Telling the Truth

Finally, in a moment of clarity and pain, I tell him that I can’t do “this” for another seven years, that I will always take care of him, but I might find another house to live in, another place to stay. I know this hurts him which engenders even more guilt, but I feel I will collapse into a lesser self if I don’t say it, if I don’t tell this level of truth.

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July 13, 2018

I was walking the dog this evening when I woman I barely know stops me to express her condolences. But it rapidly becomes clear that what she really wants to say is that her husband has just been diagnosed with pancreatic cancer.

“Oh, I’m so sorry,” I say, “I know what kind of a strain that can be.”

“Tell me,” she says, “tell me what it’s really like.”

I am a bit taken aback since no one has asked me this in exactly this way, and I know she is asking from a place of real need, a place of real questioning.

As I continue my walk home I realize that I haven’t yet told the truth, or at least, not the whole truth as I now know it, of my own experience. For truth, like everything in life, has many layers and many permutations. It changes and grows as life reveals itself. I’ve been waiting for the right time, and now it appears. For more than two years I’ve been telling a partial truth but it is only now that I can begin to tell more of it. I promised Michael that I wouldn’t say much of this until after he was dead and I have honored that promise. But I have to tell the truth, for what good is any writing if the truth isn’t told?

For the past thirty-five years, I have been Michael’s partner in relative health and then, over two years ago, I became his partner in mortal illness. And for more than two years, I am his caregiver. Endless trips to the doctor, endless chemotherapy treatments, endless time in his hospital room, endless worry and stress, and endless pain of different sorts for both of us.

His body degenerates markedly. System after system begins to fail, and then fails even more. It’s hard for him to eat, to walk, to move, to sleep. He has horrible breath, his skin and muscles and teeth are breaking down, and perhaps worst of all, he’s impotent. So, we leave our lovership behind, and become more of what we’ve always been. We are best friends, living together while one of us is dying.

After more than a year of no progress with his illness, my thoughts grow darker. One of the horrors is that I find myself wishing for his death. Several friends say he is hanging on to life for me. I’m not sure if this is true, but now there are times when I close my door, sob uncontrollably, and tell his spirit it’s ok to let go. I tell his higher self that I’ll be fine, that I can make it without him, that he doesn’t need to worry about me. And maybe he’s hanging on for me, or maybe it’s for something else, something unnameable. He continues to search for a life purpose and even though he doesn’t find one, he hangs on.

The truth of caregiving, and the truth of a long dying, is that those who are closest get angry and scared and worried and burned out. The truth is that as a caregiver, I feel guilty that I can’t live up to the very real burden of caring that is placed upon me. The truth of a long dying is that I am carrying a level of burden that only those others who have endured it can understand.

For one of the heaviest burdens is supporting a person who may not be ready to look at their dying, their approaching death, and the enormous toll on those who love them. And the truth of my caregiving, the one I feel the most guilt about, is that there are times when I think about walking away. Michael continues to stubbornly project a future that lasts for five to seven more years of what we are enduring. And because I always have, I believe in his force of will, his ability to manifest, and seven more years of living together in this half-life, feels unsustainable to me, feels literally, like a living death.

Finally, in a moment of clarity and pain, I tell him that I can’t do “this” for another seven years, that I will always take care of him, but I might find another house to live in, another place to stay. I know this hurts him which engenders even more guilt, but I feel I will collapse into a lesser self if I don’t say it, if I don’t tell this level of truth. But in spite of this, I don’t leave. I can’t leave. As much as I would sometimes like to leave, I must be here for my friend. Still, it is almost unbearable.

The two years begin to feel endless. He tries not to drag me down, though I am dragged down nonetheless. He is sick and his body is literally falling apart. But in spite of this, I admire him. For the most part, he suffers well. He keeps going, keeps believing, keeps trying to do everything he can to get better. At some point last December, we are so close that I have dropped any thought of leaving him and I tell him this. I am fully committed to being with him to the end, whenever that is. There is a new level of trust and intimacy between us, and I’m ready to endure whatever life may bring.

Regardless, his treatment isn’t working and he’s not improving. At our January hospital appointment, a “salvage transplant” is offered. After several worried days, Michael decides not to pursue it. He says there is no data to support it. I am so relieved! I realize I haven’t been breathing, dreading all that another transplant would mean. Finally, I can take a breath.

