Looking back

In the way of the digital world, this popped up in my computer, seemingly out of nowhere. It may have been the first post on my blog nine years ago! Since this is the weekend before Lent, I thought I would repost it:

Last year on the Sunday before Lent, we heard the prophet Isaiah proclaim that God is “doing something new.” Those words caught my attention. God was definitely doing something new in my life at the time.

My best friend Jim was living with me, and he was dying from brain cancer. As he and I looked ahead to Lent, we talked about what new God was doing. We were fairly certain Jim would die before Easter, and he was looking at Lent as his final journey to Jerusalem; he was on his way home to God.

I was walking by Jim’s side, and every day brought something new—new symptoms, new issues and new ways to know my inadequacies. I had no prior medical experience, and nothing in my life to that point prepared me for caring for someone with end-stage brain cancer. Every day I learned something new.

Every day also brought little joys as we learned to let go and trust God. Family and friends helped us in many ways—shopping, cooking, doing laundry and working in the garden to name a few. I had a deep appreciation for people who responded without hesitation to my calls for help and who gave selflessly. Their generosity touched me and affirmed my faith. 

Jim lived until the Tuesday of Holy Week and died at home and at peace. Since Jim’s death, I have continued to be aware that God is doing something new in my life. My old life is gone, and I am creating a new life.

I want to hold onto the lessons I learned during Jim’s illness and let them guide me into the next chapter of my life. I want to be open to whatever new God is doing in my life.

Joy

Like many people, my life seems to have become limited during the pandemic. I get together with family and friends less frequently and now am only going to restaurants and stores that require the staff to wear masks. I have spent lots more time alone, especially these past six months since my mom died.

One thing I have noticed during this increased alone-time, though, is how often I see silver linings and notice joy.

I am much more aware of the little things that make me smile—my lighted Christmas tree outside my picture window, every dog I meet on my daily walks, funny videos friends send. I seem to be more aware of how often I feel joy.

Perhaps joy was always there, but I was too busy and distracted to take note of it.

Now, though, with my life less cluttered with outside activities, I have the time, space and focus to notice the little things that make me happy. 

A reflection in Mark Nepo’s The Book of Awakening recently cited this quote:

Nepo went on to say that responding to need is a “way that scarcity can direct our lives,” and he encourages “finding what we love” in order to build a “life of passion.”

I have been pondering what brings me joy, what stirs my passion, what makes me come alive.

I think that at my heart, I am a caregiver, and I am quite happy when I can help someone. Also, by nature, I am a connector, and it brings me joy when I can bring together two people for their mutual benefit.

In the past, I have tended to diminish the little things I have been able to do, small ways I was able to help, but now I am more inclined to value the benefits of those little efforts. It is the starfish story of helping this one in front of me.

During the Solstice Gathering this week, Krista Tippett invited us to ponder the questions we are living. Here are some questions I am asking:

How do I live my best self?

How do I use what I have learned in life to help others?

How do I grow into the person God created me to be?

How do I let go of fear and grow in trust?

What questions are you asking? Where are you finding joy?

Transformation

“That must be so difficult,” people often say when they learn I work at a cancer support center.

“It can be,” I reply.

Every day, people tell us of their fears and anxieties, stories of their financial troubles because of the cost of medical care and the difficult decisions they face regarding treatment options.

Where can they get money to relieve their financial troubles? Should they continue with treatment knowing it is only prolonging life for a short time? Should they try an experimental treatment when traditional options have failed?

Dealing with vulnerability can be very challenging and even difficult.

But my work can also be very gratifying.

I get to see fears and anxieties melt away when people feel heard and their concerns validated. I am privileged to watch people support one another and see them move from fear to trust, from despair to hope. Every day, I see transformation.

During the nine months my friend Jim had brain cancer, I had a few “melt-downs,” moments when my patience ran out or my fears overwhelmed me. Sometimes I yelled. Other times, I collapsed in a heap and sobbed. Afterward, I felt guilty. Here was Jim, facing his death—and there I was, wallowing in self-pity. Remorse and shame engulfed me.

Then one day at the grocery store, I met my neighbor’s daughter who was caring for both her ill husband and aged mother. It must have been just after a melt-down, because I confessed my bad behavior. Delores waved me off. “It happens,” she said.

She went on to tell me how she, too, gets tired and frustrated, and how she, too, has been known to yell or cry.

“It’s normal,” She said. “Don’t be so hard on yourself.”

Before that encounter, I had felt like a terrible person, the only person in the world who would yell at a man dying from brain cancer. Talking with Delores, though, gave me a different perspective and helped me let go of the high expectations I had for myself.

