Hope

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

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April 3, 2018

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Transplant

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

transplant

March 26, 2018

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

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

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

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

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

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

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

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

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

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

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

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

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

A Testament To Michael

It is a faith he has practiced his entire adult life and now it is here to be used in the biggest way possible.

Michael

September 9, 2017

Today I speak of Michael and his journey through illness.

Michael is going through hell. But you wouldn’t know it unless all you do is look at him. Certainly his body has changed immensely, but that is part of serious illness. It is his Spirit that remains remarkably pure.

Michael is going through hell. But each new wrinkle in this almost impossible process is met with equanimity and calm. Certainly, there are physical reactions to his plight. These are inevitable. But they rise and they fall away. He notes them, he mentions them, and then he leaps to the spiritual understanding that allows him to meet these gross indignities with both genuine acceptance and real presence.

Michael is going through hell. But his courage is intact. This is a trick worth noting! To be told that your “numbers” aren’t looking as good as they should, to take that information in fully and without resistance, and to accept that this is the reality, is a huge act of spiritual faith. It is a faith he has practiced his entire adult life and now it is here to be used in the biggest way possible.

And even though Michael is going through hell, he remains mostly steadfast in his belief in his eventual recovery. Of course there are times of doubt, times of trial, times of despair. It would be some kind of bizarre denial if there were not. But in spite of this, he remains focused on a good outcome. He’s looking forward to one day being off of chemotherapy and able to use whatever alternative therapies are available to him. In other words, he has hope.

From time to time he apologizes to me for having brought this sickness into our lives. “I’m sorry,” he says, “I’m sorry I brought this to us.” I say, “I’m sorry too. It’s been hard.” And then we go through the spiritual song and dance we’ve developed around his illness — each of us expressing that we know we are both players in this drama, that we’ve both chosen to be here to learn the lessons, that most of the time we’re learning something so deep we can’t even begin to name it.

Michael’s path to this level of understanding has come through Wisdom. He has studied esoteric traditions his whole life. He knows more about the arcane spiritual mysteries of almost every culture than anyone else I’ve met. And when he studies, he studies deeply.

He knows The Tree of Life, the Tarot, Builders of the Adytum, Rosicrucianism, Shiatsu, Chinese Medicine, Catholicism, the Bible, Reiki, Chakras, Remote Viewing, Astral Travel, Buddhism, Numerology, Astrology, Hidden Archeology, and much more. He can integrate information from a vast array of sources and bring it together in a way that is utterly unusual and genuinely deepening. And he believes in magic.

Michael used to be a master healer combining psychology and alternative medicine in a manner both unique and effective. He was also a highly unusual therapist with more than a little iconoclasm and irony thrown into the mix. At one point in his career he wrote psychological evaluations using numerology along with an array of other tests. They were seen as being “the most accurate personality assessments” that others had ever read. He has been known to tell clients that they “need to cut that shit out,” and amazingly, they have listened! People have literally come to see him from hundreds of miles away, have come to be healed, and have gone away satisfied.

Now this part of him is no longer operating, no longer relevant. Suddenly, and with warnings that went unheeded until they couldn’t be ignored, his Higher Self has chosen a different path.

So how does Michael now spend his days? Sometimes he writes, wanting to transmit spiritual understanding to others. Sometimes he practices his penmanship by copying numerous pages of historical documents using one of his precious ink pens and treasured Japanese inks. Sometimes he catches up on our financial books, a task I’ve managed to joyfully avoid. Sometimes he plays various games on his iPad. Sometimes he’s on Facebook and news channels and is more knowledgeable about what’s happening in the world than most. Sometimes he plays computer scrabble and then routinely beats me and our friend at scrabble on the weekends. Sometimes he bakes gluten-free bread, whirls an oddly-concocted smoothie, and makes apple crisp from our many backyard apples. Sometimes he appreciates the brief moment when the whole kitchen is clean. Sometimes he sits outside in a comfortable chair just watching the world go by.

Once a week, when he’s still high on steroids the day after chemo, he does chores. He goes to the store and the recycling center, gets gas, goes for a longer walk, and graces me with the immense gift of time alone in my own home. This kind of time has been rare! It’s only in the last month that I’ve truly stopped going to his chemotherapy appointments though I still go when we meet with the nurse or the doctor. The rest of the time now, he goes alone, and he actually seems to enjoy this solitude.

Michael meditates often. I suspect he goes to places most of us have never been. His knowledge of The Tree has allowed him a way into the Highest High and the Dazzling Dark. He has pierced the veil and met angels and guides and other archetypal energies on many occasions. He has been immersed in various qualities of light and sound and has been shaken to his core. He has been purified and blessed and he knows it. And finally, he has attained a permanent realization of his essence.

Occasionally, he wonders about what his life is coming to and what his task is now that he’s ill. There’s no definitive answer, of course, but it’s a question that each of us must ask if we are to find the hidden meanings behind the opaque face of physical reality.

Michael is going through hell but he seems to ask these life questions with great courage and grace. Certainly he complains from time to time but mostly he is kind and gentle and quiet.

Michael is going through hell. And still, he loves me as best he can and I return the gift. I have such deep respect for how he is meeting this time, these circumstances, this place in his life.

Michael is going through hell but it is no longer hell that he walks through. It has transformed him and he has transformed it. It is the challenge of meeting life on its own terms with absolute knowledge that it all ends in death. For all of us. And there is no fear.

Now Michael and I are such great friends and we sit together, not in hell, but in a new kind of peace. It is a peace built on living without answers, of not having a clue, of not knowing much of anything, and still somehow accepting and trusting it all.

Metaphors

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.

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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.

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.