The Cost of Love

Now it’s just me. I think in some totally irrational and magical way, I didn’t really believe in Michael’s death. I could surely see it coming, but I didn’t fully appreciate the enormity of him actually not being here any longer.

us at Duncan's thing

May 20, 2018

I’m being amazed by how casually Michael and I spoke of his death. It wasn’t really casual, but we had to establish some way of speaking that would allow the future to unfold. So conversations would begin with, “When I die, you might want to sell everything, and take to the road!” Or I’d say, “When you die, I’ll probably move to a smaller house.” Or “What would you like to have done with your ashes? Do you care where your ashes get put?”

And though we spoke sanely, matter-of-factly, it was anything but easy. But it had to be done. Things had to be arranged.

Sometimes his sentences would begin with, “If I die…,” and I’d say, “I don’t think there’s an ‘if’ about it.” Michael would pause, then smile just a bit, and gently say, “You’re probably right.”

It was all so easy, or seemingly easy, but really, it was agony and we both knew it. Toward the end it became more serious. “Please make sure that Adrian gets the right pen, and give this one to Darby, and this one to Colin.” “I’ll make sure,” I’d say.

Later he’d say, “You really need to learn how to do the books!” I’d say, “I will, I will.” But I never did. I hated doing the books. It involves the computer and a program that I don’t have a clue about, and endless rules about what account goes where, and what bill comes out of this or that account. He wrote it all down for me. In fact, he spent hours creating a cheat sheet with diagrams and pictures and “everything you’ll ever need to know.” And then today, I get the ATT bill and it’s not on the sheet and there’s no trace of what account it comes out of. The best laid plans….

Navigating this grief is a slow learning. There are so many things that make me cry. I found his baseball cap with the Tree of Life on it and it still smelled like him, just a little, and suddenly I am sobbing. Or a song comes on the radio while I’m getting my nails done for his memorial service, and I almost have to leave the shop I’m so overcome.

There are obvious pitfalls such as looking at his photo, or handling one of his precious pens, reading one of his notebooks and finding a letter to me that he never sent. It’s full of love and wishes for me to have a peaceful life. I cry and cry.

My heart literally hurts sometimes. It’s as if it can’t contain this huge sorrow and it bursts out and I find myself rolled into a ball on the bed. “I miss you so much, Michael, I miss you so much.” I say it over and over and it doesn’t make a damned bit of difference. There’s a horrible bodily insistence that wants to touch him again, talk with him, be with him in any form whatsoever. But he’s gone, he’s gone, he’s gone. There’s no way around these times from what I can tell. They have to be lived through.

I think that I thought I would be able to protect myself from the enormity of this sorrow by all the grieving I did in these past 2 years. Ha! The joke’s on me. There is no protection, no way that two energies so intertwined can separate without horrible pain. I am ripped apart.

In some respects, this could mimic the pain of divorce which I remember all too well. But this is much more final. Much more empty. There’s simply a rather large hole that is no longer being filled, and now it’s up to me to learn to live around this hole, within this hole, within this new (w)holeness of me.

It’s weird because really, I’ve been taking care of myself for about 2 years now. Michael was more and more incapacitated and I had to take over more of the responsibilities. But it’s weird because in some way I still felt that it was a “we” doing things. And it was. We grieved together. We talked about dying and death. We had our inside jokes about the drugs and the side effects and the routines Michael’s illness engendered. We understood what We were going through.

Now it’s just me. I think in some totally irrational and magical way, I didn’t really believe in Michael’s death. I could surely see it coming, but I didn’t fully appreciate the enormity of him actually not being here any longer. In some odd way I thought we would still be doing it all together, that somehow, we would do his death together. I know this is nuts but it doesn’t matter. We were wrapped in each other’s lives in thousands of little ways and the shock of him actually being gone is almost incomprehensible.

A week after Michael’s death, I take my first trip out of the house. I am fragile — it’s the only word that fits. I am raw, an open festering wound. I am wrapped in a sorrow I’ve never known before. I see a woman I barely know in the grocery store and she grabs my arms, looks searchingly into my eyes, and says, “Are you peaceful yet?” I was thoroughly taken aback! Really? I stumbled and said something like, “I’m nowhere near peaceful right now.”

