Letting Go

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

 

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

June 8, 2018

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Transplant

I know that he’s just gone deeply inside himself to find the strength needed to get through this. I also know he will become more and more silent as he gets sicker and sicker over the next long days.

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March 26, 2018

Michael’s second transplant has started. There are six bags of stem cells today, and six again tomorrow. But today I am realizing how dangerous this really is. He’s been pre-medicated with Benadryl because of the strong allergic reactions that bodies have to the medium in which the stem cells are preserved.

“Now, you know you need to tell me if you have any heart pain or chest tightness,” the nurse says again. Michael nods but now both the nurse and I are on high alert, watching carefully. Meanwhile Michael has moved into closed-eyed silence and only monosyllabic responses. I should be used to this by now, but I’m not. When he is sick I always feel like I’m being shut out. But I know that he’s just gone deeply inside himself to find the strength needed to get through this. I also know he will become more and more silent as he gets sicker and sicker over the next long days.

Then yesterday we were told that there is flu on this ward. Apparently, there have been deaths from the flu in this hospital but we don’t know if those happened on this ward or not. Regardless, I’m even more cautious now though there’s not much to do but wash my hands a dozen times a day. Mostly, I sit and watch, and today I bring my laptop.

It’s boring really. Tremendously boring and also horrifying. Two days ago he was given a poison that will almost kill him in the next two weeks, and now he’s being given the stem cells that might prolong his life. But even the stem cells have risks and the progress of their input is watched closely, the nurse standing by for the next two hours, carefully monitoring every sign of life.

Michael’s throat has started itching and though that doesn’t sound like much, the nurse immediately backs off on the rate of the stem cell drip. It’s a sign of an allergic response and they’re not taking any chances.

This is good! During the last transplant 19 months ago, I am at my youngest son’s wedding. It is a tremendously hard decision to make but the nurses assure me that Michael is in good hands and I choose to see my son marry his beautiful wife. I just can’t miss this milestone event and Michael strongly encourages me to go. He knows exactly how important it is to me to be there.

In the middle of the rehearsal dinner I get a text from Michael saying that they just placed him on oxygen. I am terrified.

I go outside and stand on a cliff above the California ocean and cry unrestrainedly. “I should be there, I should be there,” is the refrain in my mind. But I’m not. I’m 2000 miles away and I don’t know what’s going on. I get another text that he’s gotten so much fluid with the transplant that it’s become hard for him to breathe. I go back into the dinner and my other son’s wife explains it to me. She’s a nurse and she can see how upset I am. “It’s not a big deal,” she says, “people go on oxygen all the time. The fluid pressed against his lungs and made it hard for him to breathe. They’re doing the right thing. He’ll be ok.”

I am much calmer but I’m also anxious to be back home, to see my husband with my own eyes, to know he is truly ok. I’m only gone for 3 days but it feels like a lifetime. What a comedy of timing! My son’s wedding, my husband’s transplant. Could it get much more dramatic? And then I realize that of course it could. Michael could die from this.

Now as the stem cells continue to drip into his arm, I tell the nurse about his previous transplant reaction, about the use of fluid that compromised his oxygen intake. The nurse pays careful attention to what I’m saying, checks his oxygen saturation, and it seems this will not happen again.

After a few hours, it’s done. There haven’t been any really bad reactions and now Michael is sleeping. The stem cells are in and making their way to the bone marrow, to the possibility of building new life within his sick one.

But I also know what’s coming. In about a week, Michael will literally be standing at death’s door once again. His white blood cell count will go to zero. And then, if things go well, the stem cells become engrafted and take over for the stem cells that are no longer healthy. Once this happens he gradually comes back from his visit to the underworld, hopefully coming back stronger than the last time.

Transplant day is counted as day zero here on the ward. It is celebrated as a birthday and helium balloons are given out in an effort to cheer up a procedure that is anything but cheery. Really, it’s not a birth day, but it is the possibility for a rebirth. And no matter which way it goes, it’s the end of the line for us. It marks a rebirth into a new life, or into the next life. And either way, both of us are looking forward to going home.

Anger and Bliss

The transformation of each of us takes place at the center, where the suffering is the most intense.

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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.