Facing into the dark

In nine days I will have finished chemotherapy. It has not been nearly what I’d feared it would be. The side effects were subtle. The nausea was fairly easily controlled with medication. I got one mouth sore, and my fingertips cracked and peeled. I have a tiny bit of nerve damage in three fingertips on one hand. I had a lot of weariness, and a huge amount of paranoia, but I was okay. Soon I will get a vacation, and then radiation for five weeks, and then reconstruction.

I know a number of people with cancer, however, and for many of them, treatment for the disease has itself been a trip through hell. I know people who have been on the same drugs I have been on who were unable to continue them because the side effects were so severe: muscle aches, fevers, inability to even get out of bed, bleeding. A friend’s nephew experienced severe mouth sores and numerous apparent brain bleeds (small strokes they think) that had him living in another world, and had those who loved him thinking he might be preparing to leave this one. I have known of people whose bones were so brittle from the treatments that sitting on them caused them to fracture. From the treatment, and from the cancer itself, there has been unremitting pain.

You call me brave? You call me a warrior? I have not been in those trenches. If I am in the war against cancer, I am one of the people sitting in the air conditioned office. I am not on those front lines.

Beyond that, however, is the deepest darkness of cancer, and that is death. This is something I have not even really considered for myself. I know I am not going to die at this time, at least not from cancer. I know that at this moment I am cancer free and I am undergoing aggressive treatment in order to try to prevent its return. I know it can return. There is a 20 to 40 percent chance of that, and if it does, it returns as metastatic breast cancer, Stage 4, considered incurable. Treatable, but incurable. I’m not sure exactly what that means, to tell you the truth. But I have a friend who had Stage 3A breast cancer, went through treatment and was in remission. Her doctors told her she would not die of breast cancer, that she would likely die of something else. But then the cancer returned, metastasized to her liver this time. She was fighting it, was receiving treatment with Taxol, the drug I am currently on. We had many conversations about breast cancer, but then I didn’t hear from her for awhile. People always seem to want to encourage me. Nobody ever wants to tell me that they are not doing well. I just read yesterday from her sister that she had been admitted to the hospital. Her sister asked for prayers for my friend’s adult children, for her husband, for her siblings. But she did not ask for prayers for my friend, which told me that she had probably gone to the hospital to die.

Another woman I know, a delightful human being, who hired me for my first job back in the work force after having been a stay at home mom for a number of years, recently lost her battle against cancer as well. She’d fought a particularly aggressive form of thyroid cancer for a couple of years, and had well outlived her original prognosis. She encouraged me in my own battle, gave me helpful hints for dealing with some side effects of treatment. She was always positive, and when asked never really said she was not doing well. Recently she’d been diagnosed with breast cancer as well and underwent a lumpectomy. That doesn’t sound like someone who was facing a terminal diagnosis for another condition, does it? Then I heard she had gone to the hospital, and then released to home. Her mother came, her sister was there, and they stayed with her all day and all night. Perhaps it could be assumed, but nobody said she was dying, and I didn’t believe it, until the message came that she was gone.

It is so difficult to grasp how people can be so alive one day, and gone so soon after. It is so difficult for the body to be here without the animating spirit, never to speak again, never to hold the ones they love again.

It also brings home to me the fact that this disease I am fighting is not a trivial matter. It is deadly. I remember feeling so blasé about it all when I was asked to return for a second mammogram and ultrasound. Oh, it’s nothing, I thought. I remember walking from my car into the clinic, through the shaded tunnel, along the sidewalk with the squiggly path paved into it, and thinking, “Oh, wait, this might be an important moment,” and being both shocked by that thought and unable to really internalize it. I think I have carried that with me through this whole thing. Deny it and it will be okay.

I finally picked up a book I’d had on my shelf since before my diagnosis: When Breath Becomes Air, by Paul Kalanithi. This is the memoir of a doctor who died of lung cancer. I hadn’t been able to read it before, because I was not willing to look into that darkness. Then for some reason I decided it was time. The darkness had touched me, in friends who had been fellow warriors in this battle dying on the field. I began to feel a need to look into that place, to assess whether I would have the courage to face it if that time came.

