Anger and Bliss

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

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01/21/2018

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thin Ice

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

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December 21, 2017

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Life Purpose

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November 21, 2017

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

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

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

“Maybe,” I say, “but I don’t know.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Death’s Lessons

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

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September 21, 2017

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Metaphors

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August 23, 2017

I’ve been thinking about metaphors — the metaphors of Michael’s illness, the metaphors of caregiving, the metaphors of the larger world. In my way of looking at the world it is a metaphor-creating machine, always showing us the way, always showing us when we’re in alignment and when we are not, always showing us exactly what is going on if we can be still enough to comprehend it.

To understand our life, all that is required of any of us is to pay attention to what is happening in our personal and our interpersonal worlds, and to really look at how reality is arranging itself for us. Then we begin to unpack the deep messages and responsibilities it holds. Once we do this, we can see exactly where we are, and we can choose how to proceed.

A few weeks ago when my son and I cleaned our basement, a huge metaphor presented itself. Finding black mold in the trunk that was holding Michael’s mementos, and finding it only there, was a clear message. But then after the clear message comes the complex and layered unpacking of the metaphor that presents itself. God is speaking to us. The problem is that we don’t always know how to understand what is being said.

For instance, it is interesting that it is my son and I who are the ones to find the mold and who get rid of the mold. Michael’s illness prevents him from doing this kind of work right now, so we are the stand-ins. And what are we standing in? We are standing in something that it is dark and dangerous, something that was hidden in the unconscious chaos of our basement. And clearly, it is about cleaning up Michael’s representations of old memories in some way. But then the questions arise: Is Michael not involved because he had already let go of these mementos and so they were returning into the mold of the dark earth? Or is he supposed to see that the mementos are no longer necessary in some way? Or is it important for my son and I to encounter this dark mess and clean it up for him or for ourselves, to let go of something that we didn’t even know we were holding onto?

I’m still pondering the meaning of this and all I really know is that something that was hidden in the Great Below got cleaned up. Beyond that, I’m still trying to figure it out.

This past weekend Michael and I were blessed with witnessing what is perhaps the most potent metaphor of the natural world – the total eclipse. It is a sight that neither of us will ever forget as we bathed in the timeless energy of totality. The sudden stillness, the growing darkening of the sky, the weird shadows, and finally in totality, the stunning black hole surrounded by the most brilliant diamond light floating in the depths of Mystery.

It is such a beautiful metaphor – the dance of the Sun and the Moon coming together in radiant beauty and utter peace. And for a moment, the Masculine energy of the sun is “eclipsed” by the Feminine of the moon — an integration that is desperately needed in this tumult of personal and collective earthly events. It brought tears to our eyes for we knew we were seeing God in one of Its many magnificent guises.

The next day we bumped smack into another metaphor when we had our monthly meeting with the nurse practitioner at the hospital. We got the new numbers that indicate Michael’s progress, or in this case lack of progress, with his disease. Last month the misshaped protein was at its lowest level since we began this whole process a year ago, and we had dared to hope. Yesterday, the bad protein had almost doubled in number. So what’s the metaphor here?

First, protein is called the “building block of the body.” It is vital in the maintenance of body tissues and energy. Michael’s body is producing too many “misfolded” proteins and both his tissues and his energy are suffering. The building blocks aren’t working the way they are supposed to and this is happening in the marrow of his bones. In other words, at the physical level, the metaphor is that there’s a deep part of him that is trying to die. In fact, it is the deepest part of his physical being. It is the very marrow of his bones that is producing this illness and this metaphor simply cannot be avoided.

Second, and this seems to be a continuous learning, it means we can’t count on anything within the course of this illness. Of course receiving this news was a blow in many ways. I had dared to think that things were getting steadily better and obviously, this isn’t the case. There’s not a straight line in any direction.

Finally, there is an absolute necessity to let go of expectations. The truth is that it doesn’t matter what we think or what we want. And in some situations, it doesn’t even matter what our conscious intentions are. All that comforting New Age philosophy about our intentions creating reality is true to a certain extent. But when it collides with fate or karma or whatever you want to call that deeper underlying force, all the intentions in the world may not change things. There are forces at work that we simply cannot understand or control, and they have things to teach us that we’ve either forgotten or that we desperately need to learn.

