Michael Speaks

April 18, 2018

Dear All,

I thought it would be a good time to hear from the dying one, the other person wandering through this grief stricken landscape. My words won’t be so eloquent or as emotionally honed as Candida’s, for these are where her strengths lie. However, I will present as best as I can.

I remember the moment of panic that Candida described. It was the moment when my physical vehicle, my body Deva, recognized that it had an endpoint, and that was a certainty. At that moment, I was retching violently, and unable to breathe. Those sensations, coupled with the primordial realization of finality, propelled me physically to a place I had never been before. It did galvanize me, however, to action on the physical plane. I was sure to have my DNR order entered into my chart, and also I understood that it was time for what may be final visits from loved ones.

Returning to my center, I felt a great sense of love and compassion for the body. This old friend, who had taken me through almost 68 years of life, was reaching its end. I wept long and hard for it that day. What then followed was the visualization that Candida described so well.

I am left with a new clarity, peace, and abiding love. For my body, for my life, those I love, and for Life itself. I feel ready for whatever comes next, and for whatever duration that entails. I am grateful for all these gifts, and for all those who have supported and witnessed. I am truly blessed. There is infinitely more to say, feel, and process, but all that can be done in Silence.

 

————-

Per me, nihil possum facere.

(Of myself, I can do nothing)

Thin Ice

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.

A Testament To 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.

The Talk

January 17, 2017

This morning we had The Talk. We’ve had it once before right after Michael was diagnosed, but today we went further. It’s the talk that’s hard to have. It’s the talk about death and dying.

When we had the talk six months ago we were lying in bed with Michael’s head on my shoulder while my tears covered the top of his bald spot. “What do you want done with your body?” I ask. “It’s immaterial,” he said, and we both chuckle at the pun. But he means it. It really isn’t important to him at all. “Burial? Cremation? Ashes scattered?” Really not important. “Memorial service?” Only if it helps the living, helps me, only if I want one.

Every answer is for me to do what is best for me because it really isn’t important to him. He knows he’ll be gone and he’s not afraid. He worries about me though, about what I’ll do. And all I can say is that I really don’t know, don’t know, don’t know.

In our hubris and our naiveté, we’d believed that we knew how our deaths would go down for us. We had a life reading with a Tibetan lama many years back and we were told that Michael would live to be 93, and I would live to be 87. We were at peace with this scenario. It seemed right and we could live with it. In fact, we believed it.

The idea has always been that Michael would be fine without me. He is a hermit at heart. He loves to read and study and learn and he can do it for hours on end and never be bored or lonely. He’s great at entertaining himself and for the most part, I’ve been the only person he’s needed to have around. He loves others, of course –his family, his son and his son’s family, my sons and their wives, a few close friends – but he’s never needed others around the way I have. He’d miss me, of course, but he’d read and write and teach and he’d be fine.

For years we could see this old couple we were becoming, loving each other for 50 years or so, my easy death, and eventually he would follow me with his own easy death six years later. Ha! It’s a great picture, isn’t it? This conceit, this fantasy, this idea that we have any control whatsoever over our fates.

Then today Michael says he is realizing again that he may actually die of this illness he has. Of course we’ve known this, but to truly know it and live it, is completely different. Like grief, these realizations seem to come in waves, and for whatever reason, another wave is washing us toward greater clarity now.

For the past several weeks I’d been re-reading these words I’ve written and just recently I found that at the end of Michael’s hospitalization the doctor had said that the light chain proteins in his blood would go down to zero in 4-6 weeks. It brought me up short. It’s now been more than 10 weeks and the light chain proteins are still around 300. They’ve been decreasing, which is good, but they’re not gone, and it is a potent reminder that this disease may not respond the way we thought it would, the way it was “supposed” to.

At this moment, when Michael realizes once again that he might actually die from this disease, I realize that I’ve been holding my breath for such a long time. I haven’t been speaking the words that I’ve been needing to speak. So finally I tell Michael I’ve been thinking the same thing, thinking that he could die, and he makes a joke of it (“Well, but that’s you.”). And we both laugh but tears are now streaming down my face.

We decide that we’re ready to ask our doctor for the real deal, the come-to-Jesus talk, the is-it-time-to-put-my-life-in-order talk. And in the process we discover that we’re ready to talk it over with each other again too.

So we start with my death. Michael says that if I die first, “which seems highly unlikely,” said as another joke, he would move to be near his son and his family. He’d be an old codger walking around and studying spiritual correspondence courses and spending endless hours online doing research and wise-cracking on Facebook. Of course he would “miss me forever.”

He expects that if he dies first, I would move to California to be near my sons. I don’t know what I’d do but for the first time I say, “What’s really happening is that I am getting ready to be a widow.” I’d been thinking this for weeks and finally I say it out loud to him. It feels hard and true.

