Anger and Bliss

The transformation of each of us takes place at the center, where the suffering is the most intense.

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01/21/2018

Last week we received Michael’s new numbers from the hospital, the numbers that speak to us of progress or lack of progress with his disease. The numbers still aren’t good.

As I take in this new information the usual feelings overwhelm me. I seem to have to work through the same cacophony every time: shock, frustration, resignation, sorrow, and finally, acceptance. But this week is different. This week I feel anger sneaking its snarly little head into the mix, stuck in the crevice between resignation and sorrow. And though anger has been here before, this is an onslaught and it stays with me for several days.

Along with Michael’s quality of life, my life quality has also diminished considerably and I begin to justify my angry stance. “I’m sick of this life we have. I feel like a prisoner. How much longer is this going to go on? What’s he hanging on to? Why can’t he let go? Why can’t he die?” ‘Prisoner’ and ‘die’ are the words that stand out to me and I hear how angry and resentful I am. These are true feelings, but these are not the beautiful feelings. This is how ugly it can get inside a human mind.

After a few days I find my better self and I speak gently with Michael about my anger. In turn, he shares his own version of the darkness, “It’s not fair that I got this illness! It’s taking everything from me. My life has been destroyed. I can’t whistle, I can’t walk the way I used to, my ability to pursue my life has been taken away. My hands are clumsy and eating is a problem. Why don’t I just die? It would be better for everyone if I just died.”

As he speaks I realize that these stories of victimization are understandable and normal. But they are not pretty, and certainly not the way either one of us wants to feel. It is the mind’s way of coping with events that are just too hard and too brutal to grasp and our minds make up all kinds of stories to explain the pain we are in. It takes real effort to witness this mind game and to realize that it doesn’t need to be believed. We are not our thoughts!

To work through the anger and the stories, I have to muster the courage and humility to speak it to Michael. Thankfully, he can hear me. We are good partners, and I am grateful for the gentle ways in which we are treating each other. I’m not saying we haven’t always been kind and respectful, because we have. But it is deeper now because there’s more at stake. We both know this and we both work at this.

As soon as I hear the story I’m telling myself, and once I say it out loud, I realize again that I’m not a victim here. I’m exactly where I should be, and exactly where I’m supposed to be. For what good does it do to believe otherwise?

For instance, if I’m not exactly where I’m supposed to be, then where am I? Where I’m not supposed to be? How can that even be possible? If I’m here, then I’m supposed to be here. It’s just a rule of reality.

Of course that doesn’t mean that I don’t strive toward the Good, strive toward growth and something better, for that striving is infinite and ongoing. But to recognize the Good, it feels to me that first we need to recognize exactly where we are so that we can know in which direction to point ourselves.

At a spiritual level, to find the Good, the only way I can make sense of it is to recognize that every element of reality, in any situation, is here for my potential growth. And I mean every bit of it – including the mean thoughts and feelings I have about my sick husband. If I don’t admit to these feelings, they grow and fester in the dark.

Every moment of this experience is here to show us to ourselves — all the pettiness and compassion and sorrow and love. And maybe the really hard stuff is the most important because not only are the consequences so dire, but the potential for growth is so high! For this is the suffering that most captures our attention.

The great psychologist, Jordan Peterson, talks about the symbolism of the Cross and the Labyrinth. In both of these symbols we travel from the outside toward the center. Peterson says that to understand these symbols, we have to realize that the transformation of each of us takes place at the center, where the suffering is the most intense. In other words, the greater the suffering, the greater the potential for transformation. I see that through this suffering comes the possibility to awaken wisdom and a kind of grace.

The truly remarkable thing to me is that neither one of us has actually “lost it.” Neither one of us has freaked out to the point of losing our integrity or our center. We are not filled with suffering. We recognize it, but it doesn’t own us, and it feels like it’s all just a matter of perspective. We can talk about our anger, a potentially dangerous topic, and we can do it with calm and decency and respect.