All I know for sure is that it is this spiritual understanding, these metaphors, that  allow me to keep my head above water. For surely, without them, I would drown. They allow me to see that things happen for a reason, that there really are no accidents. For if we debase life’s “accidents” by not believing in their meaning, we undermine the deeper meanings that strive to inform us. Life is far too complex for us to imagine that we can control it, or halt any of its huge underlying movements.

I cry this week because I have to. I feel how pure and beautiful life is, and sometimes, how desperately sad. I feel the rawness and the grief and the utter simplicity of it all. I see the metaphors and realize that they are all telling me something about myself and about the human condition. Over and over, I surrender to this Mystery, this wisdom, knowing it is teaching me exactly what I need to learn. And always, it is teaching me about love.

I talk with my son about Michael’s results. He says, “Well, some metaphors will kill you.” He’s right of course. We’re all going to die and hopefully, we’re all going to receive the immense opportunity to face death and to receive the meaning of our metaphors. And finally, in the end, we can know that life, every bit of it, is a blessing.

Dance of Life and Death

Shiva

April 3, 2017

Today a woman almost died in the clinic. She was in the lab getting her blood drawn prior to receiving her chemotherapy. Apparently her blood pressure bottomed out and suddenly we hear a loud voice shouting, “We need a crash cart. Now!” All kinds of medical personnel arrive quickly and the air takes on a hurried urgency that is not usual for these generally boring days. A nurse comes out and tells us there’s been an emergency and no one will be taken into the lab for awhile.

Michael and I immediately go into meditation, sending light and love to this unknown person and her helpers. Both of us feel the patient’s soul struggling to decide whether to stay here or leave. I am aware of angels and Michael feels she’s decided to stay on earth but isn’t really happy about it – there is still some work for her to do.

In the meantime, another nurse comes out and begins talking with the only African American woman sitting alone in the waiting room, waiting like the rest of us. I realize that it is her mother or sister or friend who is in trouble. The nurse says they will be taking the patient to the ER, and then goes back into the lab to help.

I watch the room and for the most part people simply keep doing whatever it was they were doing, sort of a “business as usual” stance, though this is hardly usual. No one looks at the woman sitting with us whose life has just been upended. I’m not sure if it’s because she is Black or more likely, because they simply don’t know what to do. I cross the room to sit with her and ask if there’s anything I can do to help. She looks at me with tears in her eyes and says they will be going to the ER soon. I say, “We’re praying for you.” She takes my hand and we sit for a moment in the stillness of calamity.

Eventually, the patient is taken on a gurney to the ER. I see she has oxygen and IV’s but she is clearly unconscious, and the little drama moves on to another venue, as her friend or sister or daughter follows her down the hall.

But I am more shaken by this than I realize. As we walk up the stairs to the chemo suite I am suddenly weak and sickened, and a migraine begins its dreadful journey up the back of my neck and into my head.

This could be me, I realize, this could be Michael on that gurney. This clinic isn’t just some place we visit every week. It’s a life-threatening, life-saving place – a place of Western medical healing, and as primitive as it is, it’s what we’ve got. It’s the slim thread of hope.

We’d been beginning to talk about treatment as The Long Slog. We’ve been at this for 5 months now and we have at least 7 months left to go. This feels like a very long time some days and of course there’s no guarantee that everything will be better after all of this treatment is finished. We keep saying we’re “buying time” as if time is something that can be bought, when really we know that it’s all up to some Mystery that is far beyond our ability to control or comprehend.

Regardless, it’s all become bizarrely routine – the weekly trips to chemotherapy, the “up” time on Tuesdays after Monday’s dose of steroids; the lack of sleep; the creeping bruising, redness and tearing around Michael’s eyes; the growing fatigue; the ongoing problems with swelling of his tongue and mouth, and the list goes on. And regardless of how bad this may all sound, we’re actually weathering it with a fair amount of acceptance and calm.

Last week someone asked me how I’m doing and I found myself saying, “I’m walking through hell but I’m doing it pretty well.” And then, of course, it all broke down today and the reality of our situation came flooding through me and I was able to feel the true sadness and strain of what we are enduring.

So today was not routine. The woman going to the ER reminds us that this is anything but routine. People get really sick from these treatments and people die from these treatments. And it’s a hard road for all of us – for those who get better and for those who don’t.

