Resting In Peace

October 8, 2018

My son, Darby, and I take a trip to the Pacific ocean, the ocean of peace. Our intention is to release the last of Michael’s ashes into this great sea, to forever blend the molecules of his Being into the vast and sacred water.

I bury some of his ashes in the Appalachians on the new moon in August. He loved those mountains, as did I, and I found a huge, ancient oak for the resting spot. In September, under the full moon, I bury most of his ashes in our garden along with several small mementos of his life. Now it is the new moon in October and I am with my son who loved Michael as a father, loved him in his own way. It is right that we are doing this together.

We find a perfect beach — almost no one around, tide pools, clean water, good waves. I know what I want to say, and I wade into the shallow surf until I feel I am standing exactly where I need to stand, water washing over my ankles, beautiful stones at my feet in the sand. With three handfuls of ashes I thank Michael over and over again for leaving me so well.

“Michael, thank you for leaving me physically safe and comfortable in my beautiful home.

Michael, thank you for giving me emotional sustenance, for giving me confidence, for giving me what I need to move forward, for believing in me.

Michael, thank you for supporting my psyche and my thoughts, for listening to my truth even when the words were hard to hear.

Michael, thank you for demonstrating the power of meditation to calm the mind and grow the soul. Thank you for teaching me to trust my spirit every single day.

Michael, thank you for dying when you did – leaving me enough time to get used to your going, and not so much time that I was unable to function.

Michael, thank you for loving me as I loved you.”

I cry throughout, my salty tears blending with the salty water. And now it is Darby’s turn. He has witnessed my ritual, and he does his own honoring with the ashes that are left. He is silent, though there are tears in his eyes as the last of Michael’s ashes are released to the sea.

On the way back from the ocean I find myself in a common argument with Darby, arguing that he needs to give me credit for hanging in there with Michael, for not leaving. I had told Darby of my thoughts about leaving Michael over a year ago. But Darby’s belief is that there is no real choice — you stay with your loved one when they are dying, even if the marriage has become relatively empty, has become friendship, has become physical caregiving, and emotional toll-taking. You simply stay!

I say that Michael understood the toll his illness was taking on me. In fact, Michael was the one who first brought up the idea of me leaving. “Babe, if you need to leave, if you just can’t do this, I understand. If you need to leave, then you should go.”

He said this early on in the process, and I knew he meant it. I was free to leave if I wanted to, but of course I couldn’t imagine doing such a thing at that time. And even then, I knew that we had both created and agreed to the situation, that we were both being tested in exactly the way we needed testing, and I stayed.

But I argue with Darby that there is a choice all along. That each day is a choice, that each act of giving care is a choice, that each moment is a choice that speaks to one’s ability to remain stable and kind while walking through hell.

Though my son seems to recognize the choice, he doesn’t really see it. How can he? He has never had to do anything like this.

He says he would do the “right thing.” For him, there is only one path, and it is the path of staying the course. I say that there are many who do not make this choice. Or that if they choose to stay, they stay with resentment, denial, anger and guilt. I insist that he give me credit for the choices that I made, and finally, reluctantly, he does.

But I can feel the reluctance and I come back to it. He says, “Mom, this is your issue. You keep bringing it up!”

And at that blessed moment, I see it all. For a moment, I see the entire crucible of my life with Michael. All the patterns, all the pain and joy and sorrow, all the ways in which I have tied myself into knots over his dying and death. And in that moment, that elusive clarity, I say, “I think I need to give myself credit.”

Now I am quiet, I take a deep breath, and I let this sink in. I’ve been feeling guilty. My child self has been back in her old mind-set, the one that says no matter what she does, it isn’t enough. It is never enough. And the cost of never being good enough is guilt. For almost six months now, ever since Michael died, I’ve been feeling this niggling and obscure sense of wrongness playing in the background, this sense that I didn’t do enough, or that I said too much.

