Metaphors

If we debase life’s “accidents” by not believing in their meaning, we undermine the deeper meanings that strive to inform us. Life is far too complex for us to imagine that we can control it, or halt any of its huge underlying movements.

eclipse

August 23, 2017

I’ve been thinking about metaphors — the metaphors of Michael’s illness, the metaphors of caregiving, the metaphors of the larger world. In my way of looking at the world it is a metaphor-creating machine, always showing us the way, always showing us when we’re in alignment and when we are not, always showing us exactly what is going on if we can be still enough to comprehend it.

To understand our life, all that is required of any of us is to pay attention to what is happening in our personal and our interpersonal worlds, and to really look at how reality is arranging itself for us. Then we begin to unpack the deep messages and responsibilities it holds. Once we do this, we can see exactly where we are, and we can choose how to proceed.

A few weeks ago when my son and I cleaned our basement, a huge metaphor presented itself. Finding black mold in the trunk that was holding Michael’s mementos, and finding it only there, was a clear message. But then after the clear message comes the complex and layered unpacking of the metaphor that presents itself. God is speaking to us. The problem is that we don’t always know how to understand what is being said.

For instance, it is interesting that it is my son and I who are the ones to find the mold and who get rid of the mold. Michael’s illness prevents him from doing this kind of work right now, so we are the stand-ins. And what are we standing in? We are standing in something that it is dark and dangerous, something that was hidden in the unconscious chaos of our basement. And clearly, it is about cleaning up Michael’s representations of old memories in some way. But then the questions arise: Is Michael not involved because he had already let go of these mementos and so they were returning into the mold of the dark earth? Or is he supposed to see that the mementos are no longer necessary in some way? Or is it important for my son and I to encounter this dark mess and clean it up for him or for ourselves, to let go of something that we didn’t even know we were holding onto?

I’m still pondering the meaning of this and all I really know is that something that was hidden in the Great Below got cleaned up. Beyond that, I’m still trying to figure it out.

This past weekend Michael and I were blessed with witnessing what is perhaps the most potent metaphor of the natural world – the total eclipse. It is a sight that neither of us will ever forget as we bathed in the timeless energy of totality. The sudden stillness, the growing darkening of the sky, the weird shadows, and finally in totality, the stunning black hole surrounded by the most brilliant diamond light floating in the depths of Mystery.

It is such a beautiful metaphor – the dance of the Sun and the Moon coming together in radiant beauty and utter peace. And for a moment, the Masculine energy of the sun is “eclipsed” by the Feminine of the moon — an integration that is desperately needed in this tumult of personal and collective earthly events. It brought tears to our eyes for we knew we were seeing God in one of Its many magnificent guises.

The next day we bumped smack into another metaphor when we had our monthly meeting with the nurse practitioner at the hospital. We got the new numbers that indicate Michael’s progress, or in this case lack of progress, with his disease. Last month the misshaped protein was at its lowest level since we began this whole process a year ago, and we had dared to hope. Yesterday, the bad protein had almost doubled in number. So what’s the metaphor here?

First, protein is called the “building block of the body.” It is vital in the maintenance of body tissues and energy. Michael’s body is producing too many “misfolded” proteins and both his tissues and his energy are suffering. The building blocks aren’t working the way they are supposed to and this is happening in the marrow of his bones. In other words, at the physical level, the metaphor is that there’s a deep part of him that is trying to die. In fact, it is the deepest part of his physical being. It is the very marrow of his bones that is producing this illness and this metaphor simply cannot be avoided.

Second, and this seems to be a continuous learning, it means we can’t count on anything within the course of this illness. Of course receiving this news was a blow in many ways. I had dared to think that things were getting steadily better and obviously, this isn’t the case. There’s not a straight line in any direction.

Finally, there is an absolute necessity to let go of expectations. The truth is that it doesn’t matter what we think or what we want. And in some situations, it doesn’t even matter what our conscious intentions are. All that comforting New Age philosophy about our intentions creating reality is true to a certain extent. But when it collides with fate or karma or whatever you want to call that deeper underlying force, all the intentions in the world may not change things. There are forces at work that we simply cannot understand or control, and they have things to teach us that we’ve either forgotten or that we desperately need to learn.

All I know for sure is that it is this spiritual understanding, these metaphors, that  allow me to keep my head above water. For surely, without them, I would drown. They allow me to see that things happen for a reason, that there really are no accidents. For if we debase life’s “accidents” by not believing in their meaning, we undermine the deeper meanings that strive to inform us. Life is far too complex for us to imagine that we can control it, or halt any of its huge underlying movements.