Then yesterday a neighbor stops me on the street and asks, “Are you just sad all the time?” And my answer is no. I’m not sad all the time. And I’m not completely peaceful either. I’m absolutely deeply in the middle of a huge grief. And when I’m sad, I’m really sad. And when I’m not, I’m more or less fully engaged with whatever is happening in the moment. There are even times of real peace. This has made me realize quite starkly the profound difference between depression and grief, for depression is filled with hopelessness, and I’m not hopeless.

Yesterday was also the first day that I fully realized that I’m on my own. I know this is obvious, but it didn’t really hit me until then. Yesterday I was struck by being a “widow.” Such a mournful word. I think it’s the “w’s” that define its mournfulness in some way – their sound at the beginning and the awful silent end. I’m a widow and I’m on my own and I have to take care of myself.

And yet, I don’t feel like a widow. I feel like a person who is carrying a huge sorrow, and I know that this sorrow has opened and strengthened me in ways I can’t even begin to fathom yet.

Part of me wishes to skip ahead a year, to a time when this pain is more distant, more abstract. An ache in my psyche but no longer a red bleeding wound. But of course, this is impossible. This pain must be lived through. This pain is the price of love. I am being taught the price of love. And I would pay it again, even knowing all of this, I would pay it again.

 

 

In Memoriam

As far as I know, there have been three miracles around Michael’s death.

Michael

May 13, 2018

How does one remember a love so long and true? How can I speak of my love without falling apart, without being down on my knees, without knowing that any words I could ever speak would be inadequate and pale beside the reality?

As far as I know, there have been three miracles around Michael’s death. The first miracle is that I haven’t had a single migraine headache since the day he died, and I’ve had severe migraines for 25 years. In what is certainly the most difficult time of my life, I haven’t had headaches! I believe that Michael took the underlying pattern of my headaches with him when he left. It was his parting gift to me.

Michael was a deeply spiritual man. In fact, our first real conversation outside of work-related things was about our shared excitement over the Seth books and the underlying reality they revealed. We agreed that we both knew that Seth was revealing the Truth. We knew we were being taught the meaning of life and of death. And we knew that few others shared our passion for this spiritual work. I had already loved his earthy quick dry wit, but now something else emerged. I realized I had found a like-minded soul.

From that moment on, each of us looked for reasons to spend time together – to laugh, to speculate, to talk, to agree on how to value the immense beauty of the Mystery that contains us. From that moment on, it was love.

When Michael died, we’d been together for almost 35 years, and we’d known that we were soul mates. When we met, both of us were coming out of relationships that had scarred us, and we were wary. Well, actually, I was wary. Michael already knew we were supposed to be together. In fact, he said that he’d known it on the day we met more than a year before this. All I had known was that this man was interesting, smart, and really funny. And I wanted more.

Through fits and starts we found our way to each other and were married. It was weird for me. I’d always ridden on passion, and though there was a kind of passion, this was a quiet and calm steadiness that continually surprised me. This was a passion that I didn’t understand. This was Michael.

We raised three good boys into three good men together. We hear so many stories of children so damaged by divorce that their lives are shattered. And though there was surely damage, all three of these boys grew into good men, and to a large extent, I believe that this is because of Michael, because of the kind of man he was, the kind of model he was.

Michael was so amazing that without a word from me, he knew how to be with my children. He knew how to play with them, how to make fun out of He Man figures and legos, how to soothe a frightened child, how to calm an angry one. He was a miracle right from the start.

And saying that, it took me awhile to realize what a real miracle he was – for we could talk about anything that arose between us. Granted, it was always me bringing things up, but when I did, he’d go there with me – through all the highs and lows, he never wavered. His patience with my moods, my quicksilver gyrations, my endless questioning became the balm for my soul. I, in turn, became the language of his heart.

He was also brilliant. His knowledge of esoterica and his ability to integrate genuinely difficult information into workable and practical experience was more developed than anyone else’s I’ve ever met.

It was his brilliance and his inspiration that initiated Eastwind School into being. It was mine that engendered Eastwind Healing Center. Neither of us could have done it alone. It was the alchemy of our marriage, the balance of spirit and heart, the magic of true love, that allowed the first integrative medicine center in Iowa to be born. It was here that we learned the language of teaching in the highest sense that allowed so many to be touched by our work together.

