Half Life

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

October 7, 2017

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

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

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

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

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

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

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

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

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

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

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

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

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

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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.

Michael and me – Enlightenment on the Path of Grief

After months of unexplained symptoms,  my husband, Michael, was diagnosed with a mortal illness in August, 2016. Four months before that, he attained enlightenment. Neither of us believes that this is an accident and we have found that his insights have greatly affected our “path of grief” on this journey through illness.

In March, 2017, I was also graced with further experiences of enlightened consciousness. I am certainly realizing that this is an ongoing journey, and none of us are ever “done” on our paths toward awakening. But since this time of greater awareness, I have been receiving strong messages that I am to write the story of our path in order that others may be helped on their own journeys through spiritual development, grief, illness, dying, and death.

I started sending out emails to friends and family about our experiences and received many encouragements to publish these writings in a larger format. This is my first attempt at doing so.

May you be blessed and supported in your own healing journey as you read these words.

With love,

Candida

enlightenment pic

What is Enlightenment?

When we speak of enlightenment, the question arises as to what it is that gets enlightened? It is certainly not your body. Your body can still become ill, can still suffer, and will definitely die someday – and since enlightenment is a permanent state of Being, it cannot be your body that gets enlightened.

It is also not your emotions that become enlightened. Though your emotions may move through you more easily, and may no longer catch you in endless rounds of feeling, the emotions still come and go, and are therefore impermanent. It cannot be your emotions that get enlightened.

Finally, it is not your mind that gets enlightened. The mind is filled with thoughts that tell you all kinds of stories, some of them amazing, and some of them disheartening. Regardless, these thoughts come and go and are never permanent. Enlightenment literally can’t be what you think it is because your thoughts are coming from your mind. And even if your mind is very subtle, and very smart, it cannot possibly know what enlightenment is. No matter how hard you try, and no matter how high the thoughts you think, it cannot be your mind that gets enlightened.

So what does get enlightened? The thing, if it can be called a “thing,” that gets enlightened is your Essence — the most essential part of your Being. And even this is not accurate. For this essence is already enlightened, always has been enlightened, and always will be enlightened. Enlightenment is the full realization of your essential nature.

Adya