We leave for Florida for a month and begin to make plans for his death. It is an excruciating time between us. And it is a time for deep healing – a time when everything is said, when all the love and pain and fear are told and known. In some ways, we are the closest we’ve ever been. We come home with my belief that we are now on the road to Michael’s long degenerative death.

Then, at our next medical appointment in March, the doctor dangles a second stem cell transplant in front of him again. The doctor tells Michael it may “improve his quality of life.” These seem to be the magic words and when the doctor leaves the room for a moment, Michael literally whirls his head toward me with the most intense look I’ve ever seen. He wants this transplant! Even though he said he didn’t want it two months ago, now he wants it.

The doctor re-enters the room and I ask the pointed questions that Michael isn’t asking, the questions about the potential effects of the second transplant.

“Will the swelling in his tongue go away so that he can eat more easily?” “No.”

“Will the swelling in his legs improve?” “No.”

“Will his skin improve?” “No.”

“Will the deposits in his heart dissolve?” “No.”

“Will the deposits in other parts of his body go away?” “No.”

“Will his impotence disappear?” “No.”

“So, what will get better?” “It is likely that he will have more energy.”

I am appalled. I think to myself that this isn’t worth risking what life he has left. But Michael wants this, and as I sit in numbed and shocked awareness, he agrees to another transplant.

Another transplant, after I thought we’d spent the past month coming to peace with his dying. Another transplant, meaning weeks in the hospital while he clings to a slim thread of hope and life. Another transplant, which may literally kill him but which offers the possibility of “more energy.” Another transplant. It feels foolish and stupid and wrong, and then I am angry. I want to scream at him, “Can’t you see you are dying? Can’t we just get on with it?”

But I don’t. He can’t see it. Not yet. It’s too much to believe, too much to take in. So, I agree to help him. I agree to back him up as completely as I can.

So, this caregiver becomes a cheerleader, a false witness to a process that is so obviously flawed, and so obviously painful, that the truth, the whole truth, can’t be said clearly enough. For when does one support the quest for a cure, and when does one say it is foolish? When is it honest to say what one sees and feels? And when is it simply cruel? And, really, what can anyone say about another’s desire to keep trying to live?

Relationships, real relationships, are far more nuanced than any story can tell. Real relationships involve compromises and choices and changes, some of which literally lead to life-denying patterns and pain.

Ultimately, it doesn’t matter. He dies 32 days after the transplant and he is gone. Does our change in relationship mean I don’t grieve deeply and truly, that I don’t suffer in my heart and soul? For surely, I do. I have lost my best friend and I miss him with an intensity that surprises, scares, and humbles me.

A few weeks ago, I found a letter that Michael never sent to me. It was roughly written in one of his many notebooks while he was still in the hospital, and it was dated two weeks before he died. He’d had a particularly awful day and in it, he said he realized that he was dying and he had accepted it. He felt he still had a fair amount of time to live but he was philosophically open. He was in and out of deep and frequent meditations at that point and he knew he was going to a place without a body, a place without the pain of earthly existence.

He apologized for putting me through all that he had put me through, and he wished for me to find my freedom and my peace. The letter ends with this: “Wherever I am, whatever I am, know that I hold you close in my love and consciousness for all eternity. (Imagine the hubris of that statement!). But if it can be stated in truth, I’m saying it with all my being.” These are the last words he ever wrote and they always make me cry.

We came together as soul mates, and he died as my soul’s companion. My mind flashes on our last moments together every single day. He died with our last words being words of love, words gasped out in the final terrifying minutes of his life. I’m so glad for this, so filled by it. I believe he had a beautiful death.

Clearly, our souls were meant to be together, to accomplish certain things together, to love and learn together. But our mission is over now. Knowing the depth of Michael’s soul, the depth of his spiritual practice, I can only assume that he accomplished what he was meant to accomplish. I can only assume that he was done with this life.

So now I can tell the truth. The truth of his illness and his impotence and how it confined our relationship, the truth of my reluctance to fully commit to seven more years of our half-life together, the truth of his fears and his final acceptance of death. And ultimately, the truth that love takes many forms. For we loved each other, through all the missteps and sorrows and joys, and in the end, it is all that matters.

Letting Go

The disaster drives me some days. I can feel its sharp bite on my heels and I want to do something, anything. Something to make the pain less intense, less pressing, less overwhelming.

 

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A minuscule sampling of the stuff in Michael’s study.