Michael was the most spiritually devoted man I’ve ever known. He literally spent his entire adult life studying and practicing various systems of self development. He started with TM at age 19, then went to Seth, then to the Kabbalah, then to The Tree of Life, then to Western magical traditions. Along the way he also studied Tibetan Buddhism, Reiki, energy healing, Chinese medicine, and various other esoteric healing methods. He was literally the most learnèd man I’ve ever known in the integration of strange magic. His whole adult life was spent in the quest for enlightenment.

In December of 2015 we were initiated into the meditational practice of Light and Sound. Four months later, on April 12, 2016 he realized his essential nature, became enlightened, and was forever changed. I do not say this lightly. This was the real thing and it was evident in the deepening calm and presence around him, a presence that pervaded even the most extreme physical difficulties.

At that time, though we didn’t have the diagnosis, he was already suffering from the disease that killed him. Once he was diagnosed and quit working as a psychologist and a healer, he struggled to find some purpose that would fulfill him. He never really found one. In many ways I think that his enlightenment was his purpose, and it is what allowed him to die. He’d done what he set out to do, and really, there wasn’t anything more that he needed from this life.

We called a psychic who we’d relied on through the years for wisdom and guidance. She told him that he would die within two years unless he learned to receive. She kept saying that: “You must learn to receive, you must learn to receive.” She said he had been a healer in many lifetimes, and that in all of those lifetimes he had given more than he’d received, and in that process, he’d created an imbalance that required adjustment. She said that the final learning of this lifetime was to open his heart to receive love from others, not just from me, but from all the many who were willing to give it in ways both small and large.

IMG_4158While he was in the hospital this last month, I did a tarot card reading on the course of his illness. There were 7 major arcana in this reading which is a very strong indicator that one is now in the hands of Fate with little to no ability to control the outcome. In this reading, the outcome card was The Star. When I looked at the reading, I knew he was dying soon. I also knew that when the Tower’s lightning bolt struck, Michael was held in the lap of the Great Mother (the Empress). It was clear that he would move into a state of trust and peace (the Fool) that would lead to his final transcendence (the Star).

Five days before he died, Michael said that he realized that all the things that involved dying were easily falling into place, while the things that involved living, were not. I don’t think he believed he would be dead within five days, but he did see that death was coming. He had heard his body’s spirit telling him it couldn’t go on much longer, and he accepted it’s message.

He began to cry more easily than he ever had, and this was a man who almost never cried. He cried when people brought food to our door, he cried when friends dropped in for a short visit, he cried over the kindness of the Hospice team, he cried when his son helped him brush his teeth, he cried after meditating because he was so full of love that he was ecstatic and grateful.

I believe that in the end he did learn to receive. He was bedridden and absolutely reliant on others for his care, and his dear spirit became even gentler, even more loving. He started calling me “my love.” “My love, would you be able to get me another drink?” “Thank you, my love.” He’d never done that before and I knew that in his absolute reliance on others for help, he was experiencing a depth of receiving he hadn’t previously realized.

On April 25th, he woke me up at 3:30 am. This was the second miracle. I had put on sound-deafening headphones because of a barking dog in our neighborhood. I’d also taken a sleeping pill out of sheer exhaustion and a profound need for sleep. Though there was no physical way that he could have aroused me, I “heard” him calling me and I awakened.

I rushed into the living room to find him gasping for breath and demonstrating what I now know is a “death rattle” – his body so full of fluid that he could barely breathe or speak. He was physically in great distress. I hooked him up to oxygen but it didn’t help. Then I started to do energy work around his crown and 3rdeye and heart, particularly his crown, opening it so that his spirit could fly out easily. At this point tears were flowing down my face and falling on his bald head. I kept saying, “I love you so much, I love you so much.” With his last gasp he said, “…love…you.” His eyes rolled up to the top of his head, there was one last shudder, his eyes rolled down, and he was gone. Our last words were words of nothing but love.

When he died I felt a brief, deep shock, and then, suddenly, I was very, very calm. A peace came over me and I meditated and sat with his body by myself until Hospice came and then my brother and his wife awakened.

My brother’s wife came into the living room where Michael’s body was laid and said she had a headache. She said it was a weird headache in that she was seeing stars. I said it sounded like it could be the aura that precedes a migraine. I asked her if she wanted some medication but she said it didn’t really hurt.