Maybe I’d move eventually, maybe I wouldn’t, but then I said another thing that I didn’t know I would say. I tell Michael I would look for another partner. And he expects this, he knows this, he even wants this for me! No hurt feelings, no resentment, no recriminations – just the truth.

He knows I’m good at being a partner. I’m good at loving another human being closely and intimately. As a would-be astrologer he’s studied my chart, “You have so many planets in the 7th house, the house of partnerships and relationships. It’s one of the things that keeps you growing,” and he wants me to keep growing.

I know all of this about myself, of course, but to speak of it with such rawness was life-giving. Michael wants me to be happy, whether he is here or not, and again there are tears in my eyes as I write this.

We hug long and hard and I say, “But I’d rather it was with you,” and we hug even longer and hold each other as we both cry. And now the air is clear around us. There is peace and gentle kindness. I look at Michael and realize how precious he is, how amazing his deep soul is, and how grateful I am that we have been together in this life.

So today we turn to face the future with our great soft hearts wide open, knowing that whatever comes, is what should come — trusting that Spirit always brings exactly what is needed at exactly the right time. We have faith that what life gives us will be accepted with grace and courage. We mean to bless it all with gratitude and tears. And dear god, I believe we will.

Staying Strong

December 29, 2016

“Stay strong!” These are the last words my son says to me as he and his wife board their plane back to LA after their holiday visit with us.

“Stay strong,” and of course he is right but immediately the questions arise. Others have also used this phrase with me. It’s so easy to say, such a short and concise edict for behavior in the face of…. what? My husband’s illness and debilitation? The obvious loss of the life we once knew? The sometimes overwhelming physical, emotional, and mental tasks that this involves?

What does it really mean to stay strong? My husband is sick, really sick, and in chemotherapy for the next 10 months or longer. I have watched the effects of the last four months of hospitalization, a stem cell transplant, and massive doses of poison, and I think, what does being “strong” look like now?

Does being strong mean that you don’t cry? If that’s what it means, I’m failing miserably. I’ve cried and cried, usually just a few tears but sometimes by myself, I wail. I mean that literally – I wail! I wail with grief and stress and sadness and frustration and pain. And there’s really no way that I could do this otherwise. So I don’t believe that staying strong means not crying. In fact, just the opposite. If I wasn’t crying, I’d be going insane. I’d be suppressing very real emotions that must be expressed, that must find the light of truth, that must be loved and accepted for what they are – the simple and complicated sorrow of a loved one’s mortal illness.

My son is not comfortable with my tears and I don’t blame him. I mean, who really wants to see their mother cry? And I wonder if all the people who exhort me to stay strong are also uncomfortable with tears. Or is this exhortation something else?

I’ve been struck over and over by the “happy face” that people put on in the chemotherapy unit. It’s upbeat in a bizarre and shallow way. Can this be what is meant by staying strong?

People chat about little things, unimportant things – what they got for their birthday, what happened on their drive to the hospital, what their daughter said to their mother, the TV show they watched last night. So much talk about the inconsequential and the mundane. It is this happy talk that is the most disconcerting to both of us because it feels like a denial of the harsh reality we are facing.

Clearly it would be worse if everyone came into this unit complaining and focusing on the negative forces that surround us here. But surely this happy talk isn’t what is meant by staying strong.

Every now and then someone talks about the effects of the drugs they are ingesting, about how hard it is to sleep or eat, about how weak they feel. But this is said with a laugh and a smile, and is immediately countered with more laughter and a happily resigned statement of acceptance. “Oh well, it will be fine.”

Sometimes the chemotherapy effects are talked about with obvious depression and hopelessness. This is harder and is met with silence or negation. “It will get better. You’ll see. Just hang in there.” In either instance, the underlying message doesn’t get acknowledged. It’s just too hard for most of us to hear! We don’t know what to say in the face of this pain and suffering and so we slip into deflection and denial. We tell the sick person how good they are looking and we focus on the latest medical discoveries or the next holiday or who is coming to visit soon. We certainly don’t talk about dying.

Meanwhile, Michael and I sit in our chemo cubicle in relative silence. We meditate or read books or listen to podcasts. Anything to distract us from the reality of the poison that is entering Michael’s body. But really, is what we are doing any better than what these other people are doing? It’s different, yes, but we’re all just trying to get through something that is simply awful.

As I think about it, staying strong must mean continuing to face into the truth of what is happening to me, to my husband, to us. We’ve lost so much already and of course we are looking at the possibility of losing more. Clearly, things will never be the same again and our old life is gone.