I feel the horror of telling Michael that I am so unhappy that I have thought about living elsewhere, and now it really hits me. I thought it, and finally, as an act of desperation, I said it! I felt I was drowning, that my spirit was dying, that I couldn’t sustain our situation, and I told him. A crashing sense of regret and sorrow overwhelms me for a moment. How could I have said these things to this good man? To this great soul? How could I tell my dying friend that I was at a point in which I wanted to leave?

But then I know that if I hadn’t told this truth, if we hadn’t had the kind of relationship that would allow this level of truth between us, my soul would have shrunk inside of me and my heart would have closed. I would have stayed, but I would have stayed with a frozen heart.

It all becomes clear now. I’ve been feeling guilty and angry at myself for telling the truth! And feeling angry at Michael for putting us in this terrible and inescapable hell in which the truth I have to tell is painful and deep. I am angry that I dared to speak what my heart simply had to say.

Though I said all along that telling the truth, that being the emotional truth, was the most important part of Michael’s illness for me, I feel guilty that these were my feelings. But then I know that the only way I could survive his dying was to be honest about its effects on me and on us.

I think he knew this. I believe he understood this. I know he loved me, and to love me inevitably means being able to stand in whatever truth I glean and share from this sometimes difficult life.

I flash back again to his last moments on this earth, to his desperate struggle for breath, to his eyes rolling up in his head, to his last words: “love…you….” He died so well. He died with love in his heart and soul, and I was blessed enough to witness this love and feel it in myself. I am consoled by this.

For the first time since his death, I know that my guilt is simply my guilt. It wasn’t what Michael felt. It wasn’t what he took with him. He left this earth in love. And he wanted me to be happy. He said it many times, “I want you to be happy when I’m gone.”

And now, I begin to clearly allow this love to be what I am left with as well. There are tears rolling down my face as I feel into this truth. After almost three years, I finally let myself rest in peace.

 

God Is Not A Masochist

August 20, 2018

Three days ago, I didn’t cry for the first time in almost two years. I didn’t know this until the end of the day when I was reading in bed and suddenly became aware that there had been no tears that day. Then I obsessively counted the days, for I remembered being dry-eyed on the 18th day after Michael’s diagnosis. So, it’s been 728 days since I haven’t cried. It made me wonder if I’m moving into a different phase of grief, and perhaps I am.

I’m realizing how small a thing is Michael’s death. For more than 2 years, his living and dying has been so central to my world that it’s sometimes hard to remember that others aren’t in the same place.

Of course, I know that they are not, and I’ve known that all along. There are only a few of us who are deeply affected by any death, and of those few, I am the one most affected by Michael’s death. It’s the way it is and it’s the way it should be. But I’m realizing how small his death really is.

In the past few days I have heard from a neighbor about the imminent death of her granddaughter’s mother. I’ve heard about a woman whose husband was diagnosed with pancreatic cancer and died only two weeks later. I know a woman whose father, father-in-law, and dog all died within a few months of each other. Death is all around us, all the time.

And the death of a single person, while terribly sad for me, is just the death of a 68-year old man who loved and was loved by his wife, his family, and a few close friends. And isn’t this what all of us get if we’re lucky? Isn’t this just how it is?

As much as all of this is true, it doesn’t change the sometimes desperate loneliness that engulfs me. I am more alone than I have ever been, and there’s a strong bend toward isolation and numbing out. Fortunately, my worst addiction at this point seems to be too much time with mediocre television and old movies, and I figure as isolation and numbing go, it’s not so bad. And to some degree, my isolation is by choice.

Thankfully, there are beautiful, kind people who offer their company. Sometimes I take them up on it, and sometimes, I do not. I’m so grateful for their reaching out, so grateful that many make the attempt to keep me connected to life. But this latest phase of grief seems to be about finding the healthy mixture of solitude and company. For often I end up feeling lonely when I’m with others, and then I make a concerted effort to stay engaged, to be truly touched and touchable, and for the most part, I’m successful. Of course, the person I’m really missing just isn’t here, and there’s simply no replacement for him.