IMG_4169

And here is the third miracle: On their way back to Colorado, my sister-in-law told my brother that she’d realized that the only time she saw stars was when she was looking at Michael’s body! Clearly, he was sending us all a message.

The peace of Michael’s death has remained in our home. I am in deep grief, but there is a level of stillness that wasn’t here before. I know he went to the Stars.  Finally, he has found his way back to his true home.

 

 

He is Gone

Michael

This is the picture of Michael that I took on the day of his enlightenment: April 12, 2016.

On April 25, 2018 at 3:41am Michael passed from this life to the next. I will be writing about it once I am able. He awakened me at around 3:20am and I found him struggling to breathe. I got oxygen started but it didn’t help and there was a horrible deep “death rattle” in his chest. I kept saying “I love you so much, I love you so much” while trying to ease his discomfort with energy work. His last words were “I love you.” Then his eyes rolled up into his head, rolled back down, and he died. I am in grief beyond words.

Here is the obituary that he wrote for himself in February.

Dr. Michael J. Santangelo, 68, died on April 25, 2018 at home in Iowa City from complications of amyloidosis. Michael was born on April 20, 1950, oldest child of Michael F. Santangelo and Anna Norma (Zorio) Santangelo.

He grew up in Philadelphia and in its suburb of Levittown, PA. After finishing twelve years of parochial school, he attended Virginia Tech, earning a bachelors degree in Mathematics, as well as a masters and doctorate degrees in psychology. While in graduate school, his son Adrian was born.

After graduation, Michael worked as a clinical psychologist in mental health centers in Muscatine and Cedar Rapids, IA. During this time, he served as director of clinical services and headed a partial hospitalization program for the chronically mentally ill. After leaving community mental health, he worked as an associate in three private practices, was a consultant with the Iowa Department of Human Services, and co-directed behavioral research in hemophilia and AIDS at The University of Iowa Hospitals and Clinics. At about this time, his long-term disenchantment with the traditional practice of psychology led him to pursue training in Asian massage, traditional Chinese medicine, naturopathy, and energy medicine.

In 1987, Michael married Candida Maurer, the love of his life, and became step-father to her two sons, Colin and Darby. Together, Michael and Candida founded what is now Eastwind Healing Center in 1994, and Eastwind School of Holistic Healing in 1997, a massage school they directed and taught in for ten years. The focus of their healing practice has been the integration of psychology and alternative healthcare, which made the Center the first of its kind in Iowa.

Michael’s interests were always esoteric and eclectic. From an early age, he was interested in spirituality and metaphysics. For many years and until his death, he was a member of Builders of the Adytum (BOTA) and the Ancient Mystical Order Rosae Crucis (AMORC), two prominent organizations that follow the teachings of the Western mystery tradition, especially Qabalah and Tarot. He also served on the editorial board of the Rose+Croix Journal, the academic publication of AMORC.

Michael studied and practiced meditation since his adolescence, and this background informed his more than forty years in the professional practice of healthcare. His approach to working with others was very eclectic, and he used his varied background to assist people with many different problems, from emotional and mental, to physical and spiritual. He also taught extensively at all levels, from community education to undergraduate and graduate courses in psychology. Later in his life, his teaching focused primarily on spiritual matters. His lectures were always amply spiced with his irreverent sense of humor. He also wrote, publishing books on personal growth and astrology, yahtzee, and writing a spiritual blog.

Outside of his professional interests, Michael enjoyed reading, research, hiking, electronic gadgets, and recumbent bicycles. He walked a portion of the Camino de Santiago at the age of 64. His favorite hobby, however, was fountain pens. He loved his pens, inks, and paper, and was always ready to seek out “converts” to the art of handwriting. He thoroughly enjoyed producing hand-written letters sealed with custom wax seals, and transcribing famous speeches and spiritual texts using his writing instruments.

Michael is survived by Candida Maurer, his beloved wife of almost 31 years; his son Adrian (Pamela) and his grandchildren Heather and Gavin; his mother; his sister Lisa-Marie; his brother Steven; and by his step-sons Colin (Angela Sarff) Kealey and Darby (Megan Galizia) Kealey. He was preceded in death by his father.

There will be a Ritual Celebration of Life at Hotel Vetro ballroom on May 12th at 3pm.

In lieu of flowers, please make contributions to Iowa City Hospice in his name.