June 8, 2018

There’s a kind of desperation in me some days, a desperation to be done with this pain, this horrible and unimaginable emptiness of loss. Michael has been dead for 44 days now, and I count the days wishing they would move more quickly, wishing that this pain would stop. It’s a far worse grief than when Michael was still alive though at the time I didn’t know it could be any worse. But it is.

A friend of mine likens this loss to an earthquake, another calls it a tsunami, and I read an account that calls it a tornado. These feel right to me. All are natural disasters. And that is exactly what death is – a natural disaster – one that literally brings us to our knees.

The disaster drives me today. I can feel its sharp bite on my heels and I want to do something, anything. Something to make the pain less intense, less pressing, less overwhelming.

I go to the jewelry store to get my wedding ring re-sized so that it will fit on my little finger. It’s the heart meridian finger in Chinese medicine and it seems appropriate. A place to put the symbol of our love — Heart fire.

As I’m speaking with the woman behind the counter she says that maybe I’d just like to buy a smaller ring. I say that I can’t, that this is my wedding ring and I begin to cry. I didn’t expect to cry here today. I thought I was doing ok, and now I am crying in a store in front of a complete stranger. Thankfully, she is calm and kind and offers exactly the right kind of compassion in this moment. I put my re-sized ring on and immediately feel that it is heavy and awkward there. The woman notices and says, “Don’t worry, you’ll get used to it.”

Then there are the days when I’m fine. I mean that. I’m just fine. Or not whole days really, but hours of being truly involved with life’s swift flow, enjoying the rush of people and experience, the quiet eddies, the deep pools of contemplation and relief.

But the desperation is what I’m working with today. I can meditate, but just barely. I can do yoga, I can walk, I can read a bit, and still the desperation for this grief to move on, for things to change, is there. It is asking me to let go.

But the truth is, there’s nothing I can do. The only thing that really works is to sit with it. To allow its sharp teeth to bite my heart, to let it bleed once again, to cry the red and blue tears of deep grief.

In my desperation I’ve been cleaning out Michael’s stuff, trying to make this space my own, hoping that as I do so, I will begin to move into this new life more fully, more peacefully. Yet there’s so much stuff that it’s taking far longer than I thought it would. How can that be true? I lived with this man for so many years and yet I am finding more “stuff” than I ever knew about.

My dear sister volunteers to help me move his things out, thank god, because I truly can’t imagine facing this alone. I have tried. I walk into his study, look around, move a few papers, and walk back out again. It is simply too much.

I’ve discovered that Michael was a pack rat! Far worse than I realized – a real pack rat, a hoarder of small things, useless things, funny things. For instance, in his study we found over 300 blank CDs. 300! Package after package. Clearly, he’d thought that he was going to make lots of recordings. In his struggle to find a purpose, he thought he would create meditation CDs. It’s a grand and completely outdated idea but here I am, stuck with 300 CDs and it feels horribly wasteful just to throw them out. Yet, I literally have no use for them. None. I keep them for now, waiting for my brother who says he “knows a guy” who will use them.

In the bathroom closet I find 22 boxes of band aids. Admittedly, Michael was bleeding easily and often. Brushing up against even tiny protuberances led to abrasions that might not heal for weeks, and band aids and gauze and tape were all needed. But there are 22 boxes of band aids for me to deal with. Many are opened but still full, and many aren’t even opened.

I can only imagine what he must have been feeling. His anxiety over bleeding must have caused him to buy band aids whenever he went to the store. Just one more box. In case. Simply forgetting that there are already many boxes at home. So, he’d use the latest box once or twice, push it back into the chaos of his bathroom closet, and buy another box. I take a huge bag of supplies to the Free Medical Clinic.

Then I find, buried in a file cabinet, every card I’d ever made for him. Years and years of homemade cards, some better than others, but each made with love, a way to express my feelings for him. I look through them and find birthdays, and anniversaries, and solstices. I cry when I find them for they were clearly precious to him. And then I realize that I doubt he ever got around to looking at them again. There’s so much stuff here that all they could be is another thing he is hoarding. And yet, and yet, there was such love between us.

Finally, after many days, his study is beginning to feel clear — except for the books! There are still many books, some to sell, some to give away, some to keep. It’s arduous going through them and it’s arduous letting them go. For I know he loved his books.

