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.

broken heart

September 21, 2017

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Intimations of Immortality

It is both the hardest year, and the most spiritually transformative year, of my adult life.

immortality

September 4, 2017

It is my birthday today and I’m noticing again that birthdays contain a natural bend toward philosophizing, toward looking back, toward summing up. As I look back, all I can say for sure is that this has been a weird year – it is both the hardest year, and the most spiritually transformative year, of my adult life.

One year ago my birthday was spent in the hospital watching Michael receive  shots in his belly. These shots are meant to stimulate stem cell production so that when Michael’s stem cells are harvested and replaced, there will be a large number of them.

It’s gruesome. Michael can’t help making a face when the shots go in and I don’t blame him. It starts to become obvious over the course of several days that some of the nurses are really good at giving belly shots, and some are not. It’s painful to watch. At any rate, that’s how last year’s birthday was spent. It was the beginning of this journey of many hours in the hospital, many worries about the meaning of Michael’s illness, and not many answers.

This year is much different. One of my sons and his wife come from LA for a visit, filling the house with youthful energy and interests. Then, my brother and his wife kindly appear from Colorado. Finally, our friend Kathy is at our door with cupcakes that look like flowers, and it’s a party — the first party in our house in a long, long time and it feels great.

But now they all are gone and only their shadows remain to remind me of their good hearts and glad words. The house is suddenly quiet again, too quiet, and I feel the flatness of grief at their leaving. So today I am left with both a fullness and a sadness that feel pure. Neither is tainted with guilt or regret or unworthiness. It is the fullness that comes from knowing one is loved. It is the sadness for my husband, for the man who once was, for the life between us that once was. I am grateful for the simplicity of this feeling for often my feelings are confused and windblown like the leaves that are now beginning to fall.

The sadness is obvious. Our lives have changed immeasurably in ways both large and small. Michael looks worn and weary. He no longer stands straight, and when we hug, he is now shrunken to almost my own height. His arms are thin and bent. His skin is dry and paper-thin. He walks slowly, shuffling around the house like an old man, and when he goes for a walk, he takes a stick to steady himself.

This week also brought a further look into how things can be, how they turn on a dime, on the precarious rolling of the cosmic dice. Michael got a cold on our trip to see the total eclipse. It starts slowly when we return and then builds for a week until finally he is barely eating and so tired that even simple tasks like climbing the stairs are a strain, an effort almost beyond his current abilities.

I keep saying he looks bad and he keeps denying that things are worse.  A horrid huge bruise develops around his left eye. It is a dark angry red that morphs into dark purple and black, and it is very swollen. “I’m just tired,” he says, “I’ll be fine.” I look at him and feel is forehead. It is hot and I ask him if he has taken his temperature. He hasn’t and when I return a few minutes later he’s discovered that he has a fever. This forces an immediate and reluctant trip to the hospital for a fever is considered to be dangerous, even life-threatening.

On the way to the hospital I am angry with him for denying his symptoms, denying his feelings. It is an old dance between us and it’s still one that we indulge from time to time.

I remember the awful week in the hospital after his transplant. He was near death and waving me away from him, holding me away with hand gestures. “I’m fine,” he softly moaned, when he clearly wasn’t. Now in the car to the hospital unbidden tears fall down my face but I hide them from him. “This is who he is,” I tell myself. “He doesn’t want to be helpless or vulnerable. He wants to believe that his will is strong enough to overcome these problems.” But no one’s will is this strong.

At the hospital his fever has fallen to within “acceptably elevated limits” and he doesn’t have to be admitted. But there are ominous rattling sounds in his lower lungs and he is put on a strong antibiotic with weird side effects that interact with his chemotherapy. We are warned that in the next several months the antibiotic could cause his tendons to snap and break. Apparently this makes a loud noise, hurts a great deal, and requires surgery for repair. What a strange world of modern medicine in which we are plunged!

One of my friends tells me that her father is suddenly looking older and intuitively she knows that something is wrong. Another friend’s father has just been diagnosed with a type of leukemia, and another’s niece is in the last stage of cancer. My friends are now facing into exactly what I am facing – watching the inevitable waning of the physical form, the short or long journey into the dying and death of a loved one, anticipating the horrendous sense of loss that follows.

So what is this simple sorrow and this unexpected fullness that I’m feeling today? It feels like one of life’s deep truths — the truth of the decline and death that is coming for us all. Some of us may be luckier. We may have a sudden death, an accident, a heart attack, a short sweet illness with an easy end. But many of us will die exactly like this with a wearing away of vitality and energy until finally there isn’t much of anything left other than the animal body still clinging to its waning life.

