Coming to Terms

He has realized he is dying and he is telling people this. I am so relieved for there’s a whole layer of resistance and denial that no longer needs to exist, a whole layer of energy that no longer needs to be expended in the name of hope.

Screen Shot 2018-02-11 at 7.05.33 PM

Feb 11, 2018

In the past three days our trip to the ocean has worked its magic on us once again. Michael calls this place a “pattern accelerator,” and it’s true, for he has realized he is dying and he is telling people this. So now we have moved into another round of grief and acceptance and yet again, more grief.  I am so relieved for there’s a whole layer of resistance and denial that no longer needs to exist, a whole layer of energy that no longer needs to be expended in the name of hope.

For many months, I’ve known this was coming. At some level I knew it at the beginning. Michael says that I’ve felt this because of my father’s death when I was 13. Early on he believed that my unwillingness to jump wholeheartedly onto the Hope Train was an effect of this childhood trauma. And though there’s some truth in this, truth that there is childhood pain that is so deep it’s almost impossible to heal, there’s always been the sense for me that this disease he’s gotten is the harbinger of the end of his life.

So for such a long time, I have danced around his denial and his hope. I wanted to support the hope but without supporting a kind of wishing that didn’t feel real to me. Each month we’ve gone into the next round of blood tests, each month watching and waiting for the numbers that would tell us whether things were getting better. And each month I’d feel us clinging just a bit, wanting the numbers to be something that they aren’t, then watching as that same energy got redirected into the next month’s numbers.

Now we’re not expecting the numbers to become normal. Now we’re expecting that Michael is moving toward some kind of death at some unknown time. But knowing this is coming, and really knowing this is coming, are two different things, two different layers of acceptance and meaning.

For several years my left eye has been dryer than the right and it tears more often and more easily. In the past year this has gotten noticeably worse. As a mind-body psychologist, I pay attention to these bodily metaphors, my own and others’. I know these metaphors are always telling us something about ourselves, and usually something important, something that we haven’t totally grasped or haven’t totally healed.

In metaphorical language, the left side of the body represents the Feminine, the right side the Masculine. It’s a pretty easy metaphor really. My feminine self is crying while my masculine self is seeing clearly and I realize that both are important and both are true — for there is real grief and there is clear seeing.

Today I went to a place on the beach that we call The Point. It’s a good long hike and Michael drops me off near an entry point and will pick me up later so that he can have the car. He is too tired for this walk and he is sad not to be able to take it with me. I pack a bunch of tissues assuming I will be crying on this beautiful and solitary stretch of sand. It’s the first time I’ve gone here alone.

Before it was always Michael and me – walking, holding hands, watching the waves and the thousands of different birds that make this part of the world their home – the pelicans, seagulls, plovers, terns, herons, and skimmers. It’s a special place for us and it’s bittersweet to be doing it alone. But it’s still transcendently beautiful and the sacredness of the place overtakes me. I meditate and do yoga and pray and sing songs of worship to the ocean. For a time, I am healed and surprisingly, I don’t cry.

As I walk the long path back to the road where I hope that Michael will meet me I realize that I’m going to be doing a lot of things alone — things that I used to do with him. My left eye tears up over this but my right eye remains clear. “Oh well,” I think, “It’s just the way it is. Accept it, accept it.” I know I am sad but I also know I am deeply blessed to be walking on this beach, to be praying in this sacred water, to be loving this holy place.

But I’ve walked a long way and now I’m tired. I’ve been out for almost 3 hours and my legs are hurting, the wind is picking up, and there’s rain blowing in. Finally, I make it to a long boardwalk leading to a place we’ve stayed before. It’s closer than the boardwalk to our current house which is another mile down the road and I’m ready to come in. I text him to tell him where I am, but since the phone service is terrible here, I can’t trust that our texts will reach each other. I’m not sure if he’ll be able to find me.

My feet are crusted with sand and they hurt from walking on seashells and the hard, cheap and splinter-laden wood of this boardwalk. I sit down to stretch my socks on over my filthy toes, engrossed in my struggle with gritty sand, tight socks and old shoes. Across the way, on a parallel walk, a man calls out, “Is that you?”

I look up and it is Michael! “You found me!” I say joyously. And as my heart leaps with joy, just as suddenly I am besieged by sorrow. I realize that someday Michael won’t be here to find me, and I wonder if anyone will ever look for me in this way again. Now deep wracking sobs move through me with a grief that is almost unbearable. But all of me is crying now, and that is a good thing. There’s no distance from this grief, no escape from this pain, for he will be gone and I will be here without him. And now at last, I can fully face into this.

The good thing, the truly remarkable thing, is that for the first time we can talk about it. We can grieve wholeheartedly. There’s no more hiding from the truth, no temporizing, no denial. We don’t know how much time we’ve got left, but we know it’s limited.