But what I am realizing more and more often is that this isn’t something special or unusual or even out of the ordinary. People get sick all the time and people die from their illnesses or from some awful accident or they just keel over suddenly and without warning. This truly is the Human Condition – a phrase that continues to garner levels of meaning for me as we move through this illness together — patient and caregiver.

But as common as it may be, it isn’t routine, nor should we let it become routine. It is the dance of life and death that all of us have come here to learn. Today I realize that someday I may be the woman following the gurney down the hall. And I pray that when that day comes, I have the strength to walk with Spirit, knowing that I am exactly where I am supposed to be.

Hope and Poison

flower sidewalk

Feb 25, 2017

I had tea with a friend yesterday and he told me that the word “poison” was a word he had trouble with in my writing. I said, yes, it’s a hard word, a harsh word, but that I had used it consciously. The more I think about it though, the more depth I’ve encountered with it, and the consciousness I thought I had with the use of this word has been questioned and deepened.

Michael is being poisoned, and it’s a word we both use. It dissolves any sense of denial that we might have about what is happening, about the reality of this treatment he is undergoing. But as my friend said, it is also the poison that heals. And that is also the truth.

I’m not ungrateful for this treatment. Without it, Michael would be dead within the next several months. I’m also not ungrateful to the people who give us these treatments. They work hard and they are saving lives, and by and large, they are truly dedicated and caring.

But it’s such a primitive way of healing, this poison we consume. I remember going to an event at which Bill Moyers was present because he wanted to use the work for his series on healing. The presentation was about cancers and the way we heal them. The refrain of the song throughout the piece was “Cut, poison, burn!” and the woman who sang this piece performed it with anger and intensity.

It really struck me at the time, and it strikes me still. It’s all we’ve got, this cutting, poisoning, and burning our way through diseased bodies. This is the way Western medicine works right now, and we pay a high price for this healing.

Michael and I have spent most of our adult lives studying and using healing methods that are gentle and in alignment with nature. We have used alternative medicine as ancillary treatment for all kinds of illnesses, including cancer. We know of people who’ve chosen to pursue nothing but alternative treatment for cancer, and we know of several of those who have died. We also know the stories of those who have healed through diet, herbs, energy medicine, and meditation alone.

So we come to Michael’s treatment with a huge load of ambivalence. There are no alternative treatments for Amyloidosis so there doesn’t seem to be any way around our current path. But it’s hard. We believe so deeply in healing from that other realm, from the realm of energy and intention, from the realm of Spirit, that to subject ourselves to this system is difficult and disturbing.

And it does feel like a subjugation, a surrendering of ourselves, to a system that doesn’t understand us or our underlying ambivalence. How can it? It’s built around a method of treatment that gives little credence to diet or herbs or energy fields or any of the methods that we’ve seen work. It’s impersonal and lacks the individualized attention that is one of the hallmarks of alternative medicine. We are just a cog in a giant machine that at its base, cannot care for us in any other way. There are simply too many people to treat and too little time.

Now we’re starting to see the side effects of these “poisons that heal.” Michael is very tired, much more tired than he’s been before, and he can’t seem to sleep well enough to feel better. Even on the few nights when he does sleep well, it’s not enough to allay his underlying fatigue. His eyes look sick. They are red and swollen and they itch and bruise easily. His skin tears with the slightest rubbing against a harsh surface. He still can’t eat much of anything that doesn’t have a sauce around it, something to make it easy to chew and swallow.

In spite of this, Michael and I spend a fair amount of time every day meditating on health and healing. It is what we can do, what anyone can do, to help themselves heal. It brings the light of Spirit into a process that could lack that light without our conscious intentions. And it allows us to hope.

My friend reminded me of a quote from Meher Baba who exhorted his followers to “have hope,” and I found my ambivalence again. Though hope can be the perfect support for any endeavor, it can also bring an influx of desire and wanting with it. And when that kind of hope gets frustrated it leads to anger, fear, and despair.

So I’ve been careful in my hoping, and I think that is exactly what Meher Baba would have supported. As my friend writes to me today, “It is not ‘blind hope’ (like ‘blind faith’) or ‘grasping/craving hope’ that he is advocating, but a hope informed by the reality of grace and mercy.”

I do hope, we both hope, but we hope knowing that we have no control over the outcome of our hoping, that things may turn out very differently from what we hope. And knowing this, with full acceptance, we surrender to reality just as it is, over and over again, trusting that the larger plan of Spirit will bring us to exactly the place we are supposed to be.