There are books on languages – Chinese, Japanese, Italian, Spanish, German, Latin, and even Esperanto. He spoke all of these a little bit, and he knew German and Latin really well.

There are many books on Western mysticism and magic, books on Kabbalah and tarot, books on ancient and hidden archeology, books on Chinese medicine and herbs, books on energy healing, books on astrology, books on music, and more books and books and books. There are also 10 decks of tarot cards. 10 decks!

It feels almost sacrilegious to be going through his books, his things, in this way. He treasured them, and for him, they held the knowledge he loved and acquired through decades of devoted study and learning.

And yet, I also know that I am not going to invest in several new areas of learning. I’m not going to study Hinduism or Vedic astrology or Chinese medicine any more deeply than I already have. These are not my books. And though I see their value, I can’t imagine lugging them around for the rest of my life.

For that is what I’m looking at now – the rest of my life. Michael has been dead for 44 days, and I’m looking at the rest of my life. I’m still counting the days, and now, the weeks, and I find that this is common for those who have lost a loved one. We count the days without them. The inexorable time slipping away between us, the subtle shiftings into the past tense, the memories becoming more distant and more abstract. I’m looking forward to a time when I can count the months rather than the weeks, and maybe someday, count the years rather than the months.

But there is also the sense of not wanting to let go, not wanting the memories to become abstract and distant. There’s a sense of scrambling to keep him close, to hold him in some secret way, to talk about him, to write these words. There’s a desire to keep his things, his messy things, to create a mausoleum of Michael. As a person who values order and calm, I cannot keep these messy things, these things that are not mine, these things that no longer belong. Slowly and surely, I am losing him and there’s no way to keep him close. Things are changing and there’s no going back.

I wait for the next earthquake with trepidation, wishing this awful shaking would be over, but knowing it is not. I cannot  prepare for them. There’s no safe place to ride out this kind of disaster.

My ground has been shaken and it will shake again — maybe in a store, maybe with a friend, maybe sitting alone at night watching a sentimental movie. I will be shaken again in the inevitable grief and loneliness of profound loss. And maybe it’s the shaking that actually does it — that makes me tremble, that throws me to my knees, that allows me to realize that this earth is not the place to put my faith. Maybe the shaking is finally deep enough that it allows me to let go.

Laying Out the Body

Warning: this blog contains graphic details and pictures of laying my husband’s body out prior to cremation.

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It is April 25th, 3:20am, and suddenly I am wide awake. I have been sound asleep for the first time in days, but something is waking me up out of my sleeping pill stupor. I still have the sound-deafening headphones on to block out the barking dog across the way. And yet,  I have heard Michael calling me and I am wide awake. I find myself almost running out to the living room where Michael’s hospital bed is located.

He’s struggling for breath and he cannot talk. I can see that he couldn’t have called me, but he did “call” me at another level, and I am here. There’s a deep rattling in his chest and it is terrifying. He’s gasping for air. I run to the other room to get the oxygen machine that we haven’t needed until now. Luckily it’s all hooked up and all I have to do is fit the tubing into his nose and turn it on.

But there’s no relief. The rattling and gasping and struggling for breath continues. I think he is dying but I can’t stop to think too hard. I begin to do emergency energy work to make it easier for his spirit to leave his body. I’m opening his crown chakra, his throat, and his heart. But I go back to the crown again because that is where my hands are pulled. His spirit needs to fly out of his crown.

Now I’m crying and my tears are falling on his bald head. “I love you so much, I love you so much,” I say over and over. I know this is it. I know he is going now. He gasps out, ” …love…you…,”  his eyes roll up to the top of his head and now only the whites are visible. There is one last shudder and his eyes slowly roll down again. He is gone.

I am completely stunned and I cry for a moment, but then I sit on the couch. A sudden stillness comes over me and I am drawn into deep meditation. Eventually I call Hospice and they send a nurse over to declare that Michael is dead.

Michael wanted his body to be left undisturbed for 24 hours after death and of course I honor his wishes. I touch his forehead and already it’s getting colder. It doesn’t feel like living flesh.

I sit quietly until my brother and his wife awaken to go home to Colorado. They offer to stay but I tell them it’s fine for them to leave. I need to be alone. Finally, I call my friends Bob and Merrilee to come sit with me. It’s been five or six hours since his death now, and I realize I’m in shock. My friends arrive, and some time goes by. They tell me I’ve spoken with my sons, and with Michael’s son, that I’ve told them that Michael is dead. They tell me I’ve taken lots of homeopathic flower essences and that I don’t need any more of them right now. I don’t remember any of this! I’ve never felt like this before. I really am in shock.