I cry this week because I have to. I feel how pure and beautiful life is, and sometimes, how desperately sad. I feel the rawness and the grief and the utter simplicity of it all. I see the metaphors and realize that they are all telling me something about myself and about the human condition. Over and over, I surrender to this Mystery, this wisdom, knowing it is teaching me exactly what I need to learn. And always, it is teaching me about love.

I talk with my son about Michael’s results. He says, “Well, some metaphors will kill you.” He’s right of course. We’re all going to die and hopefully, we’re all going to receive the immense opportunity to face death and to receive the meaning of our metaphors. And finally, in the end, we can know that life, every bit of it, is a blessing.

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.

Hope and Poison

flower sidewalk

Feb 25, 2017

I had tea with a friend yesterday and he told me that the word “poison” was a word he had trouble with in my writing. I said, yes, it’s a hard word, a harsh word, but that I had used it consciously. The more I think about it though, the more depth I’ve encountered with it, and the consciousness I thought I had with the use of this word has been questioned and deepened.

Michael is being poisoned, and it’s a word we both use. It dissolves any sense of denial that we might have about what is happening, about the reality of this treatment he is undergoing. But as my friend said, it is also the poison that heals. And that is also the truth.

I’m not ungrateful for this treatment. Without it, Michael would be dead within the next several months. I’m also not ungrateful to the people who give us these treatments. They work hard and they are saving lives, and by and large, they are truly dedicated and caring.

But it’s such a primitive way of healing, this poison we consume. I remember going to an event at which Bill Moyers was present because he wanted to use the work for his series on healing. The presentation was about cancers and the way we heal them. The refrain of the song throughout the piece was “Cut, poison, burn!” and the woman who sang this piece performed it with anger and intensity.

It really struck me at the time, and it strikes me still. It’s all we’ve got, this cutting, poisoning, and burning our way through diseased bodies. This is the way Western medicine works right now, and we pay a high price for this healing.

Michael and I have spent most of our adult lives studying and using healing methods that are gentle and in alignment with nature. We have used alternative medicine as ancillary treatment for all kinds of illnesses, including cancer. We know of people who’ve chosen to pursue nothing but alternative treatment for cancer, and we know of several of those who have died. We also know the stories of those who have healed through diet, herbs, energy medicine, and meditation alone.

So we come to Michael’s treatment with a huge load of ambivalence. There are no alternative treatments for Amyloidosis so there doesn’t seem to be any way around our current path. But it’s hard. We believe so deeply in healing from that other realm, from the realm of energy and intention, from the realm of Spirit, that to subject ourselves to this system is difficult and disturbing.

And it does feel like a subjugation, a surrendering of ourselves, to a system that doesn’t understand us or our underlying ambivalence. How can it? It’s built around a method of treatment that gives little credence to diet or herbs or energy fields or any of the methods that we’ve seen work. It’s impersonal and lacks the individualized attention that is one of the hallmarks of alternative medicine. We are just a cog in a giant machine that at its base, cannot care for us in any other way. There are simply too many people to treat and too little time.

Now we’re starting to see the side effects of these “poisons that heal.” Michael is very tired, much more tired than he’s been before, and he can’t seem to sleep well enough to feel better. Even on the few nights when he does sleep well, it’s not enough to allay his underlying fatigue. His eyes look sick. They are red and swollen and they itch and bruise easily. His skin tears with the slightest rubbing against a harsh surface. He still can’t eat much of anything that doesn’t have a sauce around it, something to make it easy to chew and swallow.

In spite of this, Michael and I spend a fair amount of time every day meditating on health and healing. It is what we can do, what anyone can do, to help themselves heal. It brings the light of Spirit into a process that could lack that light without our conscious intentions. And it allows us to hope.

My friend reminded me of a quote from Meher Baba who exhorted his followers to “have hope,” and I found my ambivalence again. Though hope can be the perfect support for any endeavor, it can also bring an influx of desire and wanting with it. And when that kind of hope gets frustrated it leads to anger, fear, and despair.

So I’ve been careful in my hoping, and I think that is exactly what Meher Baba would have supported. As my friend writes to me today, “It is not ‘blind hope’ (like ‘blind faith’) or ‘grasping/craving hope’ that he is advocating, but a hope informed by the reality of grace and mercy.”

I do hope, we both hope, but we hope knowing that we have no control over the outcome of our hoping, that things may turn out very differently from what we hope. And knowing this, with full acceptance, we surrender to reality just as it is, over and over again, trusting that the larger plan of Spirit will bring us to exactly the place we are supposed to be.