The further into the chaos and pain of illness we dive, and the more suffering we endure, the more the potential for transformation shows itself. I see that my anger is an expression of my fear and pain and I can recognize it for what it is — potential for huge growth!

Now, able to be at my best, I forgive myself for my anger. As I do, I see this time as allowing me more clarity than I have ever had, and I literally feel awash in love for myself and others. Similarly, a few nights ago, Michael spent the entire evening in bliss — the entire evening! Both of these experiences feel like a complete miracle to me.

It really is only a matter of perspective, and this level of perspective can be taken by any of us. When we find ourselves suffering, we can dare to face into it, we can dare to know that we are exactly where we are supposed to be, we can dare to be truthful and open. It simply involves taking responsibility for where we find ourselves and for telling the truth. It really is as clear as this.

At this point, Michael knows how I feel, and I know how Michael feels. We know each other’s myriad thoughts and feelings around death and dying. I sense that now anger may be more a part of the mix than it used to be. But even if it is, now I know its face and I’ve heard its speech. It will catch my attention sooner if it comes again. And if it comes,  I know everything is on the table between us, and I can continue to speak what needs to be spoken. What a relief! I have never had the opportunity to be this honest and free before, and I think Michael feels the same.

So weirdly, though grief is in the background of every day, this isn’t just some difficult time in our lives. It is also a time when waves of joy dance within us, when things are more important, when truth is paramount, and when consciousness allows us to rise above these horrors and see them for the human comedy that they truly are.  It is a time for loving each other in a deeper, different way.

For any of us, learning how to be with our suffering is one of the greatest gifts of any crisis. In it, there is real potential for deep recognition of the patterns that have bound us. Today I see that Michael and I are receiving a tremendous opportunity. I realize we are moving more consciously into our suffering and into our hearts. I feel us standing together, witnessing in awe, the huge blessings and mysteries that unfold around death.

Thin Ice

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

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December 21, 2017

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Intimations of Immortality

It is both the hardest year, and the most spiritually transformative year, of my adult life.

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September 4, 2017

It is my birthday today and I’m noticing again that birthdays contain a natural bend toward philosophizing, toward looking back, toward summing up. As I look back, all I can say for sure is that this has been a weird year – it is both the hardest year, and the most spiritually transformative year, of my adult life.

One year ago my birthday was spent in the hospital watching Michael receive  shots in his belly. These shots are meant to stimulate stem cell production so that when Michael’s stem cells are harvested and replaced, there will be a large number of them.

It’s gruesome. Michael can’t help making a face when the shots go in and I don’t blame him. It starts to become obvious over the course of several days that some of the nurses are really good at giving belly shots, and some are not. It’s painful to watch. At any rate, that’s how last year’s birthday was spent. It was the beginning of this journey of many hours in the hospital, many worries about the meaning of Michael’s illness, and not many answers.

This year is much different. One of my sons and his wife come from LA for a visit, filling the house with youthful energy and interests. Then, my brother and his wife kindly appear from Colorado. Finally, our friend Kathy is at our door with cupcakes that look like flowers, and it’s a party — the first party in our house in a long, long time and it feels great.

But now they all are gone and only their shadows remain to remind me of their good hearts and glad words. The house is suddenly quiet again, too quiet, and I feel the flatness of grief at their leaving. So today I am left with both a fullness and a sadness that feel pure. Neither is tainted with guilt or regret or unworthiness. It is the fullness that comes from knowing one is loved. It is the sadness for my husband, for the man who once was, for the life between us that once was. I am grateful for the simplicity of this feeling for often my feelings are confused and windblown like the leaves that are now beginning to fall.

The sadness is obvious. Our lives have changed immeasurably in ways both large and small. Michael looks worn and weary. He no longer stands straight, and when we hug, he is now shrunken to almost my own height. His arms are thin and bent. His skin is dry and paper-thin. He walks slowly, shuffling around the house like an old man, and when he goes for a walk, he takes a stick to steady himself.