But this is the way it is, isn’t it? This is what is happening all the time. People are born and people die. Life is both fragile and ferocious. It dies and insistently springs forth again and again. It can feel cruel and wrong. But it isn’t. It’s what we came here for. We’re here to watch those we love pass from this earth. We’re here to learn about living in a body that we know is going to die.

It would be easy to become either nihilistic or simplistically religious in the face of this. But I don’t believe that it’s all for nothing, and just as fiercely, I don’t believe in the Big Guy in the sky who will save me in the end.

Instead, I see life as a constantly evolving emergence from the depths of Mystery. We are lovingly created to experience it in all of its miraculous and myriad forms. We are here to learn that each form is sacred. And finally, we are here to rejoin the Mystery in the full awareness of our true formless Being.

This is Michael’s journey now – maybe sooner, maybe later – and it is the journey for all of us. He is feeling better today but I watch him nodding into sleep on the couch knowing that one day he won’t wake up. I wonder if I will be there to watch him die, and then I wonder who will be watching me in the end or whether I will die alone. I feel the terrible and intricate beauty of this life. I feel the ineffable sorrow and the loving fullness. And on this, the anniversary of my birth, all of it brings sweet tears to my eyes once again.

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.

eclipse

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.

A Week in Hell

There have been 3 weeks of hell in this process so far. This past week has been one of them.

hell doors

8/1/17

There have been 3 weeks of hell in this process so far. This past week has been one of them.

The first one was the week of frantic driving to the Mayo Clinic, three days of invasive tests to receive Michael’s devastating diagnosis, the reality and shock only beginning to settle in as we drive home through the most terrifying storm, the most Biblical storm, I’ve ever driven in. On the way, our Iowa City doctor calls to tell us that Michael has ventricular tachycardia and he must stop driving “Now!” because he could die at any minute. I slip into the driver’s seat with no ability to assimilate this latest information as we drive through the horror of this night. We have to stop three times on the way home because sheets of rain are so dense that they cover the windshield obscuring vision that only lightning illuminates. The terrifying weather resonates perfectly with my inner terror – the shock of lightning, the horror of thunder and blinding rain, the bleak dark landscape with nothing but empty blackness ahead. This was a week from hell.

The second week was when Michael was near death in the hospital after his transplant with a white blood count of almost zero, not eating or drinking, with diarrhea and diapers, and only able to grunt and moan in communication. He literally doesn’t remember this week which is burned into me like liquid iron. This was a week from hell.

And then there’s this past week…. It started on Friday with Michael’s 5th bone marrow aspiration. It’s a horrible procedure to watch but it’s the kind of horror that I simply cannot turn away from. Sometimes I wish I was the kind of person who turns away, but I’m not. When horror presents itself, I feel I’m there to witness it. The aspiration literally involves having a large needle screwed into the hip bone so that the marrow can be extracted. It’s one of the ways the doctors keep track of what is really going on with Michael’s body and it happens every 3 months.

Luckily Michael is on morphine during these procedures and says they don’t bother him at all. I, on the other hand, am not on morphine though I can definitely see the appeal. It’s one of those squeamish procedures in which one sees bone being breached by a large, long needle, the needle literally thunking into the midst of the bone. Then the marrow, a bit thicker and darker than blood, is extracted and examined. It always makes me a little bit sick, nauseous really, but I am duty-bound to be there, to observe it, to undergo it with him.

We come home and Michael sleeps it off while I steady my stomach with some food, a walk and yoga. As I’m walking I think, “Darby is coming tomorrow!” and it makes me happy.

My son Darby has said that as an early birthday present he will visit and help me clean the basement. Michael is not allowed to be around dust and molds and of course, the basement is full of them, so Darby’s offer of assistance is necessary for any kind of movement in the vehement cacophony of basement trash.

The Basement! Like many basements, it’s become the repository for all the things we don’t want to deal with, don’t want to see. And it’s really bothering me. I know there are things in the basement that need to be cleared, need to be encountered, need to be revealed.

It’s been piled with boxes of stuff since we moved into this house almost 3 years ago. There’s a large pile of old area rugs. There are boxes of taxes, foodstuffs, lamps, bookcases, kitchenware, paint, art supplies, camping equipment, and luggage. There are Christmas decorations, mementos of my children’s childhoods, and record albums and CDs we haven’t listened to in years. There are old chests, old artwork, and really old photographs and written records tied up in boxes. The list goes on and on.

