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.

Thin Ice

We are completely shocked, completely taken aback. We had no idea that the ice we are skating on is quite this thin.

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December 21, 2017

We meet with our wonderful nurse practitioner once again and after 17 months of treatment she tells us that Michael’s light chain numbers, though slightly lower, are still not in the normal range. She tells us that if they hadn’t gone down, the medical team would have recommended a “salvage transplant.” We are completely shocked, completely taken aback. We had no idea that the ice we are skating on is quite this thin.

What a phrase! A Salvage Transplant. It sounds so industrial, so vehicular. And I guess to some extent the language is actually representing the spiritual understanding. It literally would be a stem cell transplant to salvage the vehicle of the body, the vehicle of the soul. But it sounds harsh and desperate.

We come home in shock and upset. I’m trying to get my head around what another stem cell transplant would be like now that these transplants are done as outpatient procedures. This literally means that Michael would be taken to death’s door once again and that I would be the person at home taking care of him. Michael is remembering that it took him almost a year to truly recover from his first transplant. It’s overwhelming and I am terrified.

All I remember from the last transplant is that it was a time in hell. The idea of going through diapers, and walkers, and sponge baths, and Michael’s horrifying loss of function once again, is utterly frightening. We would have to get help because I truly couldn’t do it alone.

Michael’s white blood count would be taken down to zero and he would be near death, unable to eat, drinking only minimal amounts of water, moaning and sleeping most of the time.

I would be on call 24-hours a day trying to get him to sip water or broth, keeping him warm, monitoring his intake and output, taking his blood pressure and temperature, and keeping him clean and bathed. I would have to quit my work, hire nurses, and get help with all kinds of tasks that I’m simply not strong enough to do. Just getting Michael in and out of the few steps to our house, wheelchair bound, for our daily trips to the hospital, would require more than I can do. If I dropped him, or if he fell, I simply couldn’t pick him up.

I’m realizing that this salvage transplant idea has scared me to the point of complete ungroundedness until today. Once I meditate and accept my feelings of fear and terrible sorrow, I can move on. Finally energy comes flooding through me from crown to feet. It is the energy of this holy day, this Solstice.

This energy allows me to realize we have reached the beginning of the end – or at least the beginning of the end of Michael’s formal medical treatment. I finally say these words to myself today: The beginning of the end. There may be a long middle section, I don’t know, but it’s clear that we have reached a new level of seriousness. And though Michael doesn’t need a salvage transplant this week, I have a strong intuition that it will be offered again in the future.

What does this mean now? We’ve both been thinking about how to live whatever life we’ve got left. It’s the question for anyone our age, and really, and it is the question for all of us all the time. How do we live a good life within whatever restrictions life has placed upon us?

This is the richest ground, this thin ice, upon which we’ve ever stood. Perhaps richness tends to happen more easily within the restricted ground of mortal illness. It compels us to look closely and pay such deep attention. Life and death are literally at stake and we are forced to live in the present moment! There seems to be little effort in this other than a commitment to see and hear what is really going on around us. What a grand and unexpected benefit this is in a crisis — present-centeredness simply happens.

Since it is the Winter Solstice, we both do tarot card readings, trying to see ahead into our murky futures. This is the reading that looks at the movements of energy within us until Spring raises her lovely green head again in March.

My reading was positive though I have to realize that I am blocking my “initiation into the secret doctrine” (The Hierophant) with my sense of being imprisoned by circumstances (8 Swords). In the four cards that represent the self’s pillar, I receive the Sun, 3 of Pentacles, the Devil, and the High Priestess as the outcome.

The message seems clear to me. My heart (the Sun) is shining brightly and my environment is colored by “perfected work.” But then the Devil appears warning against delusion, illusion, and the power of the mind to distort reality. Finally, the High Priestess emerges as the outcome. On the Tree of Life she is the guardian and the guide to the central channel that leads to the Highest High. Oh how I wish to be guided by her! I meditate on her blue light and find peace.

Michael’s reading is more mixed. His enlightenment is present in the Temperance card that appears in the position of the past. And there are other helpful energies along the way, but he is plagued with the same sense of imprisonment that I had (8 Swords) though his appears as the Self card, which seems fitting. The Tower is also in the self pillar indicating some kind of lightning strike, the hand of God reaching out and upending the status quo. His outcome is the 9 of Swords – sleepless nights. We literally laugh out loud as this card is turned. As a natural outgrowth of this process, we’ve had many sleepless nights, and it looks as if these will continue.