One thing I know now is why widows and widowers often die soon after their spouse is gone. They are literally lost, literally unable to function, literally anchorless. I don’t feel quite this intensity of lost-ness myself, but I can feel the pull of it, and I understand.

Similarly, a woman I know said to me this week that she’s aware she’s been spending her whole life waiting to be rescued! This really hit me, for I have had the same feeling. It’s ancient and unreasonable and a complete fantasy, but it’s there – I’m waiting for rescue. I discover it lurking beneath my tears these days, and once I discover it, I’m usually able to let it be, and fortunately, I don’t act on it. But still, it’s a strong feeling, a deep and usually unconscious desire.

As little girls, many of us were raised on fairy tales. In these tales, there was always a beautiful princess who is rescued by a handsome prince. I don’t know if little boys bought into the handsome prince story, but I completely bought the princess scenario.

My fantasy life was filled with the Prince. As a child, I would ride in the backseat of the car on the endless trips to our grandmother’s house in Waverly, Iowa, and dream of the Prince, coming the other way on the highway in his car, somehow traveling through rural Iowa. At some point, I would always lean up against the car window so that I would be more visible. I knew that one day, quite suddenly, he would drive by and happen to glance into our car as he passed, and of course, he would see me! Immediately, he would know that I was to be his Princess. He would stop us, take me into his car, and rescue me forever from my wretched life. It was all quite dramatic and totally unbelievable, but it held my attention for years. I think I can even say that my first marriage was my slightly-matured version of this fairytale.

My “mature” version is that somehow Michael isn’t really dead, or that his Spirit is so strong that it comes through to guide me, or even that some other Prince is driving down the highway looking for me now.

It’s all ridiculous, and I know it, but it’s part of the subtle experience of Michael’s loss that I am currently working with. It’s the Child Self’s sad realization that there is no “rescue,” that this is real life, and that this is exactly what I signed up for. It’s a blessing to know this for it allows me to observe these feelings rather than to believe them. And like all feelings, they pass, and the Higher Self is left to watch them passing, and to be at least a little bemused by their intensity.

Clearly, part of the lesson is learning to live with loneliness without being taken under by it, and part of it is finally loving myself enough to grow up.

I just returned from a week-long meditation retreat in which the teacher stated that as far as he knows, “there’s no upper limit” in terms of consciousness and how high we can go. I feel that now. Growing up is never complete, for consciousness is infinite and alive, and as much as we grow, it is always outgrowing us.

I feel that at a spiritual level I have asked for this crash course in independence, and I’m getting it. But it is a “crash” course, and it is sometimes startling, terrifying and bruising. Regardless, it’s important for all of us to be as awake as we can be when death arrives at our door. I’ve signed up to be challenged to go more deeply into my spiritual center, to ride these waves of grief with as much consciousness as I can summon, and to delineate this journey with whatever truth and clarity I can embody.

My friend Fran always says that “God is not a masochist.” Think about that for a moment because it gets deeper as you do. From the highest level, the first implication is that God is Good and that we can have utter faith in that goodness. The second implication is that God never does anything that hurts God, meaning that any death, all deaths, are part of a greater plan. The One thing is always evolving, and even if we don’t understand Its movements, It is always growing toward the higher Good. Finally, it is a statement of absolute trust in the unknowable evolution of consciousness.

I cling to this idea at times when I’m overcome with sorrow, and I meditate on it in times of peace. God is not a masochist. And finally I understand, neither am I.

Telling the Truth

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 four 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 degrades 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 of his formal treatment 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. Instead I gently tell him that I’m not sure this transplant is a good idea, that I am worried that it will kill him. But 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.  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 back to 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.

Laying Out the Body

It is April 25^th, 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 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 hard 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 realize that I 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,  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.

Now 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, 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. 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 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.

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 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.

In Memoriam

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.

While 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 — the card of transcendence. 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 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 25^th, 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 3^rdeye 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.

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 home.

 

 

He is Gone

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)

——————————————————————————————————————–

The Great Unknown

 

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.