This week also brought a further look into how things can be, how they turn on a dime, on the precarious rolling of the cosmic dice. Michael got a cold on our trip to see the total eclipse. It starts slowly when we return and then builds for a week until finally he is barely eating and so tired that even simple tasks like climbing the stairs are a strain, an effort almost beyond his current abilities.

I keep saying he looks bad and he keeps denying that things are worse.  A horrid huge bruise develops around his left eye. It is a dark angry red that morphs into dark purple and black, and it is very swollen. “I’m just tired,” he says, “I’ll be fine.” I look at him and feel is forehead. It is hot and I ask him if he has taken his temperature. He hasn’t and when I return a few minutes later he’s discovered that he has a fever. This forces an immediate and reluctant trip to the hospital for a fever is considered to be dangerous, even life-threatening.

On the way to the hospital I am angry with him for denying his symptoms, denying his feelings. It is an old dance between us and it’s still one that we indulge from time to time.

I remember the awful week in the hospital after his transplant. He was near death and waving me away from him, holding me away with hand gestures. “I’m fine,” he softly moaned, when he clearly wasn’t. Now in the car to the hospital unbidden tears fall down my face but I hide them from him. “This is who he is,” I tell myself. “He doesn’t want to be helpless or vulnerable. He wants to believe that his will is strong enough to overcome these problems.” But no one’s will is this strong.

At the hospital his fever has fallen to within “acceptably elevated limits” and he doesn’t have to be admitted. But there are ominous rattling sounds in his lower lungs and he is put on a strong antibiotic with weird side effects that interact with his chemotherapy. We are warned that in the next several months the antibiotic could cause his tendons to snap and break. Apparently this makes a loud noise, hurts a great deal, and requires surgery for repair. What a strange world of modern medicine in which we are plunged!

One of my friends tells me that her father is suddenly looking older and intuitively she knows that something is wrong. Another friend’s father has just been diagnosed with a type of leukemia, and another’s niece is in the last stage of cancer. My friends are now facing into exactly what I am facing – watching the inevitable waning of the physical form, the short or long journey into the dying and death of a loved one, anticipating the horrendous sense of loss that follows.

So what is this simple sorrow and this unexpected fullness that I’m feeling today? It feels like one of life’s deep truths — the truth of the decline and death that is coming for us all. Some of us may be luckier. We may have a sudden death, an accident, a heart attack, a short sweet illness with an easy end. But many of us will die exactly like this with a wearing away of vitality and energy until finally there isn’t much of anything left other than the animal body still clinging to its waning life.

But this is the way it is, isn’t it? This is what is happening all the time. People are born and people die. Life is both fragile and ferocious. It dies and insistently springs forth again and again. It can feel cruel and wrong. But it isn’t. It’s what we came here for. We’re here to watch those we love pass from this earth. We’re here to learn about living in a body that we know is going to die.

It would be easy to become either nihilistic or simplistically religious in the face of this. But I don’t believe that it’s all for nothing, and just as fiercely, I don’t believe in the Big Guy in the sky who will save me in the end.

Instead, I see life as a constantly evolving emergence from the depths of Mystery. We are lovingly created to experience it in all of its miraculous and myriad forms. We are here to learn that each form is sacred. And finally, we are here to rejoin the Mystery in the full awareness of our true formless Being.

This is Michael’s journey now – maybe sooner, maybe later – and it is the journey for all of us. He is feeling better today but I watch him nodding into sleep on the couch knowing that one day he won’t wake up. I wonder if I will be there to watch him die, and then I wonder who will be watching me in the end or whether I will die alone. I feel the terrible and intricate beauty of this life. I feel the ineffable sorrow and the loving fullness. And on this, the anniversary of my birth, all of it brings sweet tears to my eyes once again.

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.

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.

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.