Today Michael says, “I probably won’t go through with another transplant. There’s literally no research to support it.” He explains that there is some support for using this second transplant in a related disease but it’s only anecdotal evidence and it’s for people who’ve already had a remission. Michael has never had a remission. All in all, the costs outweigh the benefits. Suddenly I find my first deep breath in days realizing that I’d had no idea how long I’d been holding my breath.

I’m so relieved by Michael’s statement, by his strength, by his good sense, by his willingness to face into whatever comes with courage and truth.

I write to our nurse practitioner about our concerns and she tells me that an outpatient transplant is “optional” and we could still do it as an inpatient procedure. Though neither of us heard this at the time of our appointment, it softens me and I realize we could make it through such a thing again. I tell Michael this and he says, “There’s still no data to support it.” And he’s right.

So, now, for whatever reason, as Winter dawns we are being drawn more deeply into ourselves. It seems very natural. We have arrived on this rich spiritual path to explore what it means to truly live our lives, knowing they can be overturned at any moment.

The ice is thin here, almost like glass, and I see through it into the depths of the water below. It can break at any moment and we can drown. But for now we are learning to skate this slippery path, learning to balance in the cold bracing air, giving ourselves freely to the heartbreak and joy that it means to be fully alive.

Growing Up

Often we are rewarded in this society for giving ourselves up for others. And though this is the partial essence of loving thy neighbor as thyself, it can also turn into a terrible and twisted version of martyrdom.

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“When we tell the truth, we create goodness.” – Jordan Peterson

Lately I’m realizing that Michael’s illness has pushed both of us in ways we would never have otherwise been pushed. Both of us are in some way, finally growing up, finally being the adults we were always meant to be.

In the past week we are both taking care of ourselves pretty well. Michael’s blood sugar coming under control has really helped the situation. He’d been feeling really low, physically exhausted, and his mental attitude had started to decline. He was talking more about dying, and I was thinking about him dying more often.

Once we found out that his chemo drugs had made him diabetic, things started to improve. He’s taking blood sugar medication and watching his diet and he’s feeling much better. Regardless, it was certainly a lesson in how things could be, how the decline into death might take place. Since he is better I can write about it again. At the time, I truly didn’t have the words.

Now that life is more stable, it’s made me think again about Ken Wilber’s recipe for true adulthood. He exhorts us to do four things: Grow Up, Clean Up, Wake Up, and Show Up. It’s a terrific shorthand for a way to think about one’s own level of maturity.

Growing Up is about becoming someone who takes responsibility, who can be counted on, who tells the truth, and who honors their word. It’s simple to write these words, but this is a huge leap in consciousness! It requires the discipline of pointing one’s self toward the good, over and over again. It requires telling the truth as best we can. When we lie to ourselves or others, it makes us weak. And I mean that literally — it makes us fall out of alignment and it weakens our spirits.

To Wake Up is the act of realizing the true nature of one’s essential being. These easy words belie the mountain of thoughts and efforts that lead to this state, but both Michael and I have awakened to some extent. I can feel my own need to continue to grow and stabilize my level of awareness, and Michael is doing the same. Regardless, we are on the path of awakening and we know it.

Showing Up is simple really – it’s the recognition of what is needed by the world and taking the action to do whatever one can to fulfill it. What is needed is usually whatever is right in front of us. It is what is showing up in the present moment that needs our clear attention, and then doing what the world is asking of us in that moment. This can be simple or complicated but it is always about taking an action that leads toward the greater good.

But Cleaning Up – oh my – it’s a long and arduous process of encountering the Shadow parts of ourselves. It is also infinite because the dark unprocessed parts of ourselves are always opening beneath us, beneath our consciousness, always becoming. They show themselves in the dreams, the trances, the unformed chaos beneath our psyches. The great psychologist Carl Jung believed that these shadow parts are the literal key to our vitality and life force, and they are usually deeply hidden from us.

The Shadow is made up of all the parts of us we don’t want to see – the anger, the resentments, the judgments, the fears – all of this never goes away!  And though the Shadow also holds immense creative powers, these are hidden in the depths of our psyches until we have the courage to face into the darkness we are blocking. We can’t escape our Shadows! We can’t “make” them go away. And the more we try, the larger they become.

For what heals the Shadow, what “cleans” it, isn’t an effort to make it go away. Rather it is the willing acceptance and integration of our darkest impulses, our humanness, and our flaws. In other words, we work toward the loving acceptance of who we are in all of our tragedy, our selfishness, our vulnerability, and our fear.