Adjustment

Adjustment

February 13, 2017

Another Monday, another day of chemo. I’m finding myself absolutely astonished at how people adapt. Something that was initially horrifying has become routine. And though I know that the horror is still lurking just under the surface, we’ve come to accept Mondays as our “chemo day.”

There are “short chemo days” every other week, and “long chemo days” every other week. And then there are “really long chemo days” once a month. The short chemo days involve only two poisons, while the long ones involve 3 poisons that take longer because they have to be delivered sequentially in case Michael has some sort of adverse reaction to one of them. The really long days involve four poisons, and they are brutal. They last anywhere between 5-7 hours depending on how fast the pharmacy can deliver the drugs. It is agonizingly boring waiting and sitting in our cubicle while trying to entertain ourselves through what has become just another chemo day. The patient gets to sit in a comfortable reclining chair while the support person suffers in a hard-seated straight back chair. I take pillows and sit on the floor from time to time in order to get through these long days but even that is hard and uncomfortable. Still, I’m glad Michael gets a good chair. It’s bad enough for him without adding even more discomfort to these difficult days.

Today was a short day and we’ve become ridiculously grateful to leave the chemo unit in under 2 hours. And today, for the first time, Michael feels he can walk all the way from the chemo unit to the parking ramp with me. We walk slowly, very slowly for my usual gait, holding hands while I listen to him breathe heavily through his protective face mask.

But at least he can walk! In fact, we’ve made it around our block twice now in the past two days with this same slow pace while enjoying this oddly warm February weather. It’s the first time he’s walked outside in the past 5 months and it feels good for both of us to be able to do this. We even went to a movie yesterday, face mask in place, bacterial wipes in my purse, and off to the earliest 10am show in order to reduce exposure to other people. A simulation of normalcy that allows both of us to feel a bit more balanced, a bit more like the couple we used to be.

But the illusion of normalcy is inevitably interrupted by various realities. Michael’s eyes are being attacked by this illness. Sometimes there are huge dark bruises around them, sometimes they are an ugly swollen red and purple. Most of the time they itch and tears continually fall down his cheeks while his body tries to moisten eye tissue that is simply too dry. His skin is so thin that even a slight scrape becomes a bleeding leaky mess that requires layers of ointments and bandages for several weeks before it heals. Now he tires easily, has trouble eating, and of course he has lost his hair. We are learning to live with all of it.

I’m no longer sad all the time though sometimes I wonder where all the sadness went. Again, I suspect it’s hiding just under the surface of this new life we’re living, quietly nestled in beside the horror. Regardless, I’m amazed by the human capacity for adaptation. When faced with horror, even life-threatening horror, all of us try to adapt. We strive to live, we seek balance within the unbalanced, and somehow we make it work.

Sometimes I wonder how many more adjustments will be required of us, of him, and of me. Michael is more accepting since his enlightenment, and thank god for that. He still has his initial human reaction to things but then settles into acceptance and calm. I, on the other hand, must go through various whirlings of emotion and thought in order to accommodate this new reality. I am learning to adjust though the cost is often high in terms of the emotional turbulence that plays in the back of my mind.

This all puts me in mind of the Adjustment card in the Thoth tarot deck. It is the Justice card of most other tarot decks and they both speak of balance. But it is important to understand that it is a precarious balance requiring absolute stillness and concentration to maintain it. According to various interpretations of this card, the slightest distracting thought can destroy this balance, this adjustment.

Now I am excruciatingly aware of the thoughts that upset this balance and I find that any thoughts of the past or the future are dangerous, for both are filled with unreality.

The past often leads back to the good times — to vacations at the ocean or the mountains, to raising three good boys, to the adventure of creating a healing center together, to dancing with a partner who knew my every move, to a daily life that was generally kind and calm. The past is also a place of regret. For who among us doesn’t regret some of the choices we’ve made, some of the moments we’ve lost, some of the harsh words we’ve spoken?

The future is even more fraught and I’m learning to be suspicious of the inevitable expectations that arise. Looking ahead is either filled with hopes and fantasies about returning to a more golden time, or it is full of the darkness of deterioration, grief, loss, and death.

So now Adjustment is my newest teacher in this long process. She is a harsh mistress for she demands greater consciousness in every moment in order to maintain this still and balanced center. If I forget her lesson, I can suddenly find myself in anxiety, sorrow, or despair.

It is this constant dance of Adjustment between centeredness and uncenteredness which is the instruction here, and it is this constant effort that is the real work — the coming back to center again and again and again. Living in the present moment has never been a greater challenge and yet it is exactly this that every spiritual philosophy exhorts us to accomplish.

