Into the darkness

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For those of you who insist that I am so strong, so brave, yada yada, I thought it might be educational to tell you to what depths my soul can cower, and the relatively small things that can drive it there.

Like heat.

We have had a heatwave here in the San Francisco Bay Area over the last few days. For some reason my air conditioner thought this would be a good time to stop blowing cold air, and because it is a holiday weekend there is nobody who can fix it before Tuesday, or possibly before September 14th. Now anyone who knows me can tell you that I do not like heat. My maximum comfortable temperature is 72 degrees, with a breeze. So you would expect me to be uncomfortable in the unusual 110 degree weather we have been having. My bedroom, which I like to keep no warmer than 69, has been running between 85 and 90.

No surprise that I would have a negative reaction to this heat, but the kind of reaction I have had has been extreme, even for me. I sit in my room, and even with a fan blowing right on me, I feel as though there is just not enough air to breathe, and I descend into this dark claustrophobia. I fight against it by sleeping as much as I can (which is a lot actually), and by distracting myself. I was having trouble keeping track of the action on the TV show about the Irish Revolution I had started watching, so instead I thought it would be a lighthearted romp to watch a documentary about Timothy Leary and Ram Das and death. Now that really took me to some dark places.

I seem to have been thinking a lot about death lately anyway. I have picked up any number of books on the subject. I am reading two memoirs by Kara Tippetts on her journey through breast cancer and death. Somehow I came to be in possession of the Tibetan Book of Living and Dying and Preparing to Die by Holecek. I’d seen an upcoming seminar/webinar with Pema Chodron. The website didn’t say anything about the subject matter of the seminar, but these two books were listed as prerequisite reading so I picked them up, even though chances are slim I will attend the seminar or webinar.

Also in the last few weeks when I have experienced pain severe enough that it made me want to vomit, so persistent that I was unable to sleep. I have developed a new appreciation for those who say they would rather end their lives than live with their disease.

It’s all kind of challenging me, to tell you the truth. I have said for years, for always perhaps, that I am not afraid of dying. I have even said that I see it as a great adventure. But you know, maybe I am a bit afraid. In my brief perusal through Preparing to Die, it appears that Buddhism has some pretty specific ideas about what happens after death, and what you should do there. That surprised me, because I guess I’d always thought of Buddhism as being kind of non-religious. Well I guess that goes to show how much I know.

The God of the Bible, the Father of Jesus, now that’s another thing. I have spent a lot of my life pursuing him or being pursued by him. I had always thought of him as someone who loves me, but in recent years I have seen a lot more of the harsh, judgmental God when I read the Bible, and although I have a hard time believing in a God who is not far nicer than I am, the possibility has instilled some fear into me as well. This isn’t a serious, over-reaching fear, but it nibbles at the back of my mind. I have my own ideas about what happens after we die, but they really are my own ideas. Where they came from I don’t know, but who am I to have ideas? No one. Why would I listen to myself?

Then too there is just the physical part of dying. From all I hear, it is generally painful. I think my mother’s death, from emphysema, may be among the least painful, but it was replete with the other difficult aspect of death, the cutting off of breath, that thing that I have felt as a shadow over me in this heat.

Of course, I can never confine my suffering just to myself. So I have had to think about all those people who live in those unbearably hot countries with no air conditioning even to fix. I think about our young soldiers in the middle east in their monstrously hot uniforms. I think about all those people who suffer chronic pain. HOW DO THEY DO IT? I want to know. And people call me brave simply because I keep plodding along the course I have been given? Well I would not be doing that if my toe was broken, you know, and yet I have known high school students who ran cross country competitively with broken toes.

I am not strong. I am not brave. I’m really kind of an overly dramatic whiner. Anybody who tells you different has never met me!

Praying right now for a cool breeze, and more air. And an air conditioner repairman so this doesn’t happen again.

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.