Darby and I work like dogs, or at least that’s how I feel — hard, physical labor. Up and down the basement stairs a hundred times carrying every heavy and awkward thing imaginable. Loaded car trips to Crowded Closet, the Crisis Center, and the recycling center begin to make a dent in the chaos.

Finally we come to the 40-year old painted wooden toy chest. I open the lid and find the box Michael has been looking for! It’s all his childhood stuff, family stuff, his baby pictures, his report cards, his school photos, him in his college Corps uniform, pictures of his son from babyhood and childhood. It’s his memory box. As soon as I move the box a cloud of black dust rises into my face. I look down inside the edge of the chest and there is black watery mold all along it. There’s a moment of horror as Darby and I both realize — this is black mold!

We look at each other and immediately know that all of the chest’s contents are contaminated and have to be destroyed. All of Michael’s mementos are full of death. I tell Michael and he goes and sits in his study. I think that this is hard for him but we don’t talk about it yet.

Darby and I put on masks and gloves and get the handcart that will allow us to move this ailing behemoth of a chest. The whole bottom of it is covered with the mold. It’s almost falling apart and it feels like it weighs a ton. We carefully walk it onto the cart. Darby pulls it up the stairs one awful heaving step at a time while Michael, who is now also gloved and masked, and I push the thing up from below to keep it from toppling. We finally get it to the curb with a huge sigh of relief and the sense of having dodged some sort of odd worldly bullet.

Michael goes into the house and Darby and I get into the car to head for Crowded Closet. “Well that was certainly an obvious metaphor,” he says. “Yes,” I agree. “Could it have been any more obvious?” We’re both laughing somewhat hysterically. “I mean, what did God want to say here?” Darby booms. “I mean, I’m not sure what the message was, God, so maybe you want to make it clearer!”

“Yeah, it’s not entirely clear, is it?” I laugh. “Hmm. Michael’s memory box is full of death! You think? Maybe Michael is supposed to let go of his memories….” Darby and I riff on this for awhile but we’re both pretty impressed. Metaphors this intense don’t come along every day.

We spend the next day and a half finishing the huge and filthy task of cleaning this basement, this unconscious mind that Michael and I have created, this part of ourselves that we haven’t been wanting to see. It feels Herculean, the cleaning of the Augean stables. Eventually, it is done. It’s been difficult but is entirely satisfying to my Virgo’s need for order and beauty.

Monday dawns well. I receive a lovely email from Darby’s wife and Michael gets the news that for the first time since we started this journey of illness a year ago, his bad numbers are finally coming down, moving toward the normal range. It’s phenomenal! Joyful! Hopeful! He goes to his chemotherapy appointment with more positive energy than either of us has felt in months.

Then a phone call from radiology arises. I’ve had an unusual mammogram. There are two spots that need to be looked at again. How soon can I come in? Tomorrow? Great. So as if any of us needed another reminder of Impermanence, there it is. A bad mammogram, a test that can mean so many things.

I have another mammogram and an ultrasound the next day. One of the spots is a cyst, the other one isn’t so easy to classify. The doctor says I can wait and watch it for a few months or I can have a breast biopsy. Of course I choose the biopsy. I can’t imagine walking around for several months wondering if I have breast cancer but this decision has many consequences – the largest being the emotional toll it will take on me and the people who love me.

I text Michael and my sons with the news on the way home. When I come in the door Darby says, “Want to hear something really weird? I just got a call saying that Dad got taken to the hospital in an ambulance! He’s having heart problems. There’s some kind of bizarre déjà vu going on here!” And it is bizarre.

Eighteen years ago on the very day that I was diagnosed with kidney cancer, my children’s father was told that he would need a quadruple heart bypass. Both of us ended up in the hospital at the same time, both of us with life-threatening conditions, both of us seriously ill.

It turns out that while my ex-husband was on the Great Bike Ride Across Iowa in the desperate heat of late July, he had become dehydrated. His heart went into atrial fibrillation, a fluttery and chaotic heart rhythm, and soon an ambulance is carrying him to a hospital in Mason City. We’re all a bit shaken and we wait uneasily for more news. Luckily, his heart recovers quickly and he ends his bike ride to come home.

Darby sees his Dad the next morning for breakfast and then I take Darby to the airport to go back to LA. I shed a few tears as he leaves but only a few. I’m not sure what is happening in my emotional field but I’m not reacting in ways I thought I would.