There is some kind of Adjustment, some kind of Justice, to be found in these gyrations. There is some kind of learning that only great harshness and suffering can teach. It is such a deep lesson, this learning to be present, and after the painful gyrations I return again to gratitude. For in this pain, I know I am being taught exactly what I need to learn.

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

Screen Shot 2017-10-24 at 2.27.21 PMHalf 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. 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.

Chemotherapy Begins

chemo

November 14, 2016

I’m experiencing a cascade of images and emotions after our first full day of outpatient chemotherapy.

To start, we are directed to the “Infusion Therapy Center” for treatment. What a euphemism! It sounds like some luxurious spa with aromatherapy wafting through the air and quiet music playing in the background. Instead it is filled with people, all kinds of people, from the truly aged, to several prisoners, to people who look far too young to be enduring such an assault. And though the hospital has done everything they can to make chemo as pleasant as possible, it’s still a matter of poisoning bodies in order to save them. The place is packed!

Second, every appointment takes much longer than we think it’s going to take. Our one hour appointment stretches into over 4 hours today pushing several other things that need to be done into the busy afternoon. We aren’t prepared for this and we end up eating awful hospital food to fill the voids of stomach and heart that well up in such a place.

Michael also receives a new poison today, a drug called Cytoxan, and at least it has “toxin” in its name. It’s the only honestly named drug he’s gotten so far. We aren’t expecting this since we’d been told that it would come next week and that it would be on its own. Now it’s combined with the other chemo drugs and we are at the mercy of a system that changes rapidly and without explanation.

We ask for clarification and receive our new schedule for weekly chemo for the next year. I’m still wondering if the changes are due to the fact that Michael’s bone marrow aspiration from last week continues to show 3% abnormal cell activity. Though we’d been hoping for 0%, the doctor didn’t seem concerned. He said that Amyloidosis responds more slowly than other types of problems. Regardless, the initial regimen we were told about has changed and it leaves me wondering why.

It’s also weird the way the chemo drugs are delivered. There’s a check and double-check and triple-check system in place which is probably all to the good. But then, the nurse gowns up and puts on gloves and a mask just to hang the highly packaged drug on the IV stand. Michael makes a comment about how “this could shake one’s confidence” and the nurse says that as long as it goes into his vein and nowhere else, it’s fine. In other words, as long as the toxin doesn’t squirt out onto anyone else and stays in my dear husband’s veins, it’s fine because it’s only poisoning him.

We overhear an old woman being pushed in a wheelchair by an old man as they come to say goodbye to the nursing staff. She says, “Well, I’m 80 years old and my tumor has gotten bigger. I’m just not going to fight it anymore. I’ve fought the good fight and now I’m stopping.” Clearly, she is meaning that she has decided to die. The nurses really don’t know what to say and opt for soothing things, wishing her well, and avoiding any talk of death or dying.

It leaves me to pondering what one says when faced with a person who has decided to die? I want to say something like, “good for you.” If I knew her I would ask her how she’s feeling about her decision, but I don’t know her, and it would be odd. Her husband stands stoically by, uncomfortable and silent, while Michael and I sit nearby in our little cubicle struck by the stark honesty, boldness, and grace of her decision.

I’m finding that this aggressive language of cancer with its war-like metaphors has never sat comfortably in my soul. So, after the woman leaves, I ask Michael if he feels he is “fighting” for his life. Michael says that it doesn’t feel like it’s a battle to him. He’s making an “effort” but it’s more of a “passage between one stage and whatever comes next.” In other words, neither of us has an adequate way of talking about this process. It’s not a war, it’s something far more mysterious and unnameable. There’s an acceptance of the reality and an intention to live a longer life, but there’s also an acceptance that it simply might not work.

So here we are. Whether we say it directly or not, Michael is facing the possibility of his death, and he is unafraid. And, really, I hope I’m facing into the possibility of my own death. In fact, it’s not even a possibility for any of us. It’s an absolute certainty, and so often we don’t really speak this way. We allow our egos to avoid and temporize and deny, as if Michael may be dying, but we are not. It is such a human thing to do.

People visit and tell Michael how good he’s looking, and I suppose he is looking good for someone who’s being poisoned. But really, I look at him and it breaks my heart. His body is going through hell and I can see the hell in his eyes, his skin, and his wasted muscles.

And then I look at his spirit and it is strong and vibrant and filled with light. Perhaps this is the stark contrast that any awake person experiences as the body begins to die – the contrast of body and spirit – one in decline while the other reaches toward infinity.

The Storm

Screen Shot 2017-09-15 at 5.56.56 AM
8/05/2016

How do I describe a waking nightmare? How do I impart the full horror of a day that changed my life forever?