I find that each of us, in our own way is working on these four dimensions of true adulthood. But it’s the Shadow, always the Shadow, the keeps me up at night.

Lately I’ve been seeing our cultural Shadow in the stories of caregiving that I hear around me and I’ve been noticing that the line between the martyr and the saint is a huge ongoing question for me.

Often we are rewarded in this society for giving ourselves up for others. And though this is the partial essence of loving thy neighbor as thyself, it can also turn into a terrible and twisted version of martyrdom. For the saint is walking a path that sacrifices the self in the name of a higher calling while the martyr may be walking the exact same path but at the cost of their own life force and their very soul.

I’ve been hearing about people who have completely put their lives on hold for their sick partner for years and years at a time. These people are held up as examples of how to be a good caregiver in spite of the fact that their own sacred life has been stymied and reduced. I hear these stories and I find my shadowy anger rising within me. “My life is important too!” it shouts at me.

I’ve also heard the stories of those who leave their ailing partner because they can’t deal with the suffering, and these stories are held up as morality lessons, a lesson in how not to be. My Shadow insinuates itself here with visions of escape and fantasies of life alone which immediately leads to feelings of guilt and shame.

Occasionally there are stories of caregivers who have somehow managed to find the middle path – to care for their loved one and to care for themselves but these stories aren’t as common or as vivid. It is the extremes of the caregiving stories that we hear most often. This is the hardest wrestling match, this middle path. It is the one that demands my firm commitment to goodness toward myself and toward Michael, even when this goodness may lead in opposite directions.

Regardless, these stories raise many questions: Have I been kind enough to my husband? Have I been kind enough to myself? Do I need to speak more truth to him? Speak less? Do more? Surely not. Surely? Could I be more loving toward him? Toward myself?

These are not easy questions and there’s no single right answer. In any relationship, whether in sickness or in health, these questions arise — questions of how much to give to another and how much to give to one’s self. Questions of loyalty and care, and just as much, questions of obligation and responsibility.

I’m in a mighty wrestling match with these questions right now, and though I continue to be grown up, continue to show up, and continue to try to find the highest good, the Shadow arises taking me into my most difficult questions about myself and my motives. I’m finding that obligation, loyalty, and self-love often define a very narrow line to walk — the proverbial razor’s edge.

In an effort to quell the Shadow, I tell Michael that I’m trying something new. Today I say that I will assume he is fine unless he tells me differently. He is relieved when I say this. “Well, great!” he says. “It’s about time.” He has witnessed my worry and what he must see as over-protection and he’s glad that I’m giving him more space.

Then I add, “I mean that at every level – physical, emotional, mental, and spiritual. I expect that you will tell me if something is wrong. Otherwise I will assume that everything is ok.” Again he agrees and he seems to understand.

Somehow I feel a new sense of freedom in this! I won’t be mentally chasing Michael to find out how he is. I won’t be constantly wondering and worrying over his situation, or at least I hope I won’t. He will simply tell me. And if this is true, it will be a different way for us to relate to this illness of his – two independent adults, awake and caring companions, openly sharing their very different journeys with honesty and love.

The Labyrinth

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6/29/17

I go to a retreat center for much needed relief. I’m in a hermitage, the small solar-powered straw bale houses set off on a quiet place on the property. I’m immediately struck by the fact that I have chosen to hermit myself away from the hermitage of illness that’s been created by Michael in our home. I am completely burned out.

After I unpack I go to the labyrinth which is close by and for the first time ever, I am blessedly, unrestrainedly, alone. What a gift! As soon as I enter, I begin to weep. Just soft tears, realizing how sad I truly am, as I walk so slowly through this journey of the soul. I ask over and over to know my spiritual path. “Show me my path, show me my path.”

As the twists and turns unfold I am taken into the Eastern quadrant and there I begin to sob, to cry my heart out, alone in these woods, alone on this path. I am desolate with sorrow and loneliness. There’s no other word for it. Desolate. I realize I’m not prepared for how lonely the caregiver in me has become. Once I move into the South I begin to calm and other thoughts enter my mind – thoughts of the mystery of Spirit, thoughts about being taught this deep hard-edged lesson, thoughts about my astrological north node which has always cautioned me that my learning must be about independence.