 

Pre-Planning

3/11/2018

Our trip to Florida isn’t anything like I thought it would be. We both hold the fantasy that Michael will magically feel better, that the ocean will buoy us up, that somehow we will recapture our old selves in our shared experience of this magnificent beauty.

In this other environment, this “pattern accelerator” as Michael calls it, almost nothing is as it has been before. I do most things alone because Michael really can’t go with me for our usual hours on the beach – walking, wading, picking up shells. I have to see the reality of the change from this year to our last trip two years ago. And now I see it.

Instead, Michael is sick much of the time. The doctor keeps him on one of his chemo medications and by itself it causes a huge amount of water weight gain. He is heavy and tired and sluggish. It’s a major effort for him to walk to the beach, and all we can really do together is talk, play scrabble, and watch the tube.

This is a real wake-up call! No matter how beautiful it is here, no matter how healing it is to be at the ocean, no matter how much we want things to be the way they once were, they have changed and our old selves are gone. About half way through our month away I open the door to another hard conversation about the future.

The day before we had seen a TED talk in which a man speaks about the American way of death. He says that though virtually everyone wants to die at home, six out of ten people die in the intensive care unit of a hospital. Another three out of ten die in some kind of assisted care facility while only one in ten actually ends up dying at home. Additionally, only one out of a hundred people actually know that they are dying as they die!

This really brought our death plans to the forefront, plans that I thought we’d made but that I realize now we haven’t made at all. The TED talk sits with me most of a sleepless night and I know we have avoided dealing with the painful and necessary stage of “pre-planning.” In the middle of the long night I meditate and know that we have to move forward.

Today I say, “I think it’s time we start to look at what the options are around burial.” I state this with a practiced sense of straight forward confidence, but inside I’m feeling a sense of unreality and fear.

Michael is the kind of person who responds to this suggestion without getting scared or defensive. I know he’s thinking about these same things but he isn’t talking about them. “What do you mean?” he says.

“I think we should contact some funeral homes and see what the options are.”

“OK,” he says. And that’s that. Since I’m the person in our relationship who does much of the online research around death and dying, I start getting information.

This means contacting the local funeral homes about the cheapest and easiest cremation possible, for this is what Michael wants. We’ve been shocked to discover that at one of our local mortuaries even cardboard box cremations run well over many thousands of dollars. But even with this surprise, I can’t help thinking, “Oh well, it’s all part of the process. This is the American way of death.”

The “pattern accelerator” that we’ve always found at this ocean continues to work overtime and we spend the day looking at what to do with ashes, with what remains of Michael after he’s gone. We look at the “Columbarium” in Oakland Cemetery, we think about selling the burial plots we bought 25 years ago since granite markers now seem beside the point. We look at planting a tree from his ashes. I spend several hours looking at online urns, glass art made of cremains, and cremation gemstones.

It’s a huge business, these mementos of a loved one’s passing. I find that for several hours I can let myself be involved in the beautiful gems and the luminous glass art that I can make of Michael’s ashes while he looks at large varieties of online urns. We talk about it and I show him some of the art that’s been made of ashes. It’s all very calm and chummy, even fun, and then suddenly I realize what we’re doing and it all comes crashing down. My heart is thunderstruck by the calamity of loss, by the looming emptiness of his passing.

“It’s all just stuff!” I say, and I start to cry. Michael knows exactly what I mean. He comes over and hugs me and we cry together. It is this being held that is real and raw and true.

But what I’m really being struck by is the whole idea of being able to “pre-plan” for death. We all want to have control, and it actually makes sense to think ahead, to have things done that can get done, to face into what the loss will mean in its small and necessary details.

But can any of us ever really pre-plan for death? I mean, I feel I’ve been preparing myself for a long time now. I’ve seen Michael’s death a thousand times. And I know that he has too. And yet, neither of us has any real idea of what his dying and death will be like. This is only my ego talking, only my ego trying to prepare me for that which is beyond control. And if this time has taught me anything it’s that there is no control over dying and death, and really, not much control over many of the events that happen to us in this life.

