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.

Screen Shot 2018-04-22 at 9.16.54 AM

 

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!

Screen Shot 2018-03-14 at 11.45.04 AM

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.

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.

 

Screen Shot 2018-02-24 at 10.16.05 AM

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.

Screen Shot 2018-02-11 at 7.05.33 PM

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.

Screen Shot 2018-01-13 at 12.12.54 PM

 

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.

Growing Up

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

Screen Shot 2017-11-19 at 10.13.56 AM

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Soul Contract

Our contracts aren’t meant to keep us safe and secure. They are meant to constantly throw us out onto the ragged edge of growth and change.

 

October 22, 2017Screen Shot 2017-10-24 at 4.09.04 PM

I’ve been thinking about soul contracts lately. I look at soul contracts as agreements our souls make in order to grow in this lifetime. In it the soul agrees to its karmic lessons, experiences, and circumstances for its best chance at advancement of consciousness.

I’m seeing that Michael and I have made quite a contract together. Of course I can only see this contract in retrospect, and god knows, there may be more to come.

But here’s what I know so far: Clearly Michael and I were to meet and help each other out of marriages that were not happy for either of us. Clearly, we were to marry and raise three children. Clearly, we were to create a truly unique healing center together. Clearly, I was to have a potentially fatal disease from which I was to recover. Clearly, he was to care for me during this time, and then for some time after. Clearly, we were to encounter experiences that would lead both of us more deeply into spirit and higher consciousness. Clearly, once Michael became enlightened he was to be diagnosed with a mortal illness. And now clearly, I am to take care of him until he dies.

What a contract! There’s so much suffering within it, and so much potential for growth and love.

Part of what I’ve been doing is watching how this contract is unfolding and what my grief is teaching me over these long fifteen months.

First, grief comes in waves of watery energy. Anyone who has ever experienced a big loss knows this. Sometimes it comes gently, a soft rain of sadness, a pulling down but not under. Sometimes, unexpected, unplanned, and completely uncontrollable waves of grief spiral through me and suddenly I find myself lost in a storm of sorrowful realizations. Other times grief is so potent that only wracking sobs and an inchoate sense of falling are possible. These are the times in which I wonder if I will be pulled under to drown in a pain that is inconsolable and too huge to hold. But I do not drown and I am learning to hold.

Second, rather than stages of grief, it feels like layers of grief that reveal a new look into the depths of sorrow, despair, and fear. Sometimes I still find myself at the initial layer of shocked incomprehension. Other times I’ve plunged so deeply into sorrow that I’ve found a kind of peace. And then I can come all the way back up to the layer of denial and confusion.

I’ve been hoping to find the intersection of sorrow and peace in all of this for I know this search is part of my soul’s contract, part of my necessary growth. I’ve found that it does exist but I need to cry to find it. Once I’ve opened my heart to myself, then tears are followed by peace and by a deeper knowing of the nature of suffering and true compassion. But I must open my heart to myself for this to happen.

Lately I’ve realized that in spite of thinking that I was handling grief about as well as anyone can, what I was actually doing early on was protecting myself with fantasy and a kind of mean-eyed clarity. Fantasies of what my future would be like began to take up a fair amount of my mind-time. How old will I be when Michael dies? How will I want to be living my life? Where will I want to live? Will I get married again? What kind of man will I be looking for?

At the same time, thoughts about our marriage and the holes in our relationship became more prominent. And like all marriages, ours is not perfect. There are co-dependencies that have developed that don’t feel healthy and that have made me question this relationship on and off for a number of years. I spent months inwardly chasing fantasies while looking for some kind of security in an inherently insecure situation.

The hell of it is that we all have these codependent relationships, at least until we really grow up. Not all of them are unhealthy, of course, and any long term relationship will have worked out various methods of getting needs met – rituals and patterns that can be life-sustaining or life-denying. At some point, and maybe too often, we end up needing something from someone we love to the point of compromising ourselves in order to get it.

This is what it feels like to me. Soon, the compromises begin to erode one’s self-reliance and one’s self-respect, and eventually, one’s essence. And even when the erosion is very subtle, it’s still part of the scene.

For instance, very unconsciously I remained chronically fatigued for years so that Michael would take care of me. In turn he got to feel secure because I needed him so much. Please hear that I am not blaming him for this in the least! This pattern plays way back into my childhood, and even though I know and understand this pattern, I couldn’t stop feeling physically worn out.

So interestingly, when Michael became truly ill, I began to be truly well. I’ve been struck by this on many occasions, and I know other people have too. I still have many of the symptoms I had before, I’m still sensitive in ways I sometimes wish I wasn’t, I’m still tired sometimes, but I don’t feel sick any more! And weirdly enough, our pattern was so well entrenched that even with knowing every in and out of it, every devious little twist and turn of it, we were powerless to stop it until Michael got sick. It took something this dire to shake us out of a pattern that wasn’t nourishing either of us!

Michael also knows about this pattern, of course, because it’s been a running commentary between us over the years – me bringing it up and him inwardly groaning while outwardly taking it on. And now we both see the changes that have been wrought in these past fifteen months. Mostly, we aren’t stuck in the old ways anymore – he knows I love him for things deeper than his care of me. And I know that I can take care of myself.

Of course, there’s been a high cost for this. From time to time, I’m overwhelmed with grief and responsibility, and Michael is coping with debilitating illness and chemotherapy side effects. We’re both looking at tremendous losses but of very different sorts. What a price to pay for freedom. What a contract!

But ultimately, the greatest freedom I’ve found is that grief isn’t anything to fear. It’s harsh and sad and sometimes overwhelmingly empty. But the thing that has to be accepted with grief is that there is no protection! There is no safety in this physical life except the full acceptance of what it really is. That’s it. Everyone you love will either leave you or you will leave them. There’s no way around it.

Our contracts aren’t meant to keep us safe and secure. They are meant to constantly throw us out onto the ragged edge of growth and change. There is nothing to hold on to here but love.

And though I still feel fear, I know it is an illusion. I can’t hide in fantasies about the future or resentments about the past. To really love, I have to risk everything and at last come to peace with this complete lack of safety. This means opening my heart with absolute certainty that it’s going to be broken. Now I truly know that I am staring death in the face, and that I am going to lose.

If I really accept this, really surrender to this ongoing practice, then I do find peace or rather, peace finds me – and that is the other wisdom that has come. I can chase peace with a desperate determination but I won’t find it by chasing it. It simply arises in a moment of grace and then there it is.

For that is what is happening now. Michael and I have found a new peace together. It’s not romantic or sexual at all – that has been stripped away. Instead, we’re often just sitting together, talking, and holding hands. It’s the way our soul contract currently expresses itself and we both know that we came here to live it out. It is full of goodness and it is asking us to be our best selves. We try to live up to it.

So what is left between us? It is phenomenal respect, friendship, and compassion for our beingness, for what we’ve been and what we are, and for what we may become. What is left is the essence of love. Finally, we have reached a simple purity of goodness – the goodness of being able to sit in deep comfort, to hold hands in the quiet darkness, to speak softly of spirit in its many guises, and then, to go gently into that good night.