Anniversary

wedding

June 26, 2017

It’s our 30th anniversary today, and it’s certainly the strangest anniversary we’ve had. We spent the morning in the cancer clinic and chemotherapy suite which is always strained and difficult. I find I am raw today and I cried for the first time in front of our nurse practitioner who has become our primary care provider. Maybe it’s because it’s our anniversary, or maybe I just needed a reason to cry since I haven’t been openly crying lately. But today held more questions about the future and the long term outcome for Michael.

Today also made it clear that the “year of chemotherapy” we began this journey with, wasn’t really just a year. At that time I naively believed that I could get through a year. It’s only 12 months. It will be difficult but doable. Now we’ve been offered yet another drug after this one, and the promise of more chemotherapy advances in the future if that one doesn’t work. In other words, Michael could be on chemo until the day he dies which is exactly what happens to a great many patients.

I asked about the future if we stop the chemo and of course, she doesn’t have any answers. We can’t know what would happen if Michael quits the chemo, and we can’t know what happens if he stays on it. But she is really glad that we are talking about the quality of life and she wishes everyone would talk about it rather than just going from drug to drug to drug.

It’s Michael’s decision of course, but the quality of life right now is terrible. He’s tired, and there’s a lot of sitting around the house, timing the various daily therapies, and eating mushy, gravy-laden foods that are the only things that work with his dry mouth and swollen tongue. His skin looks sick and sallow and his eyes have constant bruising and tearing. Even a little scrape against clothing can cause bleeding and cuts that don’t heal for weeks. Our days are full of numbing sameness and our nights are full of searching the TV for something uplifting or interesting.

So today is a harder day, and as one of my friends says, it’s not going to get any easier. The longer we walk this road, the harder it becomes. It’s just the truth of long term mortal illness and the endless machinations of drugs and treatment regimens.

And because it is our anniversary, I’ve been thinking about our marriage vows more deeply. In fact, I went to the bookcase in which I was sure I had stored our vows only to find that the book I’d written them in wasn’t there. It’s not anywhere that I thought it would be and I’m puzzled by the metaphor that appears before me now – the “loss” of our vows. Clearly, it is a good time to deepen into those vows of 30 years ago but I have to do it from memory rather than from the actual words.

I’m sure there was something in the vows about “in sickness and in health” — some kind of acknowledgement that we are in this together, come what may. But we were so young then – mid-30’s – and we didn’t have a clue about what we were promising. Both of us were healthy active adults with children to care for, careers to grow, and a house that promised to hold us all together. We’ve been lucky. Our marriage has been a joy and a fellowship of mutual support, kindness, and deep soul connection.

Now with Michael’s illness, the “in sickness” part of our vows has become much more real. Though I had kidney cancer 18 years ago my recovery was relatively quick and uncomplicated. It left me with years of unexplained fatigue but we still went to work, went on vacations, had parties, visited grown children, had friends over for dinner, and lived a more or less ordinary life. Now our life is far from ordinary and both of us mourn its demise.

So I support him in his sickness knowing that it may never be healed, knowing that whether I like it or not, I choose to live out this vow made 30 years ago. It’s a tougher vow than I realized at the time of course, but it’s a vow that speaks to one’s integrity and one’s soul and I know that I am growing in both of these.

We spoke with a psychic recently, a woman we trust, a woman who has given us good advice over the years. And I’ve been watching Michael since that time, watching to see what he is going to do with the information she gave us.

She said Michael’s illness is all about the long term karma of self-sacrifice. She said he’s been a healer in many lifetimes, and each of those lives has involved giving too much and not receiving enough in return. She says the cure for Michael is to meditate on the light and dissolve into it. He’s good at this and he takes this task seriously. The cure is also for him “to learn the energy of receiving.”

He’s been puzzling over this and I’ve been asking him what he thinks it means. So far, no real answer has emerged for him and I’m not really sure that one will. The psychic also said that since Michael has attained his enlightenment, he will not have to return to an earthly existence. Now he sees our whole scenario as a “win-win” situation — either he’s healed and he lives a normal life span, or he dies and he dissolves into the Oneness that is his true home.

In our conversation about the psychic reading he asked me what I needed and I found myself saying, “I need you to get better!” It was so childish, really, a child’s cry against the unwavering reality of physical decline. I knew it was childish but it was also true, and I dissolved into tears.