But that’s true for all of us. Every moment of every day things are changing and our old lives are gone. Not all of us are facing into the truth of mortal illness, but all of us have our own truths to face. Certainly that must be part of what it means to stay strong – to face into all of the hard truths as deeply and clearly as possible, the hard truths of all of our feelings, all of our thoughts — and to face them with courage and love.

Michael made a card for me for Christmas around the theme of Dante and Beatrice saying that I am his Beatrice, journeying with him to Paradise. It ends with a quote: “Do not be afraid; Our fate cannot be taken from us; It is a gift!” And perhaps this is the strongest place for any of us to stand — squarely facing our fate and realizing over and over that it is a blessing and truly, it is a gift.

Chemotherapy Begins

November 14, 2016

I’m experiencing a cascade of images and emotions after our first full day of outpatient chemotherapy.

To start, we are directed to the “Infusion Therapy Center” for treatment. What a euphemism! It sounds like some luxurious spa with aromatherapy wafting through the air and quiet music playing in the background. Instead it is filled with people, all kinds of people, from the truly aged, to several prisoners, to people who look far too young to be enduring such an assault. And though the hospital has done everything they can to make chemo as pleasant as possible, it’s still a matter of poisoning bodies in order to save them. The place is packed!

Second, every appointment takes much longer than we think it’s going to take. Our one hour appointment stretches into over 4 hours today pushing several other things that need to be done into the busy afternoon. We aren’t prepared for this and we end up eating awful hospital food to fill the voids of stomach and heart that well up in such a place.

Michael also receives a new poison today, a drug called Cytoxan, and at least it has “toxin” in its name. It’s the only honestly named drug he’s gotten so far. We aren’t expecting this since we’d been told that it would come next week and that it would be on its own. Now it’s combined with the other chemo drugs and we are at the mercy of a system that changes rapidly and without explanation.

We ask for clarification and receive our new schedule for weekly chemo for the next year. I’m still wondering if the changes are due to the fact that Michael’s bone marrow aspiration from last week continues to show 3% abnormal cell activity. Though we’d been hoping for 0%, the doctor didn’t seem concerned. He said that Amyloidosis responds more slowly than other types of problems. Regardless, the initial regimen we were told about has changed and it leaves me wondering why.

It’s also weird the way the chemo drugs are delivered. There’s a check and double-check and triple-check system in place which is probably all to the good. But then, the nurse gowns up and puts on gloves and a mask just to hang the highly packaged drug on the IV stand. Michael makes a comment about how “this could shake one’s confidence” and the nurse says that as long as it goes into his vein and nowhere else, it’s fine. In other words, as long as the toxin doesn’t squirt out onto anyone else and stays in my dear husband’s veins, it’s fine because it’s only poisoning him.

We overhear an old woman being pushed in a wheelchair by an old man as they come to say goodbye to the nursing staff. She says, “Well, I’m 80 years old and my tumor has gotten bigger. I’m just not going to fight it anymore. I’ve fought the good fight and now I’m stopping.” Clearly, she is meaning that she has decided to die. The nurses really don’t know what to say and opt for soothing things, wishing her well, and avoiding any talk of death or dying.

It leaves me to pondering what one says when faced with a person who has decided to die? I want to say something like, “good for you.” If I knew her I would ask her how she’s feeling about her decision, but I don’t know her, and it would be odd. Her husband stands stoically by, uncomfortable and silent, while Michael and I sit nearby in our little cubicle struck by the stark honesty, boldness, and grace of her decision.

I’m finding that this aggressive language of cancer with its war-like metaphors has never sat comfortably in my soul. So, after the woman leaves, I ask Michael if he feels he is “fighting” for his life. Michael says that it doesn’t feel like it’s a battle to him. He’s making an “effort” but it’s more of a “passage between one stage and whatever comes next.” In other words, neither of us has an adequate way of talking about this process. It’s not a war, it’s something far more mysterious and unnameable. There’s an acceptance of the reality and an intention to live a longer life, but there’s also an acceptance that it simply might not work.

So here we are. Whether we say it directly or not, Michael is facing the possibility of his death, and he says he is unafraid. And, really, I hope I’m facing into the possibility of my own death. In fact, it’s not even a possibility for any of us. It’s an absolute certainty, and so often we don’t really speak this way. We allow our egos to avoid and temporize and deny, as if Michael may be dying, but we are not. It is such a human thing to do.

People visit and tell Michael how good he’s looking, and I suppose he is looking good for someone who’s being poisoned. But really, I look at him and it breaks my heart. His body is going through hell and I can see the hell in his eyes, his skin, and his wasted muscles.

And then I look at his spirit and it is strong and vibrant and filled with light. Perhaps this is the stark contrast that any awake person experiences as the body begins to die – the contrast of body and spirit – one in decline while the other reaches toward infinity.