I didn’t know I’d have to face yet another level of acceptance. I should have known, but I didn’t. I’m realizing that each new layer of acceptance must also mean a new layer of grief. For when we accept something we don’t want to accept, aren’t we really just learning to live with some sort of loss? Even though I’ve known this death was coming for some time, now that I really know it, I find myself stumbling around it, shakily trying to find my feet, trying to hold steady. I am learning over and over again to accept the unacceptable.

I remember reading a sentence about grief in one of the many medical rooms we’ve sat in throughout this 19 months of illness. It had one of those rainbow and sunshine backgrounds with the words: “Grief is just love that hasn’t let go yet.” But then I wonder how we ever truly let go of a much-loved person.

All I know for sure is that I can’t let go yet. This man is still very much alive, and though his body is dying, his soul is growing, and I am here to witness that growth. Now I embrace this new reality. Both my eyes are open and both are crying, my whole heart is bursting, and I am alive with grief and clarity.

Life Purpose

Screen Shot 2017-12-16 at 8.56.59 AM.png

November 21, 2017

The new numbers just came back. The numbers that indicate if Michael’s new drug, the “last” drug, is working. And at least so far, it isn’t. The numbers remain stubbornly outside of the normal range and are almost exactly what they were on the previous drug which also wasn’t working.

Of course the word from the medical community is to give it time. The hope is that there is a cumulative effect and Michael has been told to stay on this new drug for a year. Regardless, both of our minds can’t help buzzing with this news, can’t help projecting ahead into the unknown, can’t help wondering what our next step is if there’s no improvement in the several months ahead.

“Maybe I’ve completed my purpose,” Michael says this to me as we sit on the couch facing each other to talk about the future once again. “I mean, maybe my soul purpose is done.”

“Maybe,” I say, “but I don’t know.”

He says this without self-pity. It’s just a statement of fact. The things he used to do, and the things he is doing now, are drying up. They’re not quite flowing. Naturally we both take this as a sign. For one reason or another, the flow of reality is not lining up with Michael’s efforts. This is unusual for him and it catches our attention.

He says, “It seems to me it’s a message. Things aren’t working for me.”

I can tell he really is seeing this clearly. It’s not about feeling sorry for himself. He’s simply noticing the flow of events, noticing where the flow is blocked and he’s not taking it personally.

“So what do you think that means?” I ask.

“It may mean my soul purpose is completed. It may mean I’m supposed to die.”

So now the entire question of one’s soul purpose presents itself at a deeper level and it opens up a huge area of inquiry. How do we even know what our life purpose is? And if it is completed, which in itself seems almost impossible to know, does that mean it is time to die? Can it ever truly be finished? Aren’t some of the greater purposes infinite in nature? Aren’t they always somewhat of a mystery?

Michael had a clear soul purpose before this illness: he was a healer and a teacher and he has done these things. But those purposes have been taken away and it’s likely they won’t return. And everyone who retires is more or less facing this same question – what is my purpose if I’m not doing what I’ve always done? How do I share myself in a way that supports my sense of purpose, in a way that furthers the greater good? And those who are ill may face an especially difficult question: What is my purpose if I’m no longer even able to do what I would like to do?

Add to this the interesting fact that Michael’s spiritual awakening occurred just a few months prior to his diagnosis, and the question becomes even more complicated. Was his life purpose simply to wake up? And then what? Die?

I believe our life purpose is something that can be discovered but it’s far more mysterious than our careers, or our partners, or our hobbies. Some people are born knowing what their purpose is in life. But most of us aren’t that fortunate and we have to stumble around while trying to figure it out, and sometimes we never do.

In my stumbling I’m learning that we don’t move through life, life moves through us. And in that movement we encounter exactly what life wants from us whether we know it or not. Life has its own agenda! And we may, or may not, ever know what it is. In fact, it’s possible that we don’t have to accomplish any particular thing in order for our purpose to be lived. It’s not about what we do, it’s about who we are.

So who is Michael now? He is a man who is facing death with as much dignity and acceptance as he can gather. He takes in the latest medical numbers with relative calm and with a sense of surrender to the greater Mystery.

Who am I? I am the woman watching the man facing death and trying to deal with the many impossible feelings that arise as I do so, trying to face all of it with humility, love, and raw truth. Elucidating this process seems to be my purpose right now.

One thing I’ve discovered for sure is that it doesn’t matter how many mental gyrations I go through – it still hurts. Each new layer of illness is another loss, another adjustment, another tragedy, and it does no good to deny this. There is a huge amount of suffering in watching this drama unfold and there is no way around it. And, ultimately, thank god for it!

Through these events I am being given the immense gift of time. For time is letting me work through this process and is allowing me to feel more than I’ve felt in years. Time is giving my mind the space to thrive on thoughts and words that I never knew were in me. Time is allowing tremendous spiritual richness in the encounter with death and dying. And finally, even though I am deeply sad, in some profound way, time is making me grateful for sorrow.

