Looking into the eyes of courage: A life-changing reunion

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An intimate moment between Trish and Hakan, who traveled from Sweden

It’s not very compelling to read that I was indifferent about going somewhere.

My journalism professors would call this a “bad lead.” No hook to draw the reader in. “Indifferent” isn’t exactly a power word, more of a lame adjective where a good verb would coax the reader along.

But it fits. I’ve been a flimsy cliche. I recently agreed to go to a reunion but with the qualifier that “I’m not really a reunion sort of guy.” Like those people who boast that they don’t watch “Game of Thrones,” do I somehow think this makes me superior?

What it makes me is insufferable. And full of shit. Some friends from an adventure more than three decades ago showed me that.

I am a member of Up With People Cast C ’86 and we aren’t an indifferent group. One of our own is enduring a decade of suffering that should break the spirit. Instead, she has transformed it into spirited poetry, a lyrical lesson in whole-heartedness. Trish Wilson-Geyling and her family lost their youngest member, 8-year-old Rudy, in July 2017. He died suddenly from a congenital heart syndrome. Before he was born doctors said Rudy would not survive without utmost medical intervention. In a blog called “Rudy’s Beat” Trish chronicled the joy and exhaustion, beauty and terror, adventure and mystery of her family’s short time with the buoyant little boy who possessed the same bottomless supply of smiles as his mother.

 

 

The words of Trish and her husband Rolf invited us in as they savored every moment, every smile, every tear, every overwhelming fear. They asked for our prayers when holding on to hope demanded more hands. Trish’s writing expressed the heaviness of fragile hope, but it never outweighed mindfulness, faith and gratitude. Upon Rudy’s death Trish wrote, “The doctors would have counted it a victory to have him home for six weeks. We had him home for eight years.”

Two months after Rudy’s death, before they had time to unpack their grief, life ambushed the family again. Trish was diagnosed with ALS, the progressive and incurable attack on the body commonly known as Lou Gehrig’s Disease.

I gasped “Jesus!” when I heard. It was up to him if he took it as a prayer or a reprimand. What more could one family endure?

Although leveled by the news, Trish kept writing Rudy’s Beat, digging deep to balance twice the grief with her singular presence in the moment. As always, her posts were packed with photos of a family clearly in love with one another.

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Trish and her son Max

Updates on her treatment were stirred in with tales of daily life, celebrations, kids starting school and memories of Rudy. And gratitude, always gratitude. As the ALS progressed, word spread across social media. It was time for a reunion. More than fifty of us would meet in Santa Barbara for “TrishFest!” The rest of our cast would show up on FaceTime and cell phone speakers. Our mission was to be there for Trish, but I don’t think anyone was surprised that it was Trish who ended up being there for us.

I mistook cynicism for wisdom, or for keeping it real, when it was simply a disguise for insecurities. My take-it-or-leave-it coolness about attending the reunion was camouflage for the self-centered silliness of the 19-year-old in 1986. A reunion is a good place if you’re not careful to compare your insides to everyone else’s outsides.

However, I forgot a few things. My fellow cast members are among the kindest people I know, and it was ridiculous to think my dark thoughts would not be extinguished by the brightest smile in our cast, still at full power and untouched by illness.8C178468-E589-4FB2-98E6-722EE99F5FEA

When we returned from our year with Up With People we learned that our experience was inexplicable. Even those closest to us stared blankly, like we were telling them about a dream we had the night before. We were a 100 kids between 18 and 25 from more than 30 nations and states, who traveled the world performing music and dancing for crowds, even though many of us weren’t that talented at either. However, some were so gifted they made the rest of us better. We were our own roadies, merchandisers and PR. We lived with families in each town we visited, even if we didn’t speak the same language. All of this was a wedge. It opened our way into communities for the real work. Cast members served at schools and nursing homes and homeless shelters and soup kitchens. We visited prisoners and addicts, and felt the grace of people who were ill, stigmatized, disabled and dying.

One of our greatest accomplishments was showing people everywhere we went that a bunch of kids from different backgrounds, cultures, and nationalities, saturated in hormones and without the benefit of fully connected frontal cortexes, could get along and do some good.

Mostly, we learned to show up.

It is not hyperbole to say that TrishFest was life-changing.

My oldest daughter Annie came with us to the reunion and her sister Emily surprised us, showing up from Missouri. They finally experienced the rowdy hospitality of Cast C. Emily hung out with the cast drummer for whom she was named, and Annie mingled like she had traveled with us.

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Emily and Emily

After so much time apart our cast hugged like linebackers. Happy anxiety charged the air with impatient affection. The laughter was pyrotechnic. Trish entered in her wheelchair with a smile that I could swear made the lights flicker, and turned a rented house into a sanctuary where we could be both riotous and reflective. She liberated us to unleash the power of our vulnerability, to carve away all the emotional callouses of middle age.

