Finding Life in a Fear of Death

I found today during a feared appointment with a new oncologist that, of course, I still have chronic leukemia. But I've got some time to consider options. Along the way, I also found some resources that provided me strength, well-being, even healing. 

They are: A doctor who respects me. 

"I respect your values and philosophies that may be different than mine. I want to work with you, even if we differ." Um, wow? I have spent 11 years with leukemia finding this doctor. She is the fifth in a long line, including doctors who have used scare tactics and half bits of information to try to convince me to do what they wanted me to do, rather than consider what I wanted. This is the challenge of the modern, fragmented life. We have to cut through many weeds to find our tribe, including a medical team that speaks our language when needed.

A supportive community. 

This includes not just my family, who frankly need their own support supporting me. This includes close friends. This includes lovely Facebook. I carried so much love with me into my appointment today, reading comments on my Facebook post, even as I waited for the doctor. I felt held and cherished even as I held and cherished my Facebook friends. This is the meaning of LIFE. If there is nothing else, this is what there ever needs to be. Presence.

Touchstones. 

In my pocket today I carried stones that said "truth," as in "I will speak mine" and "release," as in "I will release from my own defensive thinking and listen when my doctor is speaking." I also carried a silver piece that said "sisters" on it for my three sisters. I had my sweet stuffed "Lambie" in my bag, little pieces of things from my children and the meditation books that sustain my days.

My philosophy, my spirituality.

This is the the most challenging part, the piece to the puzzle I have been seeking my whole life. I come from a Catholic tradition that gave me mystery and a profound understanding of sacrifice. As an adult, I have studied the saints, the mystics, Jesus, the Buddha, the yogis, Merton, Hahn, Tao, Emerson, the Amish way of life and humanism, all of which/whom have provoked thought and reason along with mystery and tradition as I sought to find what I believe to be true. In particular, I was looking for what I believe to be the connector, the thin veil, the constant that reduces the duality between birth and death and instead equalizes both as simply parts of a continuum of human existence. For years, I struggled as I sought a spirituality that made sense to me. Not having this piece in place as I considered a life-threatening disease left me at times paralyzed with fear about the possible outcome of my condition and how I could openly move into a necessary exploration, and ultimately, peace, around mortality. 

Now, finally, I will step out onto a limb -- that some may want to break -- and say I believe it has been found.

It is within the psychology of the Buddha, coupled with the mystery of the unknown where I believe I have finally found my answer.

It is an answer I had been coming to by degrees, that I came upon most profoundly during a particularly dark night of the soul this weekend, after I had been through a grueling couple of days worried about the leukemia, the upcoming appointment and how poorly I was feeling.

After years of believing I could recover my health, I had gotten it in my head these past several days that I was doomed, that the only way out was the serious medication route. This is nuanced and personal. Unlike short-term cancer drugs, chronic leukemia drugs are experimental and ultimately deadly. You have to be on them the rest of your life. They carry serious side effects, including life-threatening infections and other unknown effects in the long-term. Doctors know they are problematic and wait for you to decide your situation is "bad enough" that you will chance taking them. Some doctors are pushier than others and impatient.

While I had been lucky for 11 years, for the past almost year, I had begun to suffer from severe anemia requiring blood transfusions and such profound fatigue that my quality of life was suffering. 

I thought this weekend I had two choices: I could take the drugs.

Or I could just go ahead and die.

This was a position I'd never been in before, as before, I had believed that by working with body, mind and spirit, I could heal myself. This was a slow-growing disease. I had time to work with the tools I had -- food, yoga, psychology, meditation, exercise, reiki, cranial-sacral, acupuncture -- to see what I could do on my own. As time went on, my condition had only very slowly progressed. I had even been able at times to stabilize it. But as each year moved on, so did my disease. I felt depleted at times, never sick enough to warrant medication. I just had too many white blood cells crowding out platelets and red blood cells and sometimes my spleen hurt, swollen as it was by so many aberrant cells. Certainly, too, I lived in fear, watching and waiting for my situation to worsen. This came to an existential head this past week as I felt so fatigued to the point that I imagined what it might feel like to die. This was making me afraid to go to this upcoming appointment. What would the doctor say? Would she start pushing for me to take the drugs? Was I, in fact, dying?

I lay in my bed, petrified, much of the weekend, finding new respect for what it must be like to be an acute cancer patient in this torturous space between hoping to live and feeling so bad you want to die. 

And then on Sunday morning, I attended the sangha (Buddhist community) zoom meeting that I often attend through the Bozeman Dharma Center in Montana.

Always at these meetings, first, the group meditates. And then we talk. The meditation this time was focused on taking refuge in the Three Treasures of Buddhism: the Buddha, the dharma (teachings) and the sangha (community). I didn't know what this all meant, but I sat, or rather I lay down, in meditation anyway. I fell asleep as I sometimes do.

It was after we meditated then that I learned what it means to take refuge. Taking refuge in the Buddha means believing you hold the Buddha inside you. Taking refuge in the dharma means holding to teachings and practice, for example, the eightfold path to enlightenment -- Be free from desire. Be satisfied. Be tranquil. Be diligent. Remember the teachings. Meditate. Practice wisdom. Avoid pointless talk. Taking refuge in the sangha means holding to your community, typically the community of others who study Buddha with you.

During our discussion, the story of Dogen was brought up. Dogen, I learned, was a Japanese Buddhist priest, writer, poet, philosopher, and founder of the Sōtō school of Zen in Japan. After our meeting, I found a feature film about Dogen.  

I spent all day Sunday doing nothing but making grape leaves for a zoom supper club with my sisters and watching the 150-minute movie. I learned the teachings of Dogen and watched slowly, over about eight hours that day, his life unfold. 

I also watched a depiction of his death. 

Dogen died, as he lived, sitting, meditating in community. 

It was this that touched me most profoundly and directly. To die as one lives is my great imagining, and yet, despite witnessing four deaths being close to many others as a hospice writer, I'd never been able to witness this. Now here was Dogen and this sangha, showing me.

This is the piece/peace I've been trying to lift between life and death: 

Goodness is inside me whether I am actively living or actively dying.

I can practice being a loving, compassionate person whether I'm on my deathbed or fully alive.

I can be part of a community dedicated to the same, at whatever moment in time or space.

The great teachers tell us it is only in the darkness that we find light. 

It is only in discovering death that we find life.

This new knowledge, this understanding of the continuation of growth and expansion even unto death and dying, is what I took with me to my appointment. 

This, along with stones, the love of friends and family, my voice, and a loving doctor with whom I actually enjoyed discussing options today, sustained me as I learned I am not at a critical point. I am not dying, only anemic with an ailing thyroid. I can keep on, my doctor said, working on the anemia and the thyroid, for an undetermined amount of time. She would rather I start treatment, but she understands why I don't want to yet, if ever.

In the meanwhile, regardless of whatever, no matter whatever, thanks to the illumination through the sangha and Dogen, I know I can always continue to grow and learn into vast and simple teachings that make sense to me.

It takes work to identify and then create what we want. 

My years of seeking have not been for naught.