That afternoon we have our first appointment with Michael’s new doctor. He seems friendly and busy and he delivers news we haven’t heard before. Apparently the hope was that Michael’s numbers would be in the normal range long before this, and they’ve never even gotten close until now. The doctor sees the progress of his current chemotherapy regimen and he tells us that once Michael is at a normal level, he will have another year of chemo to endure.

Another year! I am floored. My heart sinks and there’s a heaviness in my chest that is almost unbearable. We’d been told at the outset that there would be a year of chemo after the transplant. We had accepted that and had been expecting we would be done with these poisons in the next 2-3 months. Now we’re looking at 14-15 more months. I feel like I can’t take this in. It’s simply too much.

When we arrive home we hear from Michael’s sister that his mother is in the ER after she became dizzy and nauseous and then fainted. Later she is admitted to the hospital for observation of her heart. We are more than a thousand miles away and all we can do is wait to hear what’s going on. Michael is completely worn out while I continue to be in an odd state of detachment.

I know I’m going through a lot – the bone marrow aspiration, the breast exams and the upcoming biopsy, the basement cleaning, the black mold, the additional year of chemotherapy, the heart problems of my ex-husband and my mother-in-law, my son coming and going. It’s all too much! And yet, still I don’t cry, I can’t cry, and I’m not sure why.

That evening Michael is so tired he’s in bed by 7pm while I watch some mindless thing on TV, just trying to find a break from all the chaos. I go upstairs and look in on him to find that he is barely awake. He reaches for me and I go to him, hugging and kissing him, and for a moment I bury my face in his neck.

It’s Michael’s smell! It’s the smell that I’ve known for 34 years. And now 34 years of memories come tumbling through me, moment after moment of this smell, this smell that I’d almost forgotten, that I hadn’t smelled in these last 12 months, this deep animal comfort, this home.

I leave the room, leave him to sleep, and find that at last, this smell has brought me to my knees. At last I am crying. It’s all been too much, all of it, all of these last 12 months, all of this suffering, all of this fear and worry, all of the heartache. I cry and cry.

I go to the breast biopsy alone. Others have offered to be with me but I’ve decided to face it alone and I’m not sure why. My blood pressure turns out to be the highest it’s been in years which isn’t that surprising, though I am surprised. I’d been feeling calm, feeling I could face whatever might come. And now I see that my body is really nervous. I send it messages of love and understanding. I tell my breasts they are fine.

The procedure isn’t as bad as it could be. There’s a lot of numbing beforehand, and the doctor says that the “vacuum” biopsy will be over relatively quickly. It hurts deeply for a brief time and the nurse tells me I’m being “so strong.” I wonder if she says this to everyone, but it doesn’t matter. It makes me realize that in spite of the fact that I feel like I’m ready to fall apart, that just one more nudge would put me over the edge, I’m doing ok. I’m hanging on. I go into a meditative state, and the biopsy is over. Seven days of hell ends with this.

Today we hear that the biopsy is benign! We also hear that Michael’s mother won’t be able to visit this week because of the medical problems she is having. When I hear this news I realize that this is the Way of the World. Perhaps it’s been a condensed version of it in this week of hell, but this is how it works. There are ups and there are downs, there are gains and losses, and sometimes the ups last for days or weeks or even years, and sometimes the downs do too.

And no matter what, it’s all about learning to find that sacred space in-between. It is the space that recognizes it’s all grist for the mill, that every moment, every event, is here to teach us to grow our souls ever more consciously, ever more kindly, with ever more love. It’s all here to wake us up. Bless it all. It’s all a gift, a kismet, a mystery, all unfolding exactly as it’s supposed to.

The Labyrinth

labyrinth

6/29/17

I go to a retreat center for much needed relief. I’m in a hermitage, the small solar-powered straw bale houses set off on a quiet place on the property. I’m immediately struck by the fact that I have chosen to hermit myself away from the hermitage of illness that’s been created by Michael in our home. I am completely burned out.

After I unpack I go to the labyrinth which is close by and for the first time ever, I am blessedly, unrestrainedly, alone. What a gift! As soon as I enter, I begin to weep. Just soft tears, realizing how sad I truly am, as I walk so slowly through this journey of the soul. I ask over and over to know my spiritual path. “Show me my path, show me my path.”