Then I am in the West. I notice the animal tracks that I’m sharing this path with – deer, rabbits, chipmunks, birds. I notice the small branches that cross the path and instead of removing them I recognize them for what they are – the things which cross the path, the things that mark a brief stop or a need to step over or go around. I move even more slowly now. As I enter the North it becomes a place of recovery, a place for rest in which I am more sure-footed. But as I enter the East again, I am besieged by grief – overwhelming, heart-stopping grief. And again, it begins to abate in the South. I am curious but still crying.

I honor all the sacred directions and the powers they represent. The East – the realm of Air and Thought. The South – the realm of Fire and Spirit. The West – the realm of Water and Emotion, and the North – the realm of Earth and Groundedness. But I am drawn to stop in the West.

In the West, the King of Cups comes to me. I had drawn his card as the outcome for my summer solstice tarot card reading and had been wondering what the lesson is. He is “the fire of water” and his picture is one of a King sitting on a throne that is riding on top of the water. He is not taken under the water, into his emotions, in any way. He recognizes them, feels them, but does not dwell on them. And he holds the paradox of fire and water – Spirit and Emotion – a paradox that is held in balance as he sits on top of his feelings rather than being overwhelmed by them.

By the time I finally reach the Center, it all comes tumbling in. All the disparate parts of the self, all clamoring for attention, for simple recognition. I cry more deeply and then finally, I am calm. I sit for some time and leave the labyrinth without retracing my steps, knowing this is not the holy way, and not caring at the moment, just needing to be moving on, just needing to understand the lessons of the labyrinth.

I realize I have been dwelling in my sad emotions of late. It’s hard not to. There are times when I look at Michael sitting on the couch and I can barely stop myself from crying. His life has become so much smaller – days of reading, writing, meditating, computer surfing, and various distractions of food and TV. He even looks smaller. He’s curved inwardly and his spine is rounded and knobby. His arms are thin and he’s losing strength and grace.

Somehow the lessons of Water and Fire come pouring through me now – “Feel it all,” they say, “feel everything, and then turn it over to Spirit! Let yourself burn in the purifying fire. Let yourself be taken up to heaven and released.”

Outside the labyrinth there is a path called the Cosmic Walk and I decide to take it. There are markers all along the way starting with the appearance of modern humans, then prehistoric peoples, then mammals, then lizards, then sea life, then plant life, then bacteria. All of this occurs within a relatively brief span of the walk and there’s a great walking distance between this and the creation of the earth and the solar system – billions of years. Finally, many billion years later, and many more steps along the path, is the creation of the Milky Way and then all the way out to the Big Bang, or as the walk says, “The Great Flaring Forth.” I love this – the Great Flaring Forth. It reminds me of the Dazzling Dark on the Tree of Life. We are so small in our little lives, our little deaths. I emerge from the walk feeling cleansed and renewed.

I go into the retreat center’s meditation room. Again I am blessed with solitude in this soft silent space. When I emerge I see a prayer book for those who come here, a book to petition God for intercession into our heartsick lives. As I look through it, page after page contains the words, “Prayers for my dear husband….” I catch my breath realizing that countless others have come to this exact place before me with these exact words: prayers for my dear husband. It breaks my heart wide open and I cannot write these words for Michael. Not yet.

I walk the labyrinth alone again the next morning. So slowly. I wonder if I will once again encounter the deep grief of my thoughts in the East. But, remarkably, I don’t. There is a sinking, a swamp to be avoided, but I can walk through it without tears today. Then, unexpectedly, I break down in the West, the place of emotion and realize that maybe this is exactly the right place to break down. Today when I reach the Center, it is very peaceful — steady and calm and full. I walk out in the sacred way this time, unwinding my path from the Center to the beginning, to the end, and feeling the wholeness of this journey.

I go back to the meditation room now, then back to the prayer book. I write: “Prayers for my dear husband, Michael.”

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.

Half Life

“I’m tired of living this half-life!” I blurt this out while washing dishes a few days ago. As soon as I say it, I’m both glad and a little surprised.

October 7, 2017

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“I’m tired of living this half-life!” I blurt this out while washing dishes a few days ago. As soon as I say it, I’m both glad and a little surprised. It’s been stuck inside of me for weeks, and now I finally say what is in my heart. I’d been holding back, not wanting to hurt Michael, but now my own pain guides me forward. He takes this in without arguing or resistance. He skips a beat and then says, “Well, what would make it 55%? I mean, we’re at 50% now, so what would make it 55?” So here is the man I love – the ever practical and grounded Taurus, asking how we can take this impossible situation and make it better.