Then I call Kathy to come over. When Kathy arrives she immediately takes charge. She asks Bob and Merrilee to get some food for me and then comes and sits next to me on the couch. I don’t feel like eating but I’m told to eat anyway, to drink water. After a time of sitting she says, “We have to do something with his body.”

“OK,” I say, “but what?”

“I don’t know … but something.”

She sits awhile longer. Bob and Merrilee return after getting me more food.  Once I’m fed, I’m finally exhausted and I think I can sleep for awhile. They see that I’m taken care of and they leave. Soon Kathy also leaves to “get supplies.” I lie down, so tired that I literally feel numb all over. But I cannot sleep and I do not sleep. I lie in bed trying to meditate, trying to remember talking to the kids, trying to realize that Michael’s dead body is lying in our living room. Nothing feels quite real.

Michael’s been dead for almost 12 hours when I hear the door open and Kathy is back, her arms loaded with “supplies.”. There’s a beautiful red silk sari from India and two bolts of silky material from the fabric store, one olive green, one a light cream color. She’s also brought a special soap. She says, “We are going to bathe him and wrap him.”

I really can’t think very well but I say “ok” and Kathy begins to fill a tub with water. “What are we doing?” I ask.

“We’re bathing him first. Do you have any essential oils?”

Of course we have many essential oils but I immediately know that he should be bathed in frankincense. It’s one of his favorite scents, maybe his only favorite scent, and I go to get it from the shelf in the treatment room we have in our basement.

We start the process by stripping off the pajamas he is wearing.  Now Michael’s body lies naked and vulnerable on the hospital bed. It’s him, but it’s not him, and I don’t feel embarrassed that Kathy is seeing his body like this.

“OK,” Kathy says, “First we have to plug his anus up so that it doesn’t leak out while we bathe him.” I watch as she deftly and efficiently stuffs cotton into his butt. There’s nothing remotely wrong with this which amazes me a bit. I mean, another woman is putting a plug of cotton in my husband’s anus. But nothing seems out of line now, nothing seems too odd.

We get some warm water and the special soap that Kathy has brought with her. I add the frankincense to the water and we begin to wipe him down very gently with washcloths and lovely scented water. Since he is lying on his back, of course we begin with the front of his body. It’s stiff and cold, and I mean really cold, and I find it odd that it’s already so dead feeling. But then I realize that this is exactly how it should be.

Kathy begins to wash his genitals. His testicles have been enlarged for almost 2 years now, and his penis has gradually shrunken into itself until it almost disappears. As we move the testicles aside I see that his skin has been breaking down in the area between his testicles and his legs and it makes me sad. I didn’t know about this, I didn’t help him with this, and then I realize that he probably didn’t know about it either. We gently wipe away the dead skin and I see the raw skin beneath it.

Now it’s time to roll him over but first the water must be emptied. It’s dirty and we need clean water. Kathy has read that the water shouldn’t go down the drain but should be emptied onto the ground. She goes outside to our front garden and dumps the water not realizing that the bar of lavender soap is also being dumped on the lawn. She comes back in and we watch as a crow finds the bar of soap, pecks at it a bit, then picks it up and flies away with his new prize. I’m wondering what this metaphor signifies but I don’t take the time to examine it now.

Regardless, Kathy gets some fresh warm water and we turn Michael’s body onto its side. As we do, there is a gush of black liquid that pours out of his mouth and nose. It is really black! And it has chunks of black material in it and it is horrfiying. Part of my mind is wondering what on earth it is, while the other part is trying not to freak out over the awfulness of it all. The larger part of me realizes that death is not pretty, that this is part of bathing the dead, part of bathing Michael’s body, and thankfully, I am able to continue to do this strange and sacred work of laying out the body.

We are both taken aback, of course, but Kathy, being a midwife of longstanding, just gathers up the sheet, the mattress pad, and the pillow out from under him, and I take them out to the garbage. When I return, she has plugged up his nose and mouth with more cotton. It’s kind of odd looking, but completely necessary. I can already see more of the black liquid collecting on the edges of the cotton in his nose.