As the twists and turns unfold I am taken into the Eastern quadrant and there I begin to sob, to cry my heart out, alone in these woods, alone on this path. I am desolate with sorrow and loneliness. There’s no other word for it. Desolate. I realize I’m not prepared for how lonely the caregiver in me has become. Once I move into the South I begin to calm and other thoughts enter my mind – thoughts of the mystery of Spirit, thoughts about being taught this deep hard-edged lesson, thoughts about my astrological north node which has always cautioned me that my learning must be about independence.

Then I am in the West. I notice the animal tracks that I’m sharing this path with – deer, rabbits, chipmunks, birds. I notice the small branches that cross the path and instead of removing them I recognize them for what they are – the things which cross the path, the things that mark a brief stop or a need to step over or go around. I move even more slowly now. As I enter the North it becomes a place of recovery, a place for rest in which I am more sure-footed. But as I enter the East again, I am besieged by grief – overwhelming, heart-stopping grief. And again, it begins to abate in the South. I am curious but still crying.

I honor all the sacred directions and the powers they represent. The East – the realm of Air and Thought. The South – the realm of Fire and Spirit. The West – the realm of Water and Emotion, and the North – the realm of Earth and Groundedness. But I am drawn to stop in the West.

In the West, the King of Cups comes to me. I had drawn his card as the outcome for my summer solstice tarot card reading and had been wondering what the lesson is. He is “the fire of water” and his picture is one of a King sitting on a throne that is riding on top of the water. He is not taken under the water, into his emotions, in any way. He recognizes them, feels them, but does not dwell on them. And he holds the paradox of fire and water – Spirit and Emotion – a paradox that is held in balance as he sits on top of his feelings rather than being overwhelmed by them.

By the time I finally reach the Center, it all comes tumbling in. All the disparate parts of the self, all clamoring for attention, for simple recognition. I cry more deeply and then finally, I am calm. I sit for some time and leave the labyrinth without retracing my steps, knowing this is not the holy way, and not caring at the moment, just needing to be moving on, just needing to understand the lessons of the labyrinth.

I realize I have been dwelling in my sad emotions of late. It’s hard not to. There are times when I look at Michael sitting on the couch and I can barely stop myself from crying. His life has become so much smaller – days of reading, writing, meditating, computer surfing, and various distractions of food and TV. He even looks smaller. He’s curved inwardly and his spine is rounded and knobby. His arms are thin and he’s losing strength and grace.

Somehow the lessons of Water and Fire come pouring through me now – “Feel it all,” they say, “feel everything, and then turn it over to Spirit! Let yourself burn in the purifying fire. Let yourself be taken up to heaven and released.”

Outside the labyrinth there is a path called the Cosmic Walk and I decide to take it. There are markers all along the way starting with the appearance of modern humans, then prehistoric peoples, then mammals, then lizards, then sea life, then plant life, then bacteria. All of this occurs within a relatively brief span of the walk and there’s a great walking distance between this and the creation of the earth and the solar system – billions of years. Finally, many billion years later, and many more steps along the path, is the creation of the Milky Way and then all the way out to the Big Bang, or as the walk says, “The Great Flaring Forth.” I love this – the Great Flaring Forth. It reminds me of the Dazzling Dark on the Tree of Life. We are so small in our little lives, our little deaths. I emerge from the walk feeling cleansed and renewed.

I go into the retreat center’s meditation room. Again I am blessed with solitude in this soft silent space. When I emerge I see a prayer book for those who come here, a book to petition God for intercession into our heartsick lives. As I look through it, page after page contains the words, “Prayers for my dear husband….” I catch my breath realizing that countless others have come to this exact place before me with these exact words: prayers for my dear husband. It breaks my heart wide open and I cannot write these words for Michael. Not yet.

I walk the labyrinth alone again the next morning. So slowly. I wonder if I will once again encounter the deep grief of my thoughts in the East. But, remarkably, I don’t. There is a sinking, a swamp to be avoided, but I can walk through it without tears today. Then, unexpectedly, I break down in the West, the place of emotion and realize that maybe this is exactly the right place to break down. Today when I reach the Center, it is very peaceful — steady and calm and full. I walk out in the sacred way this time, unwinding my path from the Center to the beginning, to the end, and feeling the wholeness of this journey.

I go back to the meditation room now, then back to the prayer book. I write: “Prayers for my dear husband, Michael.”

Anniversary

wedding

June 26, 2017

It’s our 30th anniversary today, and it’s certainly the strangest anniversary we’ve had. We spent the morning in the cancer clinic and chemotherapy suite which is always strained and difficult. I find I am raw today and I cried for the first time in front of our nurse practitioner who has become our primary care provider. Maybe it’s because it’s our anniversary, or maybe I just needed a reason to cry since I haven’t been crying lately. But today held more questions about the future and the long term outcome for Michael.