I walked away from that encounter telling myself, “You are not Mother Teresa of Calcutta,” and then realizing that even Mother Teresa probably had melt-downs. We are all human.

The value of sharing our human fears and weaknesses is not restricted to cancer care.

I have also seen it when adults walked into the literacy center where I worked in Pennsylvania, feeling inadequate and shameful because of their lack of literacy skills—and then meeting other adults are in the same boat.

I experienced it the first time I attended a gathering of adult children of alcoholics and realized I was not alone, that others understood my experience because they had gone through something similar.

Once that understanding of a shared experience happens—whatever the experience—healing can begin.

Admitting my fear, confessing my shame or giving voice to my secret can be cathartic and can lead to greater compassion—for myself and for others.

When has that been true for you?

Wisdom from my dad

I grew up in a bacon-loving family. When I was seventeen, some scientist discovered a connection between bacon and cancer. I immediately announced I would no longer eat bacon. My dad replied, “You think you are not going to die because you stop eating bacon? No one gets out of this life alive. Eat the bacon.”

Less than a year after that conversation, a friend was killed in Vietnam. At Lonnie’s funeral, I recalled my dad’s words and understood that not only do we not get out of this life alive, but some die very young.

I decided to eat bacon—in moderation.

My dad’s pragmatism and Lonnie’s death helped me develop a realistic view toward life and death.  The cancer caregivers workshop I attended last month reminded me of my Dad’s admonition that “no one gets out of this life alive.” It also reminded me of the oncologist who treated Jim.

Jim’s oncologist was focused on what was best for Jim’s body—new treatments, a stay in the hospital, etc. Keeping Jim’s body alive was his priority, and he was frustrated when we would not do what he wanted. More than once, he warned that he would not continue to treat Jim if we did not go along with his directives.

He taught me the lesson that doctors treat.

Jim and I were more focused on Jim’s spirit. We knew Jim’s body was going to die—but that his spirit would live on. Our stance was that we are spirits inhabiting bodies rather than bodies that have spirits. We were more concerned that Jim’s spirit be at peace than keeping his body alive longer.

It was as if we were speaking two different languages. His oncologist could not understand why we would not try every possible treatment to keep Jim’s body alive—as if he did not know that Jim’s death was imminent.

The cancer caregivers workshop consisted of presentations followed by small group sessions. The presentations were given by doctors and other medical professionals who introduced a variety of mindfulness practices—breathing, movement, guided imagery, etc.—all within a medical context.

After working in adult education for ten years, I understand that adults learn best when instruction is contextualized. So, for medical people to understand new material, it is best to present it within a medical framework.I had lunch one day with a young doctor. He asked about my work and what I had learned from people facing cancer. I told him that I repeatedly hear that people don’t want to be told what they should, ought to or need to do. “I do that all the time,” he said. “And your patients probably don’t like it,” I replied. He looked stunned.

Perhaps it is time to reform medical training so that doctors and patients can speak the same language and be partners in care. Working together we can help people live healthier, fuller lives—while still understanding that no one gets out of this life alive.

 

 

Finding my voice

When I approached the presenter at the cancer caregivers workshop to share my reaction to her words about hope, she responded, “I wish you would have said that at the mic.”

At the end of each presentation, we were invited to come to the mic and ask questions or share reflections.

But, I don’t do that; I don’t share in front of groups.

Ironically, I love public speaking and have done a fair amount of it for my nonprofit work. But there is a difference between telling other people’s stories and sharing my personal stories. Other people’s, ok. My own, not so much.

As a child, I was told that what happened in our house stayed in our house. We also did not talk inside our house about anything that happened. I felt invisible, as if no one cared what I was going through—or even noticed that I was there. I didn’t seem to matter.
By my late twenties, I was an emotional mess and started going to therapy to help me process growing up in a chaotic house and to reconcile my past.

However, growing up in a home where I was told never to talk about what happened made sharing extremely stressful. Every time words formed about an experience or feeling, an alarm would sound inside my head. Do not say that!I was incapable of identifying what I was feeling, much less talking about it.

Early on in therapy, I shared one of my earliest memories.

I was four years old, playing in my back yard, when I found a dime. What luck! Even at that young age, I knew a dime could buy me something special. I remember how shiny it was and how fortunate I felt. And then my older brother saw what I had and claimed it was his. “No!” I shouted. “It’s mine!” He tried to take it from me, and I knew he would triumph, so I swallowed it.

My therapist commented, “And you have been swallowing every challenge since them.”