Quiet conversations in corners, home-cooked food prepared by our children, raucous tequila shots on the patio, jam sessions with Trish and Rolf’s astounding children. Stories that justified gray hair, wrinkles and wisdom. One friend recalled that there were a few times on tour that he wanted to kick my ass; I grinned and nodded. “I remember, and you should have done it.”

We went to church with Trish and longed to have her faith.

 

 

 

 

 

 

We were a cast known in our day as trouble-makers. Sometimes it seemed like the rules were a disobedience to-do list. What we were doing was too important to be taken seriously. Last week we were almost as unrefined, crowded into a house, as we were long ago, cramped on a bus.

We surrounded Trish with stories, songs, photographs and prayers. We looked into the eyes of courage and felt braver for it.

Trish wrote that she wished Rudy didn’t have to live with such frailty and lamented that he left them so soon. She wished she didn’t have ALS and that her family didn’t have to walk through it with her. Her family has a deep capacity to love, she said, but of course that comes with a deep capacity to feel pain. It comforts her, though, that life has become “second nature” to them because of what they have come through. They have gained a certain “expertise.” She calls it “Rudy’s legacy.”

Being with Trish broke us open and renewed us. Her presence in our lives, even from great distances, is a gentle challenge to stay broken. Remain vulnerable. Don’t let the protective callouses grow back. Don’t allow fear to rule us.

Our “official” reunion is in two years. As she left, Trish beamed through exhaustion, and said “maybe I’ll be there to see you.”

I plan on showing up.

Check out Rudy’s Beat: https://rudysbeat.com/

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Celebrating a friend with too many birthdays to count

Happy belly-button day, Carol.

It dawned on me early this morning that this old recovery expression is necessary for a life like yours. The day you came into the world is a birthday, but one of too many to count.

Your life was an expanse of birthdays that surprised like the painted skies at sunset that captured your imagination.85814E1B-243E-41C6-A6AA-C0F238A1928D-2682-0000048BFA8DC5E8

When you braved that first day of kindergarten and realized it would all be OK. The day you met your best friend and became so inseparable that for the next 15 years you moved as one, like starlings in flight. The slumber parties, first crushes, sneaking out at night, sticking up for each other when boys were mean. Every time you discovered something new in yourself, whether strength, or joy or pain, was a birth — or perhaps I should say re-birth.

You were reborn on the day you became a mother — each time — devoted Lauren, adventurous Jack, stalwart Lexy.

A new light shone each time you bragged about “the monkeys” or told the story of some misadventure, or worried about them– each time they crossed your heart.

When you planned their birthday parties it was up for debate who anticipated the events more, your children or you, with your detailed plans and child-like impatience to unwrap their happiness.

You had a gift for making each experience feel like the first time: when you sought your parents’ advice, confided in your sister, reunited with sorority sisters, or picked up a friend at the airport after months apart. Every time you said, “I love you” it was new.

You were born again when you discovered wit and humor and laughter and their healing power.

I recall the night when we kicked back and stared up at the stars on the old Arkoe road. Mind you, we were looking through the windshield of my parents’ station wagon, which you had crashed backward into a ditch after a 360 degree spin on ice. We landed with the front end jutting straight toward the sky like a rocket ship awaiting launch. You sobbed, “Oh my God, Oh my God, Oh my God!” But we both giggled when I said, “Hey, look, there’s the Big Dipper.”

Over the years we would laugh our way through worse predicaments.

You were renewed every time you laughed–and when you made all of us laugh.

Especially your capacity for finding humor in dark places, when you didn’t know if you could go on. The laughter that brought moments, days, weeks of healing, helping you loosen your grip on a life that demanded more from you than was fair.

There were sobriety birthdays when you found reprieve, and a deeper kindness. The first day you asked  for help was a new beginning as was each moment of grace that followed. And those courageous re-birthdays when you shouldered massive decisions to stand up for yourself and start over.

The times when life abused you and knocked you down were relentless, but you were reborn, sustained mostly by a love that was more relentless–for your children, your parents, your sister, all the people blessed by your playful, generous spirit.

Today is the first time that we celebrate the anniversary of your birth since you were taken from us. A band of your high school classmates are gathering to celebrate the day and all those unmarked moments that created you. Facebook posts are calling out to you. Phone lines are connecting your friends.

However, we haven’t seen your last birthday. They will continue to come too fast to count.

When your children remember a surprise party or an adventure with a mom who never forgot what it was like to be a teenager, you will take on new life. When someone shares a piece of advice from you, hard-won wisdom, it will be like lighting a candle. Even now as we grieve, you are vivid and alive in the tears and smiles, in the way we miss you. We long for the celebration we experienced when we were with you.

You came alive last week when I told the story of how loud you screamed when I donned a ski mask and tapped on your car window with an axe after a night watching horror movies. And again when your friend shared with me your last breakfast together, what she had learned from you and how you held your mother’s hand in your final days at the hospital.  When your friends gather and inevitably remember a night on the town, or a Royals game, or a simple “no hair, no shower” breakfast between two friends, there will be more reasons to celebrate your endless births.