Today also made it clear that the “year of chemotherapy” we began this journey with, wasn’t really just a year. At that time I naively believed that I could get through a year. It’s only 12 months. It will be difficult but doable. Now we’ve been offered yet another drug after this one, and the promise of more chemotherapy advances in the future if that one doesn’t work. In other words, Michael could be on chemo until the day he dies which is exactly what happens to a great many patients.

I asked about the future if we stop the chemo and of course, she doesn’t have any answers. We can’t know what would happen if Michael quits the chemo, and we can’t know what happens if he stays on it. But she is really glad that we are talking about the quality of life and she wishes everyone would talk about it rather than just going from drug to drug to drug.

It’s Michael’s decision of course, but the quality of life right now is terrible. He’s tired, and there’s a lot of sitting around the house, timing the various daily therapies, and eating mushy, gravy-laden foods that are the only things that work with his dry mouth and swollen tongue. His skin looks sick and sallow and his eyes have constant bruising and tearing. Even a little scrape against clothing can cause bleeding and cuts that don’t heal for weeks. Our days are full of numbing sameness and our nights are full of searching the TV for something uplifting or interesting.

So today is a harder day, and as one of my friends says, it’s not going to get any easier. The longer we walk this road, the harder it becomes. It’s just the truth of long term mortal illness and the endless machinations of drugs and treatment regimens.

And because it is our anniversary, I’ve been thinking about our marriage vows more deeply. In fact, I went to the bookcase in which I was sure I had stored our vows only to find that the book I’d written them in wasn’t there. It’s not anywhere that I thought it would be and I’m puzzled by the metaphor that appears before me now – the “loss” of our vows. Clearly, it is a good time to deepen into those vows of 30 years ago but I have to do it from memory rather than from the actual words.

I’m sure there was something in the vows about “in sickness and in health” — some kind of acknowledgement that we are in this together, come what may. But we were so young then – mid-30’s – and we didn’t have a clue about what we were promising. Both of us were healthy active adults with children to care for, careers to grow, and a house that promised to hold us all together. We’ve been lucky. Our marriage has been a joy and a fellowship of mutual support, kindness, and deep soul connection.

Now with Michael’s illness, the “in sickness” part of our vows has become much more real. Though I had kidney cancer 18 years ago my recovery was relatively quick and uncomplicated. It left me with years of unexplained fatigue but we still went to work, went on vacations, had parties, visited grown children, had friends over for dinner, and lived a more or less ordinary life. Now our life is far from ordinary and both of us mourn its demise.

So I support him in his sickness knowing that it may never be healed, knowing that whether I like it or not, I choose to live out this vow made 30 years ago. It’s a tougher vow than I realized at the time of course, but it’s a vow that speaks to one’s integrity and one’s soul and I know that I am growing in both of these.

We spoke with a psychic recently, a woman we trust, a woman who has given us good advice over the years. And I’ve been watching Michael since that time, watching to see what he is going to do with the information she gave us.

She said Michael’s illness is all about the long term karma of self-sacrifice. She said he’s been a healer in many lifetimes, and each of those lives has involved giving too much and not receiving enough in return. She says the cure for Michael is to meditate on the light and dissolve into it. He’s good at this and he takes this task seriously. The cure is also for him “to learn the energy of receiving.”

He’s been puzzling over this and I’ve been asking him what he thinks it means. So far, no real answer has emerged for him and I’m not really sure that one will. The psychic also said that since Michael has attained his enlightenment, he will not have to return to an earthly existence. Now he sees our whole scenario as a “win-win” situation — either he’s healed and he lives a normal life span, or he dies and he dissolves into the Oneness that is his true home.

In our conversation about the psychic reading he asked me what I needed and I found myself saying, “I need you to get better!” It was so childish, really, a child’s cry against the unwavering reality of physical decline. I knew it was childish but it was also true, and I dissolved into tears.

I can see that these patterns probably aren’t going to change. For what is the energy of receiving? It must involve the opening of the heart and truly knowing that you can’t do it alone. And this is a man who has always done it alone as long as I was at his side. He has never admitted defeat, has never needed anyone but me to help him, has never been overwhelmed by this life, this illness.

But I can also see where this is leading. At some point, he will be gone, and I can see that at the level of his enlightened consciousness, it’s all the same to him.