For all of it is true! All the feelings, all the thoughts, all the ambivalence, and all the events. The revelation, over and over, is that this is the truth of life and death. This is the way it is. And even this level of suffering and loss is worth it. I’m learning that as harsh as it is, the experience of life and death is worth the suffering, for within it we have the opportunity to find our best and highest selves.

If life purpose is actually about who we are rather than what we do, it seems to me that all we can really do is take the next step, the one that is right in front of us, and take it with as much integrity, and presence, and grace as we can muster. Each step leads to another, and with each step we learn to trust the process of simply Being more and more deeply. And even though sometimes a step plunges us into chaos, chaos can become our greatest teacher.

We can learn to do this dance of life with all of its missteps, gracelessness, and errors. We can learn to trust that if we fully do the dance, with every part of our being, in the end we will be led to know why we’ve come here. For ultimately, this feels like it is life’s purpose — to live  as fully and deeply as we dare.

Dance of Life and Death

Shiva

April 3, 2017

Today a woman almost died in the clinic. She was in the lab getting her blood drawn prior to receiving her chemotherapy. Apparently her blood pressure bottomed out and suddenly we hear a loud voice shouting, “We need a crash cart. Now!” All kinds of medical personnel arrive quickly and the air takes on a hurried urgency that is not usual for these generally boring days. A nurse comes out and tells us there’s been an emergency and no one will be taken into the lab for awhile.

Michael and I immediately go into meditation, sending light and love to this unknown person and her helpers. Both of us feel the patient’s soul struggling to decide whether to stay here or leave. I am aware of angels and Michael feels she’s decided to stay on earth but isn’t really happy about it – there is still some work for her to do.

In the meantime, another nurse comes out and begins talking with the only African American woman sitting alone in the waiting room, waiting like the rest of us. I realize that it is her mother or sister or friend who is in trouble. The nurse says they will be taking the patient to the ER, and then goes back into the lab to help.

I watch the room and for the most part people simply keep doing whatever it was they were doing, sort of a “business as usual” stance, though this is hardly usual. No one looks at the woman sitting with us whose life has just been upended. I’m not sure if it’s because she is Black or more likely, because they simply don’t know what to do. I cross the room to sit with her and ask if there’s anything I can do to help. She looks at me with tears in her eyes and says they will be going to the ER soon. I say, “We’re praying for you.” She takes my hand and we sit for a moment in the stillness of calamity.

Eventually, the patient is taken on a gurney to the ER. I see she has oxygen and IV’s but she is clearly unconscious, and the little drama moves on to another venue, as her friend or sister or daughter follows her down the hall.

But I am more shaken by this than I realize. As we walk up the stairs to the chemo suite I am suddenly weak and sickened, and a migraine begins its dreadful journey up the back of my neck and into my head.

This could be me, I realize, this could be Michael on that gurney. This clinic isn’t just some place we visit every week. It’s a life-threatening, life-saving place – a place of Western medical healing, and as primitive as it is, it’s what we’ve got. It’s the slim thread of hope.

We’d been beginning to talk about treatment as The Long Slog. We’ve been at this for 5 months now and we have at least 7 months left to go. This feels like a very long time some days and of course there’s no guarantee that everything will be better after all of this treatment is finished. We keep saying we’re “buying time” as if time is something that can be bought, when really we know that it’s all up to some Mystery that is far beyond our ability to control or comprehend.

Regardless, it’s all become bizarrely routine – the weekly trips to chemotherapy, the “up” time on Tuesdays after Monday’s dose of steroids; the lack of sleep; the creeping bruising, redness and tearing around Michael’s eyes; the growing fatigue; the ongoing problems with swelling of his tongue and mouth, and the list goes on. And regardless of how bad this may all sound, we’re actually weathering it with a fair amount of acceptance and calm.

Last week someone asked me how I’m doing and I found myself saying, “I’m walking through hell but I’m doing it pretty well.” And then, of course, it all broke down today and the reality of our situation came flooding through me and I was able to feel the true sadness and strain of what we are enduring.

So today was not routine. The woman going to the ER reminds us that this is anything but routine. People get really sick from these treatments and people die from these treatments. And it’s a hard road for all of us – for those who get better and for those who don’t.

But what I am realizing more and more often is that this isn’t something special or unusual or even out of the ordinary. People get sick all the time and people die from their illnesses or from some awful accident or they just keel over suddenly and without warning. This truly is the Human Condition – a phrase that continues to garner levels of meaning for me as we move through this illness together — patient and caregiver.

But as common as it may be, it isn’t routine, nor should we let it become routine. It is the dance of life and death that all of us have come here to learn. Today I realize that someday I may be the woman following the gurney down the hall. And I pray that when that day comes, I have the strength to walk with Spirit, knowing that I am exactly where I am supposed to be.

The Talk

Heart sidewalk

January 17, 2017

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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