I remember reading a sentence about grief in one of the many medical rooms we’ve sat in throughout this 19 months of illness. It had one of those rainbow and sunshine backgrounds with the words: “Grief is just love that hasn’t let go yet.” But then I wonder how we ever truly let go of a much-loved person.

All I know for sure is that I can’t let go yet. This man is still very much alive, and though his body is dying, his soul is growing, and I am here to witness that growth. Now I embrace this new reality. Both my eyes are open and both are crying, my whole heart is bursting, and I am alive with grief and clarity.

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.