For this situation is impossible. Michael is on chemotherapy for a rare and ultimately fatal disease, and he’s on it for at least another year. And now I have to skip a beat. But the truth is, there’s really nothing that either one of us can do to change these numbers. It is a half-life! We can’t do most of the things we used to do. The only time that we go “out” together is when we go to the hospital. The rest of the time we sit around a lot – on the couch in the living room, downstairs watching TV, or lying in bed together for a brief time before Michael goes into what has become “his bedroom” to sleep.

And, no, we don’t sleep together any longer. It’s just another in the long line of losses we’ve had to endure. Michael’s drugs have made it hard for him to sleep and he will be up for many hours doing all kinds of things to pass the time. There are nights when he pees often and copiously. There are nights when he stays up reading until midnight or later. There are nights when he’s just plain restless. I found that when we tried to continue to sleep together, I didn’t sleep. And I mean, not much at all.

I realize that this is one of our patterns at work: We’re both really sensitive but in different ways and my tendency is to disregard my own feelings in order to take care of him. But I have to tell the truth and I’m finding that I’m very sensitive to what I describe as his “toxicity.” He hates that I call him “toxic” but I can actually feel it. I feel it oozing off of him after his chemo days and for several days afterwards. And there’s an underlying toxicity that just never goes away. He’s not well. He doesn’t look well or sound well or act well. Though his attitude is still positive most of the time, his body is sick.

He objected to my calling him “sick” last week and I said, “But that’s what you are!” He thought about it and decided he is “ill,” not sick. So, ok, he’s ill. Regardless, I feel it profoundly and there doesn’t seem to be a way for me not to feel it. And what it means for me is that I really need to protect my energy, especially at night when I’m trying to sleep.

For Michael’s lack of sleep profoundly affects my own. I put off separating our beds as long as I could and then I realized that though it might hurt him, it is also an act of self-preservation. This is actually a huge realization. It requires me to put my own needs before his – a very difficult pattern for me to break for it engenders guilt. But now I know that through this long process my job is to take care of myself as well as to take care of him. It felt selfish at the time and it still feels selfish occasionally, but I know it is the right thing, the only thing that will allow me to rest. And I desperately need to rest.

I look to symbols to explain my life to me, and one of the ways I understand these symbols is through the use of tarot cards. In both of my last tarot readings, Michael showed up as the 10 of Wands card. It’s a picture of the back of a man carrying ten heavy wands over his shoulder, clearly suffering under the burden of this. In fact, “burden” is the generally accepted meaning for this card. In the summer reading, the burden was in the position of my environment. In this newest reading, the burden was underneath me, below me, always there. When I first saw this card appear, my thought was, “ah, this is Michael,” and he saw it too.

But it is also me. It is a symbol of my taking on a responsibility, and being burdened by it, by the inevitable lack of sleep in this new reality of ours. Burdened by Michael’s illness, by the huge and unrelenting changes in our daily lives, by the extra work and worry that being a caregiver entails.

A friend of mine recently quoted Ken Wilber to me. He is a philosopher whose wife died after five years of cancer treatment. In his book about this time he tells of a woman who had both a terminal illness and was also a caregiver. She told Ken that, “I would have to say that it so much harder to be a support person.  As the person with cancer I had many moments of sheer beauty and clarity and grace and reordering of priorities in life, a new appreciation of the beauty of life.  But as a support person that’s really hard to find.  It was really hard for me to hang in there all the time, to choose to be there, to not feel I was walking on eggshells all the time around the person.  It’s an emotional roller coaster for the support person, and I could only come back to the one thing that really matters: love, just love him/her.”

I’m not saying this to evoke pity. In spite of a strong and easy pull toward feeling victimized, I believe that this is my spiritual practice right now, and that as much as Michael, I have chosen this caregiver path for the growth of my soul. But the words of this unknown woman allow me to fully realize what this change in our life circumstances has done to me as well as to Michael. It has changed virtually everything and I often feel that we are living a “half life.”

And as hard as all of this is, I’ve also been struck by how ordinary it all is. Caregiving, dying and death are so ordinary. It’s not that it shouldn’t be honored, for honoring it is paramount to living this life fully. But people die all the time! Some die of illness, some of accident, some of old age. But it happens all the time, and it is happening to each of us.

Birth and death are really the most true events in this life. And birth and death are so sacred because they show us the place we all come from and the place we all are going. We witness these passages from and to the Mystery with bated breath, with breaths held in wonder and awe. For we know we are witnessing something that is so beyond us that all we can really do is go down on our knees in gratitude –gratitude for the tiny immensities shown to us in each coming and going. And then we come back to love. Just love.