I feel my fear scrambling to protect me from the inevitable and I realize that the writing, the art, and the deep conversations are all an attempt to face into, and also to avoid, the pain. But there is no escape. When it actually happens, I have no idea how I’ll respond.

I ask Michael to write his obituary because there are things about him that I don’t know – and I certainly don’t know what he wants to have said about himself after he dies. He spends several days at this, and when I finally read it I know that it is a wonderful remembrance of his life.

So now we have ideas about cremation, about ashes, about obituaries. But there’s really no way I can “plan” for the event of his death, or for that matter, the event of my own. I find myself moving again into the vast realm of not knowing which seems to be the only true place to anchor myself. It’s a hard practice, finding an anchor in the Unknown, but as I keep learning, it’s the only practice worth doing. It forces me to choose to have complete faith in the process that’s unfolding.

I go back to meditation and I’m taken to a wide open field, opaque and yet brightly lit. There is a continuous fountain of evolving energies arising in this openness, unformed and wild. And, paradoxically, there is nothing here but the confrontation with mortality and the absolute certainty of love. In this place I am told that this is how the Mystery awaits us all, a sudden collapse of events bringing an end to the body, a bright loving light guiding the soul into the unknown.

Living with Dying

 

2/22/2018 at Cape San Blas

Received from a friend:

I recall as though it were yesterday seeing Michael on a number of occasions answering a cell phone call from you. It was so touching to see the expression on his face — gentle, loving, happiness.  I recall feeling as though I was witnessing something precious [something that few married couples achieve].  

I will also confide in you something I witnessed sitting in the waiting area one day at Eastwind. You had a very dear moment standing in the hallway in front of an open office door. No one else was present.

There was this sweet moment in which you both kissed gently and hugged briefly with the sun streaming in that window behind you. I have not told anyone because I felt I had accidentally invaded and witnessed a private moment.  That image has never left me and makes me happy to have seen such deep love.

I am living and Michael is dying. It’s the simple and profound truth that we face every day. Of course I’m dying too, but that kind of thought goes nowhere and doesn’t really touch the living reality of our time together.

I can see the dying in his bruised face, his swollen legs, his atrophied muscles, his increasing lethargy. Since we are at the ocean for awhile, we are together all day, so there’s literally no escape from these truths. This means that every day we must face grief yet again. Another fresh dose of sorrow awaits us each morning with its pale insistent face, and whether it is acknowledged then or not, it is sitting there waiting to be seen – the sad, persistent, and inevitable guest in our relationship.

When I awaken there is always a brief time in which the pain isn’t there yet, it hasn’t been realized yet, and I’m simply myself, waking up. It’s such a relief, this brief time of waking, but it is short and soon reality sinks in again.

What I realize is that it’s absolutely necessary to acknowledge this suffering every single day. How I wish I didn’t have to! But I’ve noticed that if I try to ignore it, it doesn’t go away. Rather, it turns into some sort of ugliness or falseness, something unreal.

This means we are truly living with dying. And because of this, I’m seeing that Michael and I are on completely different trajectories – his gradually declining into greater and greater helplessness while mine is working mightily toward greater living. It is hard for me to maintain this within an atmosphere of death and I have to concentrate to keep myself from falling into an exhausted depression, or worse, an angry resentment. It is a daily practice, sometimes a moment to moment practice, of striving toward life and love and liberation. Meanwhile he moves inexorably toward the dual-faced liberation and resignation of dying.

I find myself wishing for his death more often these days. Not out of anger, though anger still sneaks in from time to time, but now the wish is riding in on waves of exhaustion. I’m truly sick of this situation. Sick and tired. But I also know that this time is sacred and that it is teaching me more about love than I ever knew was possible. I keep wondering how much more there is to learn, and then I know that the learning is infinite.

I don’t want to get sick in order to express these feelings. But they are very strong and they need to find words to fulfill them lest they turn into anger or disgust or some kind of distancing diversion. Then I realize that this, too, is love, that this striving toward expression forces me to stay honest, to speak what needs to be spoken, especially when it is hard to speak.

