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.

Screen Shot 2018-07-14 at 9.24.29 AM

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.

Stargazer

There is kindness, and thoughtfulness, and remembrance. And there is the love that continuously streams into this world, everywhere I look, from every direction, the love that animates all of life.

flowers

June 30, 2018

Michael has been gone for 66 days now — 66 long, lonely days. Some of them pretty good, some of them really hard. I notice that I’m still counting the days but now I can count two months as well, and oddly, this feels like some sort of milestone. His death is now months ago instead of days. I’m amazed that it’s been this long a time, and I’m amazed that it’s been this short. The death of a loved one is truly timeless. But somehow, I’ve lived through it and somehow, things are becoming slightly easier, slightly better. When people ask I say, “I am in deep grief, and I’m also just fine. And both are true.”

Lately I’ve been noticing a subtle shift in the energy of many of those around me. I’m betting that everyone who is in grief comes to this realization at some point. I’m noticing that some people, even ones I’ve known for years, no longer ask me how I’m doing with my grief. Or if they do, they want to hear the happy version, the strong version, the version that doesn’t scare them.

I can tell right away which people don’t want to hear the depths, and really, it’s probably most people, and really, it’s fine. They want to hear that I’m having a good day, that life is getting back to normal, that things are moving along. It’s been over two months and I guess that for most of the world, it’s better if I’m moving on.

I don’t blame them! God knows it’s hard to hear each other’s pain, and it can be frightening. We really don’t know what to do with pain — our own or each other’s — we get scared of it and we don’t know what to say. I mean, who wants to know that I’m still suffering the loss of my beloved companion? Who actually wants to hear about death and grief? Who wants to encompass the truth that it goes on and on?

For that matter, I wish I didn’t have to hear about it inside of myself. I wish I didn’t have to feel it. I wish I could just move on to the happy, strong version of myself all of the time instead of just part of the time. But that’s not real and there is no escape for me in this kind of happy talk.

Maybe others are uncomfortable because they have a sense of needing to fix the problem of my grief, to cheer me up, to distract me.  But I don’t need distracting. I’m learning to do that on my own. And I don’t need cheering, for I am learning to live in the moment more consciously, and there’s great joy to be found here. And finally, there is no cure for grief. It can’t be fixed because the horrible truth is, there’s no cure for life itself! Grief is inevitable in every life, and honestly, it doesn’t need fixing. It simply needs acknowledgment.

We want to believe that we have control over things, and that life won’t overwhelm us. We want to believe that we’ve developed our mental and emotional strategies so well that we are protected from the hard events. We want to believe that we know how to cope. We want to put death behind us, far away from the life we are living.

Fortunately, or unfortunately, I’m one of those people who wants to know the depths, who wants to plunge into life’s mysteries, tragedies, and subtleties. I’m one of those people who wants to know and tell the truth. Thankfully, people who are close to me still ask, and these precious ones listen and hear my honest feelings. Others do not. And as I said, I truly don’t blame them. But grief isn’t like this. It doesn’t just come to a neat and final end.

In some ways, I have moved on. I’m making plans for a yoga retreat, a meditation retreat, a trip to meet my new grandson. This is good and necessary and part of healing. But it also has a kind of hollowness to it. It rings empty inside of me, a bell with no one to hear it.

Michael always heard my bell. He always responded to my heart’s songs. And whether he understood them or not, he tried to vibrate to their frequency just as I vibrated to his. And it strikes me that for 35 years I wasn’t ever really lonely. What a blessing! I’m learning it’s a remarkable thing to be able to say — I wasn’t ever seriously lonely.

Four days ago, I lived through our first wedding anniversary without Michael. I had been doing pretty well. I’m back at work and enjoying it. Maybe being a therapist is easier now because other events have paled in comparison to my husband’s dying and death. Maybe it is because I am ready for a shift into another level of my work, and maybe it is because I am able to witness my own process with greater detachment and depth. Regardless, work has been good.