Per me, nihil possum facere.
(Of myself, I can do nothing)

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The Great Unknown

Then I return to the Great Unknown – this pall of death thrown over our daily lives – and weirdly, at least today, I’m grateful for it.

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April 22, 2018

Michael is finally home from the hospital. There is relief and grief in equal measures, and there is also so much to do.

Two days ago I called Hospice and within 6 hours we had a hospital bed, a commode, a wheel chair, a bath bench, a nurse, a doctor, and morphine. He’s been in so much pain – two days ago it was a “7” on a 10-point scale. Much more than I realized, or that probably anyone realized. The hospital did not give him anything for pain other than Ativan. It would allow him to sleep for a few hours but then his gut pain would waken him again.  Now we have morphine to dim the pain, thank god, and he can truly rest.

He has a large skin tear on his arm from when his Picc line was removed and no matter what we do, it is leaking fluid all over his shirt. Transferring him from his lift chair to the hospital bed was agony. Even with support, he could barely stand. As we moved the chair out of the way, and the bed into place, he was moaning loudly and almost falling from his temporary seat. Getting him into the new bed was terrifying. He couldn’t lift his legs, and when I lifted them he shouted out in pain.

So far each of the three days since he’s been home are filled with tasks, seemingly hundreds of them, and the little tasks never seem to end. Last night I heard him groaning at 3am and I was up giving him morphine and Ativan which allowed him to sleep until 7.

Empty the urinal, clean the container, bring it back. Clean the C-Pap, let it dry, reassemble it. Set up his leg therapy machine and put one swollen leg at a time into it for an hour each time. Get some coffee and food into my belly and empty the dishwasher. Bring a bit of applesauce so that he can eat three spoonfuls of it and be done. Read and answer the most pressing emails. Now he wants some yogurt but a spoonful sets him into gut cramping once again. His pain is a “5.” More morphine. But the pain continues. Add some Ativan. Now I can wash my face, brush my teeth, and get dressed. It’s 10am already! Finally he sleeps and I can write for a few minutes.

As Michael and I deepen into coming to terms with death, I realize we are also deepening into the terms of dying. And the terms of dying are manifold!

Since Michael’s second transplant, he simply hasn’t recovered the way he was supposed to. Of course there’s no actual “supposed to” here. There’s just reality. And the reality is that his gut hasn’t healed yet and he’s in a fair amount of pain. Any food, even water, brings on tremendous gut cramping and a squeezing pressure. Thankfully, morphine makes a huge difference in his level of comfort, and today he eats some broth and yogurt and applesauce — not much, but much better than it’s been.

At this point there is no way to know how sick Michael may become, and there is no real timeline for this sickness – he could live for weeks or months, or even longer. It’s possible that he will recover from his transplant, and that he will return to his pre-transplant state in which he drives the car, shops for groceries, eats very slowly, and spends hours writing and reading. He would still be tired and there are many things he won’t be able to do. It’s not been a great life for either one of us, but it’s not unbearable either.

This could be followed by the easiest death – a sudden ventricular arrhythmia. One moment Michael would be existing how he is right now, and then within a heartbeat, he would be dead. It is said to be swift and painless. This is our favorite death scenario but it presupposes that we have some control over how things go down. I’m learning not to believe in that.

Another scenario is that his heart becomes progressively weaker and he eventually dies of heart failure. From what I can tell, this can be a hard, long death. Gradually the heart becomes more and more congested and unable to pump blood adequately. The person becomes weaker and frailer and finally ends up in bed struggling to move and breathe. A difficult death by any standards.

There’s also the heart attack scenario – not painless, but certainly relatively swift. I remember a year ago when Michael talked about a heart attack as a “good end” and how much this upset me at the time. Now I look at it and realize he was right.

Other organs could fail instead and kidney failure is a common way to go in his disease. It is another slow and laborious dying – a decline in functioning on many levels with fatigue, swelling, problems breathing, and increasing toxicity.

Currently, it’s his bowel that is the problem. It is raw and painful and eating is difficult. Perhaps his bowel will never really heal and it will become unable to function. A hard death, but relatively rapid.

Regardless, it’s all fairly grim and I can’t help wondering what Life has in store for both of us.