Kalanithi was a neurologist, who had a fascination with the juxtaposition of the physical and the spiritual. He wanted in particular to understand death. He had obtained a masters degree in English literature from Stanford University. For his thesis he wrote about Walt Whitman’s quest to understand “the physiological-spiritual man.” He found no answers there, however, and decided to go to medical school. “It would allow me a chance to find answers that are not in books, to find a different sort of sublime, to forge relationships with the suffering, and to keep following the questions of what makes human life meaningful, even in the face of death and decay.” To this end, he chose the field of neurology. He witnessed much, but if he came up with “the” answers, I didn’t grasp them from this book. He knows now, of course. But he can no longer tell us.

What he did convey was how we might live life in the face of our dying. “Grand illnesses are supposed to be life-clarifying,” he wrote. “Instead, I knew I was going to die — but I’d known that before. My state of knowledge was the same, but my ability to make lunch plans had been shot to hell.” What do we do from day to day when we know there are not an inexhaustible number of them left? “Maybe,” he concluded, “in the absence of any certainty, we should just assume that we’re going to live a long time. Maybe that’s the only way forward.”

The book also teaches us a lot about the real essence of life and death, and that is love. Those we love, and those who love us. It’s the theme I return to over and over again in the face of my own loss of my nine-year old daughter to a kidnapping that remains unsolved almost 29 years later. Once we understand the actual fact of loss, we understand what an act of outrageous courage it is to love. But at the same time we can see the beauty of love in a way we couldn’t before. During the course of his illness, Kalanithi and his wife decided to have a child together. The last words he penned here were for his daughter:

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Oh, what an ache in those words. His daughter will not know what she is missing, but here she will find it. But they capture the essence of love, and the essence of loss. I have though many times that I am not afraid to die. I know I cannot say that until I face death myself. But if there is a fear, if there is a reluctance, it is here. His joy is sated? Does not hunger for more? But how can that be? How can your heart not grasp at that joy, at that love, desire an ever-deepening infilling? How can you not be unwilling to stop, to ever let go?

The last part of the book was written by Kalanithi’s wife, Lucy, after his death. In many ways, this is my favorite part of the book. She wrote of Kalanithi’s purpose in writing this book: “He wanted to help people understand death and face their mortality…. ‘That’s what I’m aiming for, I think,'” she quotes him as saying, “‘Not the sensationalism of dying, and not exhortations to gather rosebuds, but: Here’s what lies up ahead on the road.'” Did he fulfill that purpose? Well, yes and no. I don’t think any of us can be prepared for this journey until we are on it ourselves. But it helps to know that others have gone through it before us, and have found courage along the way.

His wife spoke of their love. The marriage had been a bit rocky before the diagnosis. They were both medical interns with very stressful schedules. But they pulled together. She wrote, “At home in bed a few weeks before he died, I asked him, ‘Can you breathe okay with my head on your chest like this?’ His answer was, ‘It’s the only way I know how to breathe.'”

And she wrote of the impact of living with life and death.

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This is a special gift, honestly. For those of us who are living who have been touched by death, life assumes a different color and texture. We see it through the stained glass prism of having experienced loss and death. If there is a gift, an understanding, that I could pass on to my children, this would be it. I have two daughters who tell me I have to live forever, but regardless of when or where or how, I know I won’t. When I do leave, I want them to be strong. I don’t want to leave until they have all that they need in life to survive, and having that, I want them to be able to see through the best colors in the stained glass story of our love. It is possible to cave in the face of death and loss. It is possible to turn that prism into something dark, comprised of fear, anger, hurt. But in the natural course of events, that prism actually brings a new beauty to life. You know if a sunset lasted forever, you would not be drawn to it as you are. It is because you know it will be gone quickly that your desire is to soak it in, make it a part of yourself. In that way, its fleeting beauty will become eternal within your heart.