Love is so different from what we think it is, so different from what we’ve read or seen or been told. It’s the daily emergence of all that arises in you and your loved one, and then finding the most compassionate and most truthful way to respond. It’s the encounter with the Beloved, with the deep raw heart of God.

Today I find that Michael is crying and when I speak to him, I am crying too. He says, “I know you will feel relief when I die, and I don’t blame you.” It’s the first time he’s said this and it is such a hard truth but I acknowledge it.

“Yes,” I say, “there will be relief. And there will also be horrible, desperate loss.”

“But you will be free!” he says.

“And so will you,” I say. Now we both hear the truths we are speaking and we cry together. It is the kind of crying that brings real comfort for we have touched each others’ hearts. Now that we have grieved, and only because we have grieved, this day can move forward within feelings of gentleness and peace.

Since neither of us is denying Michael’s death, things are easier in some ways, and more stark. I’m feeling other dimensions of this experience, and the confrontation with the huge abyss of loss allows fear to arise. For a moment, I fear his death, I fear being alone, and more than that, I fear being without him in my life. I’m not sure who I’ll be on my own. I’m not sure that I will be strong, or that I will move through the world and its deep suffering with any kind of grace or calm.

Now I go to the sea for renewal. I find my emotional self stumbling when I’m alone. I stumble and wobble and cry and I wonder how I will face another month or two months or twelve months of this living death. But as I walk, I know I will. And what then? What when he is truly gone?

Far away, I see his familiar figure approaching me on the beach. I’ve been out for an hour and now he makes his slow progress in my direction. But it’s still his very particular silhouette even though it is bent and slow, it is still Michael coming toward me on the beach. How many times have I seen this? How many times has my heart gladdened to see him coming closer until we finally meet? We kiss, more a peck than a kiss, but still, it’s contact. I know there will be a time when this man will no longer come toward me on the beach, and when I say this to him, I find that he is crying along with me, and my heart breaks open once again.

Our friend was so right. She saw these sweet moments, this huge blessing of a life lived with deep love. We meet and once again we are washed clean by an ocean of tears and grief — freed in this wild, beautiful, endless water.

Anger and Bliss

 

01/21/2018

Last week we received Michael’s new numbers from the hospital, the numbers that speak to us of progress or lack of progress with his disease. The numbers still aren’t good.

As I take in this new information the usual feelings overwhelm me. I seem to have to work through the same cacophony every time: shock, frustration, resignation, sorrow, and finally, acceptance. But this week is different. This week I feel anger sneaking its snarly little head into the mix, stuck in the crevice between resignation and sorrow. And though anger has been here before, this is an onslaught and it stays with me for several days.

Along with Michael’s quality of life, my life quality has also diminished considerably and I begin to justify my angry stance. “I’m sick of this life we have. I feel like a prisoner. How much longer is this going to go on? What’s he hanging on to? Why can’t he let go? Why can’t he die?” ‘Prisoner’ and ‘die’ are the words that stand out to me and I hear how angry and resentful I am. These are true feelings, but these are not the beautiful feelings. This is how ugly it can get inside a human mind.

After a few days I find my better self and I speak gently with Michael about my anger. In turn, he shares his own version of the darkness, “It’s not fair that I got this illness! It’s taking everything from me. My life has been destroyed. I can’t whistle, I can’t walk the way I used to, my ability to pursue my life has been taken away. My hands are clumsy and eating is a problem. Why don’t I just die? It would be better for everyone if I just died.”

As he speaks I realize that these stories of victimization are understandable and normal. But they are not pretty, and certainly not the way either one of us wants to feel. It is the mind’s way of coping with events that are just too hard and too brutal to grasp and our minds make up all kinds of stories to explain the pain we are in. It takes real effort to witness this mind game and to realize that it doesn’t need to be believed. We are not our thoughts!