No matter what, it’s a real balancing act. If Michael goes off chemo, which he is saying he will do, then the disease will likely progress more quickly. But at the same time, he won’t be fighting the side effects of chemotherapy, so there’s a possibility that he’ll actually feel better overall. Or not.

The truth is no one knows. No one can tell us much of anything other than what the latest test results mean at any given time. Would he have a longer life if he stays on chemo? Quite possibly. But the quality of life is low. And maybe the life quality is low no matter what he decides to do. It’s all a trade-off.

We are walking in the Land of the Unknown. There may be sign posts here but we only seem to see them in retrospect. There aren’t any real directions. There’s simply an awareness that a particular path has curved, or made a sharp right angle, or come to an end. We walk a path until it looks like it’s run out, then we look to see which path might have opened before us, and we walk on.

What we’re realizing is that in the Great Unknown, it’s all a dance of maintaining a sense of balance while watching the body become increasingly unbalanced. Trying to find the highest quality of life while one is dying becomes a huge guessing game — seeking the path that leads to a “good” death while knowing that death is the only outcome.

The biggest Unknown for Michael is death itself. His faith is being tested at the most basic level and he’s constantly up against his real experience of the higher spiritual realms versus the fear that there’s just one big Nothingness. He wonders if perhaps all of the meditations and synchronicities and guidance that he’s received are merely manifestations of an active, open, and creative mind.

This vision arises within him from time to time but I always talk about faith, how strong my faith is, and how I know that his faith is just as strong. He knows I am speaking the truth, and it calms him. It calms us both.

“I can feel my body wanting to cling to life,” he says. “It’s my body’s experience that doesn’t want to let go. That, and you. It’s hard to let go of you.” Then, two weeks ago, his body Deva tells him it is ending, tells him that it can’t function much longer. And I tell him I can make it on my own, and I can.

Then I return to the Great Unknown – this pall of death thrown over our daily lives – and weirdly, at least today, I’m grateful for it. I am being taught by Death. It is teaching me about the depths of love; about the unbreakable bond built of truth, compassion, and respect; about the deep comfort of real connection. I know that when I pass, Michael’s spirit will be there to greet me just as I will be there to greet others when they pass.

In the midst of all of this, I realize I am serving the Beloved. I am serving Love Itself. I am enfolded within Its mystery and Its blessings. My heart is so open that I cry over facebook posts, over the look on my husband’s face, over the kindness of a neighbor. He calls me “my love.” He’s never called me this on a continuous basis, but now I am his love. And I cry when I hear him say this.

As with my heart, Michael’s heart is more open than it has ever been, and this is what he came here for! Finally, as the psychic said, he is learning to receive, and he is flooded with gratitude. He cries when I read emails to him, he cries when Hospice shows up with all of their kindness and their bounty, he cries when his son does yet another thoughtful thing such as helping him brush his teeth. It’s all love now, nothing else. It’s all love.

 

Michael Speaks

It was the moment when my physical vehicle, my body Deva, recognized that it had an endpoint, and that was a certainty.

Michael

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)

The Dim Fog of Grief

We should have to stare death in the face, we should know its horrifying look, its ominous smell, its moaning sound as well as we can. Our whole life has been leading to this moment!

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April 17, 2018

My son Darby just left after five days of being here, five days of grieving, five days of relief. For the first time I am able to grieve with someone who knows Michael in the very odd particularity and intimacy of family life, someone who has loved him almost as long as I have.

As Darby leaves, I am suddenly so deeply exhausted that I can barely stand or walk. I do what needs to be done but I’m in a fog. As Darby says, “the dim fog of grief.” I eat, I walk, I do yoga, I hold the dog, I try to sleep, and mostly I visit Michael in the wretched hospital. But all of it is done within a grey cloud of awareness. Only grief and love burst through the cloud and bring heaving sobs of sorrow and joy and pain. For Michael is dying.

He may not die now, or even soon, but he is certainly dying. And now he knows this every bit as much as I have known it these many months.

As soon as Darby walks into Michael’s hospital room for the first time, he starts to cry. It is hard to see him like this but that’s how it is for someone who hasn’t seen him in awhile. Michael says, “I’m fine!” And simultaneously, Darby and I both say, “No, you’re not!” Oh how denial just slips back in so easily.

But it is stark and obvious. Michael’s body has been ravaged by this disease and he looks so ill. There’s no hiding from any of it now. He is dying.