As we turn him, I notice a bed sore on his shoulder that I hadn’t seen before. And again, I realize that I don’t think Michael knew about this sore either. There were just too many things going wrong with his body – a sore on his shoulder was almost nothing.

We efficiently wipe down his back and his feet and dry him off. Or dry his body off. It’s a weird juxtaposition. It’s Michael’s body, but it certainly isn’t Michael. It’s a little hard to remember this. Once his body is cleaned we begin to work the red silk sari under him so that it covers the entire bed and hangs down on the sides.

“What now?” I say. We take a little break which is good. This is pretty intense work we are doing  and I realize we are midwifing death. “Deathing,” I think to myself, “We are engaged in deathing.”

Then we’re back at it. Kathy clearly has a vision here and so now it’s time to get the cream-colored silk under and around him. It’s hard work moving a dead body that has been beset by rigor mortis. It had been lying at a weird and uncomfortable looking angle and though Michael certainly can’t feel this discomfort, we feel it, and we move him to a more natural position. We manage and soon there is a full body wrap of this lovely creamy material around him. Already, I can see where we’re headed and it’s beautiful.

Now it’s time for the olive green silky cloth and we wrap it under him, around his shoulders, and begin to make a robe-like thing of it. Kathy carefully folds the fabric as if it is some special garment, for that is exactly what it is. We both notice that Michael’s head looks uncomfortable since the pillow got taken away. I find an old pillow and wrap it in the same green material and slip it under his head. He looks much better now. Regal, even. Comfortable and regal.

Kathy takes the cotton out of his mouth and nose and gently washes off the remaining black liquid from that area. Now I realize it’s time to build an altar! Michael and I have built many altars over the years to mark important moments, and God knows, this is one of the most important.

We need to represent the four directions. In Western mystical tradition, East is for Air, South is for Fire, West is for Water, and North is for Earth. We go outside to find some representatives for the elements. The Coffee Bean tree gives us some unusual brownish red rattling pods to use, and I grab a black stone and a piece of rose quartz for love. Along with a green candle, we’ve now got our earth element.

Fire is easy. I’ve got a red ceramic bowl made by Michael’s granddaughter and I put a heart-shaped red candle holder in it. It’s perfect for this. For Air I have feathers, beautiful feathers that Michael and I have collected on many of our hikes in various locations. I grab the eagle feather and the owl feather. I fill a shimmering blue glass vase with water and daffodils for the Water element, and I get more candles. This altar needs to shine!

I begin lighting the candles for the sacred circle, always going clockwise, starting in the East with the color yellow, the dawning sunlight, the archangel, Raphael. South is red for fire and Spirit and Archangel Michael, West is blue for water and emotions and Archangel Gabriel, and North is green for earth and Archangel Uriel. I light a white lotus candle in the center.

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Now it becomes clear that it’s time to say a few words, words of prayer and peaceful passage, words of gratitude. I am crying wholeheartedly as I do this. I am so grateful to have had this person in my life, this beautiful man, this Michael. Such a blessing. I already miss him so much. I cry and pray.

Kathy is doing her own thing with prayers and it’s clear we both feel the holiness of this moment. We both recognize that we are in the midst of the Sacred, and now is a time for kneeling at the feet of God in whatever way we can.

We take some pictures. We’ve been at this for hours now and I want to remember this forever. I know we have just done something important and something magical. We have taken some kind of raw intuitive guidance from the deepest mystery. I feel hushed and stilled by the beauty of this moment. I am filled with awe at the supreme honor of laying out this body for its final end.

Now at last we blow out the candles and we sit quietly for awhile. Kathy asks me if I want her to spend the night and I say no. I really want to be alone. Once she leaves I sit beside Michael’s body and meditate once again. There is peace and a profound sense of goodness here, and I sink into it as deeply as I can. I feel surrounded by love.

Finally, I rise and kiss Michael’s cold forehead goodnight before going to sleep. “Goodnight, Honey,” I say just as I have said so many times in these past 35 years. Suddenly I realize this is the last night that I will touch him and I cry again and then go to bed.

The Cremation Society will come at 9am the next morning to take his body away but I know that the real work has already been done. Michael’s body has been cleansed and wrapped and laid out, his spirit has been honored as deeply as humanly possible, and the Great Powers have been called upon on his behalf. All is well now. All is truly well.

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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.

Screen Shot 2018-04-22 at 9.16.54 AM

 

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.