I can see that these patterns probably aren’t going to change. For what is the energy of receiving? It must involve the opening of the heart and truly knowing that you can’t do it alone. And this is a man who has always done it alone as long as I was at his side. He has never admitted defeat, has never needed anyone but me to help him, has never been overwhelmed by this life, this illness.

But I can also see where this is leading. At some point, he will be gone, and I can see that at the level of his enlightened consciousness, it’s all the same to him.

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.

The Talk

Heart sidewalk

January 17, 2017

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Staying Strong

Beatrice

December 29, 2016

“Stay strong!” These are the last words my son says to me as he and his wife board their plane back to LA after their holiday visit with us.

“Stay strong,” and of course he is right but immediately the questions arise. Others have also used this phrase with me. It’s so easy to say, such a short and concise edict for behavior in the face of…. what? My husband’s illness and debilitation? The obvious loss of the life we once knew? The sometimes overwhelming physical, emotional, and mental tasks that this involves?

What does it really mean to stay strong? My husband is sick, really sick, and in chemotherapy for the next 10 months or longer. I have watched the effects of the last four months of hospitalization, a stem cell transplant, and massive doses of poison, and I think, what does being “strong” look like now?

Does being strong mean that you don’t cry? If that’s what it means, I’m failing miserably. I’ve cried and cried, usually just a few tears but sometimes by myself, I wail. I mean that literally – I wail! I wail with grief and stress and sadness and frustration and pain. And there’s really no way that I could do this otherwise. So I don’t believe that staying strong means not crying. In fact, just the opposite. If I wasn’t crying, I’d be going insane. I’d be suppressing very real emotions that must be expressed, that must find the light of truth, that must be loved and accepted for what they are – the simple and complicated sorrow of a loved one’s mortal illness.

My son is not comfortable with my tears and I don’t blame him. I mean, who really wants to see their mother cry? And I wonder if all the people who exhort me to stay strong are also uncomfortable with tears. Or is this exhortation something else?

I’ve been struck over and over by the “happy face” that people put on in the chemotherapy unit. It’s upbeat in a bizarre and shallow way. Can this be what is meant by staying strong?

People chat about little things, unimportant things – what they got for their birthday, what happened on their drive to the hospital, what their daughter said to their mother, the TV show they watched last night. So much talk about the inconsequential and the mundane. It is this happy talk that is the most disconcerting to both of us because it feels like a denial of the harsh reality we are facing.

Clearly it would be worse if everyone came into this unit complaining and focusing on the negative forces that surround us here. But surely this happy talk isn’t what is meant by staying strong.

Every now and then someone talks about the effects of the drugs they are ingesting, about how hard it is to sleep or eat, about how weak they feel. But this is said with a laugh and a smile, and is immediately countered with more laughter and a happily resigned statement of acceptance. “Oh well, it will be fine.”

Sometimes the chemotherapy effects are talked about with obvious depression and hopelessness. This is harder and is met with silence or negation. “It will get better. You’ll see. Just hang in there.” In either instance, the underlying message doesn’t get acknowledged. It’s just too hard for most of us to hear! We don’t know what to say in the face of this pain and suffering and so we slip into deflection and denial. We tell the sick person how good they are looking and we focus on the latest medical discoveries or the next holiday or who is coming to visit soon. We certainly don’t talk about dying.

Meanwhile, Michael and I sit in our chemo cubicle in relative silence. We meditate or read books or listen to podcasts. Anything to distract us from the reality of the poison that is entering Michael’s body. But really, is what we are doing any better than what these other people are doing? It’s different, yes, but we’re all just trying to get through something that is simply awful.

As I think about it, staying strong must mean continuing to face into the truth of what is happening to me, to my husband, to us. We’ve lost so much already and of course we are looking at the possibility of losing more. Clearly, things will never be the same again and our old life is gone.

But that’s true for all of us. Every moment of every day things are changing and our old lives are gone. Not all of us are facing into the truth of mortal illness, but all of us have our own truths to face. Certainly that must be part of what it means to stay strong – to face into all of the hard truths as deeply and clearly as possible, the hard truths of all of our feelings, all of our thoughts — and to face them with courage and love.

Michael made a card for me for Christmas around the theme of Dante and Beatrice saying that I am his Beatrice, journeying with him to Paradise. It ends with a quote: “Do not be afraid; Our fate cannot be taken from us; It is a gift!” And perhaps this is the strongest place for any of us to stand — squarely facing our fate and realizing over and over that it is a blessing and truly, it is a gift.

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.