At any rate, I see clients on our anniversary and I am doing fine. I haven’t cried and I idly wonder if I might be going to make it through the day in far better shape than I had predicted. And then, I go for a walk. As I am walking, I realize that I am walking alone, and that I may walk alone now for the rest of my life. I realize that it is my anniversary and there’s no one to share it with, no one to honor it with me, no one to send me flowers. Suddenly, I am overwhelmed with loneliness and sorrow.

Where do these thoughts come from? I want to dismiss them, let them go, leave them alone, but oh, I am sad. I start to weep, just a few tears, and I start to miss my soul’s companion with such fierce yearning, such wracking pain.

I come home and really break down. As I’m crying, I think that it is good. I’m getting these feelings out. They need to be expressed and I’m glad that I can cry like this on our anniversary. Now I am sobbing, keening, raw with emotion, love, and longing. Once again, I am plunged back into realizing that Michael is really dead and that I will never see him again. It’s almost unbearable.

But then … the most beautiful bouquet of flowers arrives at my door – a huge vase of Stargazer lilies. The card says, “Thinking of you today. It’s still a day to celebrate in these difficult times. Love from the Santangelo family.”

The flowers are from Michael’s dear son and his family. Somehow, they have remembered our day, have sent me flowers. And to put a finer point on it, they are “stargazers,” for that is what Michael’s spirit left behind him when he died. He left stars behind, stars that I watch on my hard nights alone. And these flowers, these precious flowers, have made the unbearable, bearable. I am crying again, but now I am crying because there is such love in this world. There is kindness, and thoughtfulness, and remembrance. And there is the love that continuously streams into this world, everywhere I look, from every direction, the love that animates all of life.

Today I gaze at these star flowers with a bit of melancholy, a little sadness, a touch of “tristesse” as the French say. It’s a word I’ve always loved. It’s the sorrows of life, the ones we can all expect, the wry and wistful knowing that this is just how it is. It’s not bad or wrong, and it doesn’t need to be fixed. Not in any way.

So, let us celebrate even this, even death and loss. For it is this that absolutely requires our attention and our celebration. It is this that gives our lives meaning. “C’est la vie,” say the French. It is just life.

 

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.

 

IMG_4298-2

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.

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.

 

The Dim Fog of Grief

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

Screen Shot 2018-03-14 at 11.45.04 AM

April 17, 2018

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Hope

Michael’s current stem cell transplant has made him terribly ill. It’s a precarious time that is filled with the mind-numbing boredom of longterm hospitalization punctuated by moments of horror. And no matter what I hope, it doesn’t change a thing!

Screen Shot 2018-04-01 at 7.57.30 AM

April 3, 2018

“You’ve got to keep your hope alive!” These are the words from a woman I know who has asked about Michael’s transplant. I had just told her that my hope around these medical treatments just isn’t there anymore. She, too, has struggled with a sick loved one and in their case, her hope has paid off.

As I walked away from her I realized that my first reaction was guilt for not being “hopeful” enough, that I’m being a bad spouse by not jumping on the Hope Train once again. But I’ve ridden that train, and I rode it hard during the first transplant, during the first chemo, during the subsequent chemo, and on and on. It’s taken me nowhere but into hopelessness. All of which makes me begin to question the underlying assumption that hope is good, is helpful, or is even necessary.

One thing I’m realizing is that hope is always about the future! We hope for some kind of better outcome and all hope is constructed on wishes for positive change in the nebulous time that is not now. Let me repeat that, it’s not Now! And finally, I’ve learned that the only time that really exists is this present moment. This one. The one that you’re using to read these words.

For the truth is, nothing is real other than this moment. Everything else is memory about the past or fantasy about the future. Most of the time we don’t stop to question the assumption about the goodness of hope, the necessity to feel that the future will be better. But what I’ve noticed is that hope knocks me out of the present moment and into a place of wishing, and if that wishing doesn’t come true, then what? Have I not hoped well enough? Or is Michael’s own hope somehow tainted? What happens when hoping just doesn’t work?