Lucy Kalanithi also spoke of her husband’s courage:

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This is where I think I fail. I do not cry. I did not cry when I was diagnosed. My youngest daughter was with me, and her eyes filled with tears, but mine didn’t. Somehow I think perhaps I am not fully alive, as Kalanithi was. Many years ago I told my therapist, “I feel dead inside.” “Well, how did you feel when you were feeling?” she asked. “Like hell,” I replied. “That’s what the problem is,” she told me. “When we feel bad enough for long enough, we shut down our feelings.”

It’s self defense. It’s helpful. When I had my mastectomy, a number of nerves were severed in the surgery. I still have numbness, and it bothers me just a little bit. Funny enough, places that are numb can itch, but then can’t feel the scratch. For the most part, however, I have been really grateful for it. My post operative pain was far less than I’d thought it would be, and I am sure this is why. “Can you please sever the nerves?” will be my standing request whenever facing surgery, and I will only be half joking. I don’t like pain. People are always telling me how brave I am, but it’s not true. If I was brave, I would be able to embrace the pain. I wouldn’t spend my life running from it. Before the day comes when I do die, my desire is to make that journey into the storm of love and grief in the center of my heart, and set it free. I want to do this for myself. I want to do this to fulfill my purposes here on earth. I want to do this for my children. I want to do this to teach my children the most important lessons in life:

How to live.
How to love.
How to let go.
How to die.

Life is horrendously fearful. Life is gloriously beautiful. It is not to be wasted. It is not to be squandered. It is not to be hidden under a rock. We need to let our spirits do what they want to do, and that is to shine. That way we will have a light when we wander through the dark places, for ourselves, and for others we may help guide. I am not pretending to be there. I am not pretending to have the answers. But what little I have, I will share.

On the inside cover of When Breath Becomes Air, I scribbled a couple of lines. Whether they came from the pages of this book or elsewhere I don’t remember. But for my friend, for each and every one of us, on one near or far day, I speak these words:

In peace may you leave the shore.
In love may you find the next.

Blessings to you all, my friends.

p.s. Just as I was publishing this blog, I received news that my friend had passed on. God bless you, Carla. I will miss you.

Lots of feels

One of my blogs is about to disappear, and in the interest of saving it I am coping some of my previous posts into this blog. This post was from July 6, 2015.

It is 6:30 in the morning on my day off work, and I am here, awake. I have a lot of feelings inside me and I am sitting here with tears in my throat and in my eyes, longing just to be able to write my feelings down and push them off into the world. Like the words from the Anna Nalick song, “2 a.m. and I’m still awake, writing a song. If I get it all down on paper it’s no longer inside of me, threatening the life it belongs to.” But maybe I just really don’t have the courage. One day I swear I am going to write my novel so I can say all the things I cannot say, turn loose all the feelings inside of me.Half of the feelings I feel are vapors in the wind anyway.

As I sat here at my desk, I watched a cloud outside my window. For a moment it was the stunningly clear face of a pitbull terrier. But in seconds it morphed, first into a kitty, and then on to several indistinct stages on its way to becoming the blank cloudbank that it is at this moment. And that happens so often with problems. You have a dagger in the heart, but then it dissolves and is gone, unless you happened to put it into writing or other communication where it becomes immortalized, or kind of. For me, writing and getting things out is cathartic, but the problem is that when you get things outside yourself sometimes they take up residence in others, and become things totally other, and totally beyond your control at all. Things that are minor can come to define you.The other thing about writing is that often it helps me to figure out just exactly what it is that is hurting. Like right now.