At dinner that night with Darby, he starts talking about Michael. “He was such a good husband to you,” says Darby. “Yes, he was,” I say. Suddenly I notice, “We’re talking about him in the past tense!” It startles both of us but we also know the truth.

A week ago, Michael panicked. He was feeling particularly sick, particularly weak and exhausted, with seemingly endless diarrhea. He panics and truly realizes that he is dying. Then I panic too. When I get home, Darby calls, and I transfer my panic to him and he decides to visit. Then at Michael’s request, I call his son Adrian as well, and Adrian also decides to visit. In our panic, I find that we are calling in the troops.

That night as I meditate, a miracle occurs. I see heaven, or some muted version of heaven that appears inside of me, and suddenly I am filled with peace. I speak with Michael about our panic and about the miracle that occurred. And, miraculously, at the same time, he reports that he had a similar vision. We talk about the place that he is going to, about how beautiful it is, about how he has longed for it his whole life. Now, both of us are calm, allowing things to be as they are.

Yesterday Michael plays songs that he wants played at his Celebration of Life and Darby and Michael and I sit in his hospital room and cry together. One refrain comes through over and over, “I ain’t got no home in this world anymore.”

And it’s true. That’s what happens when the body begins its inevitable disintegration. There’s no earthly home for the soul anymore.

At times this is just horrible and exquisite torture. My feelings are so strong these days – so full of love for those who are helping us, so full of love for Michael who is clearly dying, and so full of love for what life is teaching me.

I see my husband’s body struggling for life, I see how decimated it is, how weak and painful and exhausted it is. He is so weak now. He can make it to the bathroom for more diarrhea but he has to hold onto something to do it. He gets back to bed and he is breathless, and his heart is beating hard and fast. He can only talk a little bit before he’s too tired to keep going. Sometimes when I see how his body is falling apart I find myself struggling to maintain my sense of compassion. A dying body can be an ugly and terrifying thing. I can see that he could rally through this particular crisis but he truly looks the worst I’ve ever seen him.

Then, almost simultaneously, I feel infinite compassion and tenderness for this dear old body that has changed so much, this body that is disintegrating. And for the life that is disintegrating within it.

And under everything, there is such a deep sense of sorrow and love. I have never cried so much or so deeply in my life and I am in agony. I’m also exhausted and I can feel myself burning out. I meditate, do yoga, see a good friend, and I rally again. But then I wonder how Michael can rally in the dim fog of his hospital room.

Having Darby here has made everything more real. The family is gathering to say goodbye. I feel the very real love that is coming toward me, toward Michael, toward us. And still, it’s not enough. This sorrow feels endless.

But again, once I cry, I can go more deeply into myself and finally, I feel a sense of the underlying rightness of it all. Now the dim fog clears at last. But it takes gut-level sobbing for me to get to this level of understanding. In order to truly know the hidden wisdom, the real tears must be cried.

At these times I realize that Michael’s disintegration is exactly what is needed for his metamorphosis to take place. For that’s what death is all about. It’s the last transformation. I can feel the patterns that are shifting and transforming, and I know that it is right to have this intensity of feeling now, that this level of transformation demands tears and dying and death in order for it to happen — for him and for me. This is it! This is where the meaning of a life, and of our life together, can be seen and felt and honored. And this is where it is all ending.

Then I actually know, at least for a time, that Michael’s death has an absolute goodness around it. He’s done what he set out to do, and to be, in this life. And we’ve done what we set out to do, and to be, as a couple. Those roles are crumbling away. And though I will miss him forever, I can feel that we’re almost done.

There is no escape from this. And really, there shouldn’t be! We should have to stare death in the face, we should know its horrifying look, its ominous smell, its moaning sound as well as we can. Our whole life has been leading to this moment! Whether it’s the death of a much-loved one, or one’s own death. We need to look!

These are the defining moments of a life and it’s tremendously sad, but only death can bring us to this level of clarity, this depth of wisdom, this agony of love. It’s the last and biggest transformation possible.

The wheel is turning. It is a huge wheel, and it is always turning. We blink in and out of this life never really knowing what we’ve come for or what we’ve accomplished. And only at the end can we be blessed with seeing it and maybe, if we’re lucky, we arrive at last to an understanding of the grace that has guided us all along.

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.