After and Before Completion

Living through layered endings and beginnings, and not knowing.

You haven’t heard from me with any regularity in quite awhile. For that, I apologize. I have wanted to write, but I haven’t had much time, nor have I known quite what to say. Late last year, my daughter Raven’s care became my whole life. I tried to write, but found I couldn’t focus on anything else, couldn’t translate this deep experience into language. I managed to get out a handful of Prayers of the Week, and a few updates on Notes. Although I knew it was a bit silly to call the prayers “Prayers of the Week” when they were only going out once a month or so, I contented myself with the knowledge that your prayers were filling in the gaps.

In the fall of last year, I had built up quite a momentum in delivering posts about Hurricane Helene, her impact on my region of southern Appalachia, and the inspiring response of the community’s rescue and recovery efforts. But only a few weeks after this regional disaster came the family disaster.

In late November, I published a prayer request for my daughter, Raven, who had just embarked on the greatest struggle of her young life. At that time, all we knew was that Raven had a tumor in her chest wall and was very sick, suffering from pain and dropping weight rapidly, unable to eat much.

Shortly after that message, while we were awaiting test results and further scans to determine an exact diagnosis, her father and I took Raven to the emergency room due to intractable pain. She was admitted and hospitalized for thirty days. We received a diagnosis: Ewing’s sarcoma, a very rare type of malignant tumor that has no known cause, but is typically found in teenagers and young adults.

The tumor had already grown quite large, and was continuing to grow at a rapid rate. There were delays in getting a certain diagnosis, and by the time we got it, the tumor blocked almost all of her left lung. We had no time to deliberate about treatment options. The week of Christmas, Raven started chemo. Every fourteen days, we traveled 2.5 hours by car to spend two-to-five days in the cancer center. We’d return home for a week of respite, then we’d go back to the hospital.

Although the chemotherapy side effects were brutal—the nausea, the hair loss, the exhaustion—Raven was improving. Her appetite returned, and she gained weight. The pain gradually lessened. She was able to laugh and enjoy herself again. On days when she was feeling better, she played guitar, sang, and drew in her sketchbook. Scans showed the tumor was shrinking.

In May, radiation was added to the treatment plan, and Raven did 33 cycles, Monday through Friday. For almost two months, we lived out of a hotel. Chemo wasn’t stopped during radiation, and the two of them together produced some very worrisome side effects. Her appetite decreased again and she began to lose the weight she had worked so hard to put on. Her muscles weakened. She became unable to walk moderate distances without stopping for a rest, and then she was unable to walk very small distances and had to be prescribed a wheelchair.

Then there was a very close call. Raven’s radiation-induced esophagitis, which we’d been trying to manage with numbing medications and dietary adjustments, became so severe that a medical emergency required us to pause all treatment for a couple of weeks and necessitated a 10-day hospitalization. She was unable to eat anything but the bone broth I prepared for her from packets and hot water in the hospital room, adding MCT oil for extra calories. Raven’s weight fell to 89 pounds, lower than when she started chemo. A feeding tube was considered, but due to the risk involved in placing one in the esophagus and the time lag required to schedule a surgery to place one in her stomach, it was decided to forego the procedure. Fortunately, the danger passed. The brief pause in treatment allowed her to recover the last dregs of strength she would need to complete the journey.

Raven rang the bell on six weeks of radiation on July 17. Then on July 27, she rang her second bell, to commemorate the end of what was supposed to be six months—but turned out to be 7.5—of chemotherapy.

We finally came home and spent the next month resting and recuperating. Within two weeks of our return, she no longer needed a wheelchair. By the end of that first month home, she was eating a regular, healthy diet and gaining weight. Two weeks ago, she was able to go for a hike for the first time since last spring.

Last week, we returned to the cancer center for a final five days of radiation—this time to the pelvis, the only other site where the cancer had metastasized before it was caught and diagnosed. This was the official end of Raven’s treatment, so assuming her next scans, in late October, confirm the success of all the chemo and radiation, we are finished.

Early Friday morning, Raven rang her third and final bell. We hightailed it back home in time for an end-of-treatment party at a dear friend’s house, and the chance to swim one last time before fall.

I want you to know that Raven is a force for good in the world. Many of my prayers for her healing centered on this fact. It would be a net loss to creation for Raven to expire so young. The gifts God has bestowed on her are many, rich, and brilliant, and the ways in which she expresses them are simply magical. She is both a talented musician and songwriter, and a skilled visual artist. The songs she writes and performs frequently bring people to tears.

In 2024, Raven had wanted to begin selling her prints at cafe galleries and art markets in the coming year. We couldn’t do that because of her diagnosis, so she set up an art gallery in her hospital room during each round of chemotherapy, and she sold her prints to nurses and hospital staff. She gathered a bit of a following through word of mouth, with staff who’d never even met her stopping in to see the art.

And she continued to write and play her songs throughout treatment. When she was feeling up to it, she would play and sing during hospitalizations. On one occasion, she and her dad held a short concert in the room, which was attended by a nurse and two nursing assistants.