The immediate cause of my distress is that my daughter, who is 18 weeks pregnant, was experiencing anxiety this morning at 4-something. I woke up. Presumably she has gone to sleep and I am still awake. This anxiety, this problem, will probably dissolve when the winds shift. But in me it stirs something far deeper. Whether large or small, my child is suffering, and I am powerless to alleviate the suffering. I can, and do, talk my head off in an attempt to fix things, but honestly sometimes I know that just makes it worse. That’s the other dangerous thing about words. For some reason the same words can mean completely different things to other people. She is anxious, so in an attempt to alleviate the anxiety, I employ the analytical mode, trying to explain why the problem is not quite as bad as it feels, and/or how to avoid problems in the future. This works well for me, but my daughter is in emotional mode, and she absorbs those words completely differently, internalizes them as criticism, which they are not intended to be.Emotions. Sometimes you just have to get control of them.

I remember in the second year after Michaela was kidnapped, I just felt angry, and it finally dawned on me that my anger was nothing more than sorrow that I had turned inside out and thrown outside myself because that was easier than feeling the sorrow. That was a big thing. But the same thing happens with the little things. We feel pierced by that dagger, which would probably dissolve in a minute, an hour, a day, unless we let that sorrow become anger and let it out into the world where it will inevitably cause more hurt. I personally have counted the cost and decided it is not worth it. That means I end up with a lot of feelings that get bottled up inside. Perhaps I need to find another means to transform and express them, through something more positive than getting angry. There are a lot of things that never ever get resolved, because I don’t speak of them. In the end I guess I don’t trust that they would get resolved if I did.

This child, the one whose anxiety woke me in the early hours today, was born five years after Michaela was kidnapped. One of my strong memories is from when she was a little baby, and she was crying. I picked her up and held her and said, “It’s okay. Mommy is here. Mommy will take care of you.” I was reassuring her from my heart with every intention of making everything right, of keeping her safe and protected and not letting anything hurt her. But in that moment I was flooded with the knowledge of the truth, that this was a lie. It was a promise I could not make. I had said the same sort of thing to Michaela, but in the end I had not been able to protect her. She suffered the most brutal fear, grief and pain, and there was not a single goddamned frickin thing I was able to do to prevent that, or to save her from it once she was in its clutches. I completely and totally failed her.

And I have completely and totally failed all my children. It hasn’t been as dramatic as it has been with Michaela. The daggers that have pierced them have been the kind that mostly dissolve in time. But they have all suffered grief and sorrow, and there is not anything I can do about it. I have made midnight trips to the grocery store for chocolate, taken them for manicures, sat and listened, hugged and cried. But the only way I could actually have prevented my children from being hurt was if I had taught them not to love. Jobs, money, those things all can cause stress, but only love can pierce the heart, and it can pierce deep and hard and leave shards that don’t ever completely go away. I know, because I have them myself.

My daughter and her husband, they are happy and excited about the baby they are having. But they have feelings inside them that perhaps they don’t even understand. Do they understand the huge vulnerability they are being drawn into? They are both smart kids, and they are both very self-aware, smart, imaginative and creative, so maybe they do. Or maybe it is just a vague sense of unease. I know that as they have thought about their child, they have been drawn to look back on their own childhoods. In doing so, they have encountered the things that hurt them. They think, they hope, that these things will be different for their child, that their son won’t encounter the cruelty of other kids, for example. But somewhere deep inside, as they consider their own hurts, they may be coming to realize that those things are going to hurt even more if they happen to their child than they did when they happened to them. I looked it up this morning, that quote that I just kind of know. I discovered it has a source, author Elizabeth Stone. It is, “Making the decision to have a child — it is momentous. It is to decide forever to have your heart go walking around outside your body.”

Well, I guess I am kind of placing my own thing into other people’s minds here. I think it is valid to a point. But really it’s my own point. For me, it is magnified, because it triggers that deep sorrow of not being able to save Michaela from suffering. But the fact is, I can’t save any of my children. I can’t make any of them happy. I can’t protect any of them from hurt. I can just hope that they have the emotional wisdom to live well.

To you, Michaela, I just want to say that am so sorry that I was not able to protect you from harm, that I was not able to save you. Wherever you have been, whatever you have been through, I just hope that you have been able to feel always that love that is beyond life and death, there in your heart, forever.