We believe we are seeding the future with our current thoughts. And certainly, it is important to have positive expectancy for the future. Things could get pretty dire if we fail to believe that our current sacrifices aren’t creating a better future down the road. But it is also important, and really more important, to have positive expectancy for the moment in which we find ourselves. For if we do not love this moment, this very moment, we are doomed.

Michael’s current stem cell transplant has made him terribly ill. His white count has plummeted and now he has no white blood cells to protect him from infection. I watch his heart monitor as he receives a platelet transfusion — sometimes its beats are even, sometimes they jump all over the place. It’s a precarious time that is filled with the mind-numbing boredom of longterm hospitalization punctuated by moments of horror. And no matter what I hope, it doesn’t change a thing!

So is my lack of hope a problem? For the opposite of hope is certainly a kind of despair, and god knows that none of us want to sink into despair. But perhaps this is a false dichotomy. Perhaps there are unnamed options outside of hope and despair. Perhaps there is a middle ground that has nothing to do with hope.

At this point, I’m searching fiercely for that middle ground. It’s located somewhere in a sense of the immediate and the neutral, located in a radical sense of accepting everything just as it is. It is not negativity or nihilism or denial. Rather it is a firm stance toward the goodness of the moment, toward an understanding that this moment is holy, that this moment is where it’s all happening, that this moment is the only thing we’ve got! And in this moment, the meaning is made.

The last line of Emily’s poem is the most mysterious for me: “and never in extremity it asked a crumb of me.” This doesn’t feel like the hope that I’ve nurtured in myself during these long months of Michael’s illness. For my hope has asked me for many crumbs. It has asked me to tend to this thing with feathers in the face of devastating disappointment. It has asked me to  believe in a treatment that hasn’t worked, that hasn’t flown. Or maybe I just haven’t understood hope deeply enough, maybe I’ve clung to it too hard. But for me, I feel that Emily is speaking of Faith, not Hope.

I find that my faith is now anchored in believing that everything that is happening is for the Highest Good. This is a very hard faith to practice in the face of the death and destruction all of us can see around us now. It is a very hard faith to practice as one test after another comes back showing no progress in Michael’s illness. It is a very hard faith to practice as I watch my husband trying to take in some broth as his white blood count hovers at zero, and horrible diarrhea becomes the result. But it is the only faith I can muster — the faith that whether we can understand it or not, there is a force in the Universe that is always moving toward the highest evolutionary principle, toward the Highest Good.

In this Universal scheme we are less than a blink of God’s eye. Our individual lives are an experiment in evolution and ultimately, a test of our ability to love. The circumstances of this testing are more complex and manifold than any of us can ever grasp, but always we are held in love. This becomes my Faith in the underlying goodness of our lives, and in our deaths. And this faith is unshakable.

At this point, I’ve given up on hope and it feels like I’m taking a breath of sanity in an insane situation. I don’t believe in it anymore. I’ve clung to it and now I know that this is a mistake. Hope still flies through my mind many times a day, but I have learned to watch her feathery flutterings and come back to faith instead. It feels more solid and more real.

I still find myself hoping that Michael can continue to take in liquids, that he can continue to find his way through this maze of drugs and nausea and extreme exhaustion. But I also know that my hoping doesn’t change anything here, that in fact it can lead to hopelessness and loss of heart.

Instead I watch him eat the little bit that he can eat. I listen when he complains about his stomach and his gut. I respond to his moans. I touch him softly on the arm to let him know I’m here. And over and over, I let go of the future, let go of hope, and dwell in the love and faith that lies between us now in this desperate and sacred place.

 

Living with Dying

Now that we have grieved, and only because we have grieved, this day can move forward within feelings of gentleness and peace.

 

Screen Shot 2018-02-24 at 10.16.05 AM

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.