My husband, Michael, has been having strange symptoms for a couple of years and at my insistence, we have seen several doctors to get a diagnosis. Nothing changes after biopsies, thyroid medication, and blood tests until our local internist sees suspicious results and refers us to the Mayo Clinic.

Luckily, my son who is a physician “happens” to be at Mayo doing research at the same time as we are there. He moves us through the maze of clinics and tests and sits with us through the endless waiting periods. He also knows how to talk “doctor talk” and the physician in charge of Michael’s case becomes much more transparent and helpful once my son is in the room with us.

After three days of testing that includes a bone marrow aspiration, a fat pad biopsy, a cardiac consult, and blood and urine tests, Michael is diagnosed with Amyloidosis – a life-threatening illness that attacks the bone marrow and organs of the body. The doctor wants us back again in a week for more testing in order to determine which organ systems are being affected. Today, at the end of our stay, he emphasizes the importance of a quick response which makes our local hospital’s slow appointment plan look inadequate and scary.

The doctor recommends a stem cell transplant and chemotherapy and we are made to understand how sick my husband will be after this transplant — literally at death’s door with no immune function and in strict isolation. We are told it will be 6-8 weeks of living in Rochester, Minnesota, with me trying to find a place to stay and paying around $6000 to do so – hundreds of miles from our support system and our home. It’s almost unimaginable. And yet, it looks like the best bet for a good outcome for Michael. I’m horror-stricken but I cannot cry. Michael does not cry either, but then he almost never cries. I am the one who expresses emotion in our relationship, but this emotion is simply too much.

We get into our car to drive home, both of us silent and thoughtful, in shock really, over what we now must face — not realizing yet that what we are facing is a complete change in every facet of our lives.

On the way home the sky darkens and turns the sickly ominous green color that signals tornadoes in the area. Soon we are driving in torrential rain — Biblical rain, a horrible cacophony of lightning and thunder, and water pouring from the sky so densely that it forces us to stop the car many times because we cannot see to go on.

My other son calls wanting to know what we found out at the hospital. He begins to cry when he hears the news and finally, I can cry while Michael drives cautiously through the ever-deepening storm. I look up from the phone call and find we are on a highway that we’ve never been on before, and we are lost – literally, lost in the storm. Michael missed our turn while I was on the phone back in the little town we passed a half hour earlier and we are going the wrong way. Now we backtrack and a bleak long trip becomes even longer as we drive through the furious gloom.

We stop to rest a few minutes in the little town hoping that the rain will ease up. We’re hungry and tired but the only restaurant that is open is the Dairy Queen and neither of us can face it. The weather map looks like we haven’t even hit the center of the storm yet and in fact, that center is following our path down the road toward home. We decide to go on hoping we can outrun it.

Finally, we are on the right road but just as we leave the little town we get an emergency call from our local doctor saying that they found something wrong with Michael’s heart. She insists that Michael must pull the car over to the side of the road immediately! He is to stop driving because he could go into cardiac arrest “at any minute without warning.” Michael has always been the driver in our relationship preferring to be the one in charge of our vehicle while I’ve been content to ride along, enjoying the scenery. Apparently, this will no longer be the pattern and it looks like I won’t be enjoying the scenery as much as I used to.

So now I am in the driver’s seat in the horrible storm, not able to see more than a few feet in front of us, terrified that my husband might die on our way home. “This is a nightmare!” I say. He agrees and offers assurance that his heart is fine. But we both know that his assurances are pale and meaningless.

The sun is going down and soon I am navigating on the interstate in complete darkness – the only guidance coming from the lightning and the other travelers’ tail lights as we move cautiously through the raw chaotic power that surrounds us. Trucks thunder by, leaving our windshield drenched and opaque, leaving me literally driving blind. It’s as if the very atmosphere is echoing our journey into unknown and frightening territory. I am half hysterical as we finally come within 30 miles of home. My whole being tightens to steer us through the remaining terror of this night.

In spite of this, I speak calmly the words that I feel must be said, “Some part of you is really playing with death right now. We have to face this.” Michael pauses for a long moment and says, “You have to die to get a rebirth.” Of course this is true. It is even a truism within the metaphorical language that guides my understanding. But death and rebirth can happen at many levels, from the mundane to the profound.

If this is the death before the rebirth, it is a harrowing death, as perhaps many deaths are. But the rebirth could be into a new and healthier life, a new and healthier relationship. And just as possible, it could be Michael’s journey into the final letting go of his sick and burdened body. We don’t know and we cannot know. Finally, we reach home and magically the rain stops and the dazzling clear light of stars appears overhead. We are both grateful and heavy-hearted — knowing that for now, the storm is over.