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.

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 in 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.