To work through the anger and the stories, I have to muster the courage and humility to speak it to Michael. Thankfully, he can hear me. We are good partners, and I am grateful for the gentle ways in which we are treating each other. I’m not saying we haven’t always been kind and respectful, because we have. But it is deeper now because there’s more at stake. We both know this and we both work at this.

As soon as I hear the story I’m telling myself, and once I say it out loud, I realize again that I’m not a victim here. I’m exactly where I should be, and exactly where I’m supposed to be. For what good does it do to believe otherwise?

For instance, if I’m not exactly where I’m supposed to be, then where am I? Where I’m not supposed to be? How can that even be possible? If I’m here, then I’m supposed to be here. It’s just a rule of reality.

Of course that doesn’t mean that I don’t strive toward the Good, strive toward growth and something better, for that striving is infinite and ongoing. But to recognize the Good, it feels to me that first we need to recognize exactly where we are so that we can know in which direction to point ourselves.

At a spiritual level, to find the Good, the only way I can make sense of it is to recognize that every element of reality, in any situation, is here for my potential growth. And I mean every bit of it – including the mean thoughts and feelings I have about my sick husband. If I don’t admit to these feelings, they grow and fester in the dark.

Every moment of this experience is here to show us to ourselves — all the pettiness and compassion and sorrow and love. And maybe the really hard stuff is the most important because not only are the consequences so dire, but the potential for growth is so high! For this is the suffering that most captures our attention.

The great psychologist, Jordan Peterson, talks about the symbolism of the Cross and the Labyrinth. In both of these symbols we travel from the outside toward the center. Peterson says that to understand these symbols, we have to realize that the transformation of each of us takes place at the center, where the suffering is the most intense. In other words, the greater the suffering, the greater the potential for transformation. I see that through this suffering comes the possibility to awaken wisdom and a kind of grace.

The truly remarkable thing to me is that neither one of us has actually “lost it.” Neither one of us has freaked out to the point of losing our integrity or our center. We are not filled with suffering. We recognize it, but it doesn’t own us, and it feels like it’s all just a matter of perspective. We can talk about our anger, a potentially dangerous topic, and we can do it with calm and decency and respect.

The further into the chaos and pain of illness we dive, and the more suffering we endure, the more the potential for transformation shows itself. I see that my anger is an expression of my fear and pain and I can recognize it for what it is — potential for huge growth!

Now, able to be at my best, I forgive myself for my anger. As I do, I see this time as allowing me more clarity than I have ever had, and I literally feel awash in love for myself and others. Similarly, a few nights ago, Michael spent the entire evening in bliss — the entire evening! Both of these experiences feel like a complete miracle to me.

It really is only a matter of perspective, and this level of perspective can be taken by any of us. When we find ourselves suffering, we can dare to face into it, we can dare to know that we are exactly where we are supposed to be, we can dare to be truthful and open. It simply involves taking responsibility for where we find ourselves and for telling the truth. It really is as clear as this.

At this point, Michael knows how I feel, and I know how Michael feels. We know each other’s myriad thoughts and feelings around death and dying. I sense that now anger may be more a part of the mix than it used to be. But even if it is, now I know its face and I’ve heard its speech. It will catch my attention sooner if it comes again. And if it comes,  I know everything is on the table between us, and I can continue to speak what needs to be spoken. What a relief! I have never had the opportunity to be this honest and free before, and I think Michael feels the same.

So weirdly, though grief is in the background of every day, this isn’t just some difficult time in our lives. It is also a time when waves of joy dance within us, when things are more important, when truth is paramount, and when consciousness allows us to rise above these horrors and see them for the human comedy that they truly are.  It is a time for loving each other in a deeper, different way.

For any of us, learning how to be with our suffering is one of the greatest gifts of any crisis. In it, there is real potential for deep recognition of the patterns that have bound us. Today I see that Michael and I are receiving a tremendous opportunity. I realize we are moving more consciously into our suffering and into our hearts. I feel us standing together, witnessing in awe, the huge blessings and mysteries that unfold around death.