I once heard Fr. Richard Rohr talk about our shadow side, and he described it as a sack where we stuff all the negative things from our lives. The image that popped into my mind was of something like Santa’s bag—this huge sack, dragging behind me. I could feel the weight of it pulling me back.

My shadow bag was filled with twenty-eight years of negative experiences that I had swallowed and tamped down deeper and deeper.

As I began to unpack my shadow bag in therapy and at retreats, and look at my history, I started to realize that surviving those experiences had made me who I was; they had made me strong and resilient. Learning to talk about it—especially at the mic—is still a work in progress.

 

 

Hope transformed

Spirituality was the topic of one of the presentations at the recent cancer caregivers workshop I attended. About two-thirds of the way through her talk, the speaker told the story of a family member who had been in treatment for cancer. When the doctor told them there were no more treatment options, the presenter said, “We gave up hope.”

Gave up hope? How could they give up hope? Without hope, we despair.Her words were so jarring to me that I had difficulty listening to the rest of her talk. I wanted to stand up and shout, “Go back to that part about giving up hope.” But I didn’t.

Instead, after the talk, I composed my thoughts and shared with her how upsetting her words had been to me.

I suggested that hope is not restricted to life versus death, that it is not a one and done kind of thing. Hope can be transformed; it is malleable, adaptable.

I told her that when my friend Jim was diagnosed with a very aggressive, non-curable brain cancer, I had no hope he would survive it and accepted that he was going to die. His neurosurgeon was quite clear and definitive—short of a miracle, there was no way that Jim would survive Glioblastoma.

Some people grabbed onto that hope of a miracle and were convinced Jim would be miraculously cured.

I chose to accept the neurosurgeon’s prognosis; I am actually better when I accept the reality of a situation. Ambiguity and abstraction can make me anxious; facts steady me.

If a miracle had happened, I would have been absolutely ok with that; but, in the face of scientific fact, my hope went in a different direction.

I hoped Jim would survive surgery and live long enough to understand what was happening to him. I hoped he would have the strength and grace to accept his condition and to make peace with himself and God. I hoped he would be able to look back on his life with gratitude. I hoped that he would die peacefully.

I also hoped that I would be able to step up to the challenge of caring for him and helping him to live out the rest of his life as fully as possible. I hoped I would see God’s invitation to me and be able to respond.

I believe that in the cancer journey, hope must be transformed—again and again—to meet the challenges of the roller coaster ride of cancer. Giving up hope means giving in to despair.

Correlating hope with cure can put so much focus on the future that the present is overlooked. All of the goodness and blessings that are happening right now can go unnoticed.

For me, accepting the reality of Jim’s situation helped me to focus on the present and live in the moment. I knew every day might have been his last, and so I tried to make every day our best.

Death is inevitable; hope brings life.

 

 

Aware of emotions

One of the sessions I attended at the Center for Mind Body Medicine’s Cancer Caregivers training was called Mobilizing, Transforming and Celebrating Emotions. The presenter talked about the need to be aware of our emotions and to express them through movement, drawing, writing, etc. He talked about catharsis and coming into balance.

The presentation was followed by a small-group session where we were led through a guided reflection to help us become more aware of an emotion that was affecting us. We then expressed our awareness through a seven-minute writing exercise—a dialog with that emotion.

Anxiety was the emotion that presented itself to me both during the presentation and again during the guided reflection. The group leader suggested some questions to bring greater awareness of situations we experienced the emotion and ways it was impacting our lives.My dialog with anxiety went like this:

Me: Where do you come from? What do you want? What can I do to lessen your impact on me?

Anxiety: Lessen my impact? Who said you need to lessen my impact or that I want to move out of your life?

Me: I want you gone—or at least I want you to be less powerful and have less control in my life. I want to be at peace, not to have my stomach clench when I am asked a question or when an emotion arises. I want to be able to live in joy and not guilt, to be confident and not second-guess myself, to trust my experiences of affirmation. I want to be proud of my accomplishments and to believe in my capabilities.

I think—I believe—that I can only be free to what “new” God is doing in my life, to actually trust it and embrace it if my anxiety lessens.

Coming to this workshop, I can see how much my anxiety has lessened by what I share—and I can see how much anxiety I still have.Anxiety: Perhaps that is the secret—trust and celebrate every, single time you push against me; every time you move against your resistance and fear. Take it in, Jim used to tell you. So, I say it, too. Take it in. I am part of your ancient history. You are not that little girl any more. You can protect yourself. You know what you need to be safe and free. Do that.