Thin Ice

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

Screen Shot 2017-12-22 at 8.37.47 AM

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.

Metaphors

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.

A Week in Hell

There have been 3 weeks of hell in this process so far. This past week has been one of them.

hell doors

8/1/17

There have been 3 weeks of hell in this process so far. This past week has been one of them.

The first one was the week of frantic driving to the Mayo Clinic, three days of invasive tests to receive Michael’s devastating diagnosis, the reality and shock only beginning to settle in as we drive home through the most terrifying storm, the most Biblical storm, I’ve ever driven in. On the way, our Iowa City doctor calls to tell us that Michael has ventricular tachycardia and he must stop driving “Now!” because he could die at any minute. I slip into the driver’s seat with no ability to assimilate this latest information as we drive through the horror of this night. We have to stop three times on the way home because sheets of rain are so dense that they cover the windshield obscuring vision that only lightning illuminates. The terrifying weather resonates perfectly with my inner terror – the shock of lightning, the horror of thunder and blinding rain, the bleak dark landscape with nothing but empty blackness ahead. This was a week from hell.

The second week was when Michael was near death in the hospital after his transplant with a white blood count of almost zero, not eating or drinking, with diarrhea and diapers, and only able to grunt and moan in communication. He literally doesn’t remember this week which is burned into me like liquid iron. This was a week from hell.

And then there’s this past week…. It started on Friday with Michael’s 5th bone marrow aspiration. It’s a horrible procedure to watch but it’s the kind of horror that I simply cannot turn away from. Sometimes I wish I was the kind of person who turns away, but I’m not. When horror presents itself, I feel I’m there to witness it. The aspiration literally involves having a large needle screwed into the hip bone so that the marrow can be extracted. It’s one of the ways the doctors keep track of what is really going on with Michael’s body and it happens every 3 months.

Luckily Michael is on morphine during these procedures and says they don’t bother him at all. I, on the other hand, am not on morphine though I can definitely see the appeal. It’s one of those squeamish procedures in which one sees bone being breached by a large, long needle, the needle literally thunking into the midst of the bone. Then the marrow, a bit thicker and darker than blood, is extracted and examined. It always makes me a little bit sick, nauseous really, but I am duty-bound to be there, to observe it, to undergo it with him.

We come home and Michael sleeps it off while I steady my stomach with some food, a walk and yoga. As I’m walking I think, “Darby is coming tomorrow!” and it makes me happy.

My son Darby has said that as an early birthday present he will visit and help me clean the basement. Michael is not allowed to be around dust and molds and of course, the basement is full of them, so Darby’s offer of assistance is necessary for any kind of movement in the vehement cacophony of basement trash.

The Basement! Like many basements, it’s become the repository for all the things we don’t want to deal with, don’t want to see. And it’s really bothering me. I know there are things in the basement that need to be cleared, need to be encountered, need to be revealed.

It’s been piled with boxes of stuff since we moved into this house almost 3 years ago. There’s a large pile of old area rugs. There are boxes of taxes, foodstuffs, lamps, bookcases, kitchenware, paint, art supplies, camping equipment, and luggage. There are Christmas decorations, mementos of my children’s childhoods, and record albums and CDs we haven’t listened to in years. There are old chests, old artwork, and really old photographs and written records tied up in boxes. The list goes on and on.

Darby and I work like dogs, or at least that’s how I feel — hard, physical labor. Up and down the basement stairs a hundred times carrying every heavy and awkward thing imaginable. Loaded car trips to Crowded Closet, the Crisis Center, and the recycling center begin to make a dent in the chaos.

Finally we come to the 40-year old painted wooden toy chest. I open the lid and find the box Michael has been looking for! It’s all his childhood stuff, family stuff, his baby pictures, his report cards, his school photos, him in his college Corps uniform, pictures of his son from babyhood and childhood. It’s his memory box. As soon as I move the box a cloud of black dust rises into my face. I look down inside the edge of the chest and there is black watery mold all along it. There’s a moment of horror as Darby and I both realize — this is black mold!

We look at each other and immediately know that all of the chest’s contents are contaminated and have to be destroyed. All of Michael’s mementos are full of death. I tell Michael and he goes and sits in his study. I think that this is hard for him but we don’t talk about it yet.

Darby and I put on masks and gloves and get the handcart that will allow us to move this ailing behemoth of a chest. The whole bottom of it is covered with the mold. It’s almost falling apart and it feels like it weighs a ton. We carefully walk it onto the cart. Darby pulls it up the stairs one awful heaving step at a time while Michael, who is now also gloved and masked, and I push the thing up from below to keep it from toppling. We finally get it to the curb with a huge sigh of relief and the sense of having dodged some sort of odd worldly bullet.

Michael goes into the house and Darby and I get into the car to head for Crowded Closet. “Well that was certainly an obvious metaphor,” he says. “Yes,” I agree. “Could it have been any more obvious?” We’re both laughing somewhat hysterically. “I mean, what did God want to say here?” Darby booms. “I mean, I’m not sure what the message was, God, so maybe you want to make it clearer!”

“Yeah, it’s not entirely clear, is it?” I laugh. “Hmm. Michael’s memory box is full of death! You think? Maybe Michael is supposed to let go of his memories….” Darby and I riff on this for awhile but we’re both pretty impressed. Metaphors this intense don’t come along every day.

We spend the next day and a half finishing the huge and filthy task of cleaning this basement, this unconscious mind that Michael and I have created, this part of ourselves that we haven’t been wanting to see. It feels Herculean, the cleaning of the Augean stables. Eventually, it is done. It’s been difficult but is entirely satisfying to my Virgo’s need for order and beauty.