Raven makes friends and touches hearts wherever she goes. She is still in touch with one of her nurses and one of the hospital cleaning ladies, a couple of the staff from the family house where we stayed during her treatments, and various other people we met along the way.

Life has been upended, in many ways. In other ways, life has been set right. God sustained me throughout this journey. Through my daily prayers and journal reflections, I was given the nourishment and strength to go on. He spoke to me through my dreams, through scripture, through synchronicities, through the compassion and generosity of others. I had little scripture-inspired mantras I would repeat to myself when things seemed dark, when anxiety threatened to throw me off my balance:

He has made everything beautiful in its time.

The Lord has helped us so far.

Behold, it is very good.

During this journey I also picked up a new self-development method through consulting the I Ching. I feel that God led me to this practice as surely as he led me each morning to prayer. Say what you will about divination—I have found the advice of the I Ching to be insightful, divinely inspired, and precious to my growth. I plan to write more about it in the future.

If you don’t know anything about the I Ching, it’s an ancient Chinese method of divination. You ask a question and toss coins to receive your answer, which is expressed as a number that you then look up in the text. The I Ching never gives comprehensive answers about what is going to happen, and never tells us what to do. It’s not really about divining the future, but about learning to recognize the truth of the present moment, which helps us to make better choices in response to all possible seasons of life.

The I Ching is arranged in 64 hexagrams, which are thought to illustrate the progression of phases in an experience or undertaking. One of the most interesting things about the arrangement is the order in which it places the final two hexagrams. The last one can be translated as “Before Completion” or “Almost Across”. The second to last is “After Completion” or “Already Across.” Why are they flip-flopped? It’s a reminder that there are no neat endings in life, only layered beginnings and endings and middles, building upon and influencing one another.

So here we are, “Almost Across,” and at the same time, “Already Across” the deep water. I have learned so much from this journey. Lessons about trust. Lessons about acceptance. Lessons about dedication. Lessons about guilt and redemption. Lessons about inner truth, inner peace, inner sanctity. I expect it will take me a long time and many circuits around the spiral of integrating experience to pull it all out and express it in words.

For now it will suffice to simply be in gratitude. Gratitude for the gift of Raven, for the journey and the lessons, for being almost-and-already across, for the blessed goodness of every one of God’s flickering flames—including many of you, readers—who gave, who prayed, who cared for Raven in the hospital and at home, who loved us unreservedly and helped us along the path. And deepest gratitude for the miracles manifest in each brick of existence.

It is hard for me to imagine ever setting up my dwelling outside of the default state of gratitude, ever again. Though I know there will be future sorrows, stressors, struggles, and anxieties—there certainly will be future moments when other emotions temporarily supplant gratitude—I can’t imagine ever slipping for long out of the knowledge that a great goodness undergirds the whole operation of life. I say this even though we are still awaiting a declaration of remission, and even though I know it is possible for cancer to return. I say it with full acceptance of the risks and sacrifices inherent in living. In loving.

There are pits of despair, there are valleys of the shadow of death, there are hells in this world. I do not deny it. Still, it is very good. It is human nature to notice and hone in on the hell within and all around us, when the heaven is there in equal or even greater measure, beckoning us, inviting our participation. Plunged into darkness, the soul learns to embrace the light.

I don’t know what will happen. This is another important principle embedded in the I Ching, the principle of Not Knowing. There are many things we do not know; many things we are not meant to know, like what the future holds. Like the answers we are not ready to receive, even to questions that burn painfully in our hearts. It seems to be in the voluntary assent to what can be known—the nucleus of truth in each present moment—that we are able to develop and practice the art of being human. So I assent to these little truths, leaving all that I do not know at the feet of God. Following the flow of endings and beginnings and middles to the best of my ability, with innocence and trust.

Speaking of layered endings and beginnings and middles, I have been putting a lot of thought into what I’d like to do with the Substack in this next little phase of life. I have changed the publication name from the old, outgrown Dispatches from Dystopia to the new, fully fitting Starr of Appalachia.

I have given some time to planning a collection of content for October, all around the theme of New Beginnings. Because I don’t feel that only I, or only my family, is experiencing this weird activation point, sandwiched between “What has been” and “What may be.” When I scan the world stage, I see beautiful new beginnings taking root in preparation for the collapse of old, outgrown ways. Things are messy, painful, confusing and dark. The light doesn’t penetrate through the soil to the incubating seed, yet somehow the light is sensed, and the seed germinates.

And behold, it is very good!

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In Deepest Gratitude

To all you lovely friends and subscribers who prayed with us, and for us, who have helped financially in our time of need, and who have patiently borne with me in my Substack silence, thank you! We couldn’t have made it through the labyrinth without you. In case no one has told you today, your presence, here on this earth, in this precise timing, is significant and meaningful. May God bless you and your close ones, guiding you in growth and purpose.

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