Monday dawns well. I receive a lovely email from Darby’s wife and Michael gets the news that for the first time since we started this journey of illness a year ago, his bad numbers are finally coming down, moving toward the normal range. It’s phenomenal! Joyful! Hopeful! He goes to his chemotherapy appointment with more positive energy than either of us has felt in months.

Then a phone call from radiology arises. I’ve had an unusual mammogram. There are two spots that need to be looked at again. How soon can I come in? Tomorrow? Great. So as if any of us needed another reminder of Impermanence, there it is. A bad mammogram, a test that can mean so many things.

I have another mammogram and an ultrasound the next day. One of the spots is a cyst, the other one isn’t so easy to classify. The doctor says I can wait and watch it for a few months or I can have a breast biopsy. Of course I choose the biopsy. I can’t imagine walking around for several months wondering if I have breast cancer but this decision has many consequences – the largest being the emotional toll it will take on me and the people who love me.

I text Michael and my sons with the news on the way home. When I come in the door Darby says, “Want to hear something really weird? I just got a call saying that Dad got taken to the hospital in an ambulance! He’s having heart problems. There’s some kind of bizarre déjà vu going on here!” And it is bizarre.

Eighteen years ago on the very day that I was diagnosed with kidney cancer, my children’s father was told that he would need a quadruple heart bypass. Both of us ended up in the hospital at the same time, both of us with life-threatening conditions, both of us seriously ill.

It turns out that while my ex-husband was on the Great Bike Ride Across Iowa in the desperate heat of late July, he had become dehydrated. His heart went into atrial fibrillation, a fluttery and chaotic heart rhythm, and soon an ambulance is carrying him to a hospital in Mason City. We’re all a bit shaken and we wait uneasily for more news. Luckily, his heart recovers quickly and he ends his bike ride to come home.

Darby sees his Dad the next morning for breakfast and then I take Darby to the airport to go back to LA. I shed a few tears as he leaves but only a few. I’m not sure what is happening in my emotional field but I’m not reacting in ways I thought I would.

That afternoon we have our first appointment with Michael’s new doctor. He seems friendly and busy and he delivers news we haven’t heard before. Apparently the hope was that Michael’s numbers would be in the normal range long before this, and they’ve never even gotten close until now. The doctor sees the progress of his current chemotherapy regimen and he tells us that once Michael is at a normal level, he will have another year of chemo to endure.

Another year! I am floored. My heart sinks and there’s a heaviness in my chest that is almost unbearable. We’d been told at the outset that there would be a year of chemo after the transplant. We had accepted that and had been expecting we would be done with these poisons in the next 2-3 months. Now we’re looking at 14-15 more months. I feel like I can’t take this in. It’s simply too much.

When we arrive home we hear from Michael’s sister that his mother is in the ER after she became dizzy and nauseous and then fainted. Later she is admitted to the hospital for observation of her heart. We are more than a thousand miles away and all we can do is wait to hear what’s going on. Michael is completely worn out while I continue to be in an odd state of detachment.

I know I’m going through a lot – the bone marrow aspiration, the breast exams and the upcoming biopsy, the basement cleaning, the black mold, the additional year of chemotherapy, the heart problems of my ex-husband and my mother-in-law, my son coming and going. It’s all too much! And yet, still I don’t cry, I can’t cry, and I’m not sure why.

That evening Michael is so tired he’s in bed by 7pm while I watch some mindless thing on TV, just trying to find a break from all the chaos. I go upstairs and look in on him to find that he is barely awake. He reaches for me and I go to him, hugging and kissing him, and for a moment I bury my face in his neck.

It’s Michael’s smell! It’s the smell that I’ve known for 34 years. And now 34 years of memories come tumbling through me, moment after moment of this smell, this smell that I’d almost forgotten, that I hadn’t smelled in these last 12 months, this deep animal comfort, this home.

I leave the room, leave him to sleep, and find that at last, this smell has brought me to my knees. At last I am crying. It’s all been too much, all of it, all of these last 12 months, all of this suffering, all of this fear and worry, all of the heartache. I cry and cry.

I go to the breast biopsy alone. Others have offered to be with me but I’ve decided to face it alone and I’m not sure why. My blood pressure turns out to be the highest it’s been in years which isn’t that surprising, though I am surprised. I’d been feeling calm, feeling I could face whatever might come. And now I see that my body is really nervous. I send it messages of love and understanding. I tell my breasts they are fine.

The procedure isn’t as bad as it could be. There’s a lot of numbing beforehand, and the doctor says that the “vacuum” biopsy will be over relatively quickly. It hurts deeply for a brief time and the nurse tells me I’m being “so strong.” I wonder if she says this to everyone, but it doesn’t matter. It makes me realize that in spite of the fact that I feel like I’m ready to fall apart, that just one more nudge would put me over the edge, I’m doing ok. I’m hanging on. I go into a meditative state, and the biopsy is over. Seven days of hell ends with this.

Today we hear that the biopsy is benign! We also hear that Michael’s mother won’t be able to visit this week because of the medical problems she is having. When I hear this news I realize that this is the Way of the World. Perhaps it’s been a condensed version of it in this week of hell, but this is how it works. There are ups and there are downs, there are gains and losses, and sometimes the ups last for days or weeks or even years, and sometimes the downs do too.

And no matter what, it’s all about learning to find that sacred space in-between. It is the space that recognizes it’s all grist for the mill, that every moment, every event, is here to teach us to grow our souls ever more consciously, ever more kindly, with ever more love. It’s all here to wake us up. Bless it all. It’s all a gift, a kismet, a mystery, all unfolding exactly as it’s supposed to.

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.