Happy belly-button day, for now, my friend. Until you are born again tomorrow.

 

 

Anne Lomott: What to make of God

Let’s settle this God thing once and for all.lamott_rect-620x412

God, or no God?

Who on earth knows?

Any proof, either way?

None, except for Bach, foxes, forgiveness, elephants, bulbs and my dog Lily, may she rest in peace. Also, the fact that someone like me could have 28 years without alcohol or the non-habit-forming marijuana I smoked on a daily basis for 15 years. Also, ripe peaches, books, and Mr. Rogers.

There is Infinite good and beauty and heroism and artistic genius everywhere we look. Is this proof of God?

No, because there is also infinite evil and madness. I am not going to name names.

What do we even mean when we use the word “God?”

For the sake of argument, let’s say we mean a Higher Power–a power greater than our thinky thoughts, good ideas, grudges, positions and opinions: a divine Mind, a benevolent intelligence of some sort, some kind of bankable Love energy. Something that hears us and cares, when we cry out in our pain and mortification. I also like the Deteriorata’s definition of God as the Cosmic Muffin.

But what if the most illustrious atheists and agnostics hear that we actually believe this?

It’s none of your business what they think. To plagiarize from my book, it is like worrying about some guy wandering around the Mojave in a wet suit, reciting the poetry of Edgar A. Guest. People get to think and believe what they think and believe. You will never change them, or they us. Surrender: lay your weapons down. Let me make you a nice cup of tea.

What if they say you are ignorant, and a danger, in public?

It would have nothing to do with you. Maybe they are having trouble at work, or a spastic colon.

So do you actually believe that the soul is eternal? That death is just the end of dying, not of life?

Yes. Also, that there is a dessert section in heaven, and that it in fact makes up most of heaven, except for the ponds, and gift shop.

But we still die, correct?

Of course, and the question we ask ourselves, is, How do we live in the face of that? How alive are we willing to be? Why do we keep hitting the snooze button? What will it take for us to stop squandering our time?

Well? What’s the answer? What does it take to get serious about this life we’ve been given, even if we don’t know if God gave it to us, or chance?

Usually either a terminal illness or a DUI.

Is it legal to believe in evolution and all aspects of modern physics, yet also believe in a personal god, a Beloved, a sacred dimension to our lives?

Yes, in some states.

I shared this without consent of Ms. Lomotte, but she’s a really cool woman so I hope she won’t mind. And it’s easier to ask forgiveness than permission.

The Flinch: Startled by your forever absence

I am startled

It’s the same jolt I would feel if you snuck up behind me.

It’s not your sudden presence that makes me flinch, but the absence, forever absence

IMG_0728Grief isn’t overcoming me in waves, leaving moments between surges to gasp for air

Like some warped science experiment, it’s forcing me to relive the shock. Im afraid to breathe

Again and again I hear the sudden news that you are gone — forever.

You passed away, you transcended, you’re with God now

Comforting words, they feel like a trick, setting me up for the next bolt of pain

You are dead. I say the words out loud and fumble for acceptance, while my hand longs for the phone

I need to talk to you; we weren’t finished,  not even close

I love you, I’m  proud of you, you don’t have to be afraid,  be kind to yourself, you made me a better person, we can work anything out

The flinch snaps my head back; a sharp pain travels from my eyes through my face into my shoulders and chest. It leaves me nauseous.

I’ve lost you again

I would much prefer the waves

 

 

 

 

 

 

Ladies and gentlemen, the amazing and still undefeated Edna Schafer

“When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy. When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.”
Khalil Gibran

Edna Schafer didn’t so much battle cancer. She proved that love and joy outshine it.

My Aunt Edna, who died last week, had known much pain and grief in her 76 years of life. The mother of seven  children, she and husband, Bob, a rough-talking farmer, earned reverence in the eyes of their family and neighbors for their hard work, integrity and kindness.   As years passed respect has only grown for a family and its country matriarch who have endured unimaginable grief with grace and acceptance.

“Life is suffering” — The First Noble Truth, The Buddha

I doubt that Aunt Edna ever read the teachings of the Buddha, but she instinctively understood this truth. The Buddha wanted his followers to understand that the moment is all we have. To worry about future suffering or past regrets was of no use. Edna knew suffering, but she seemed to know that it was out of her control. As Catholic writer Henry Nouwen wrote: “Joy doesn’t simply happen to us. We have to choose joy and keep choosing it every day.”

10616522_559580804168395_7308452202808705634_nWhen cancer was discovered in Edna ‘s bladder four years ago, few doubted that this indestructible woman would beat it. A year later doctors removed her kidney. Posts on a Facebook page called “Edna’s Posse” remained as optimistic as  ever. In the middle of chemotherapy treatments Edna suffered a heart attack. She joked about her bad luck and was always the first one to laugh.

She never wavered from hospitality. Edna nurtured her children, grandchildren, nieces and nephews. She seemed ageless as doctors injected needles of chemotherapy and constantly checked her blood. When she underwent triple bypass surgery she found it more ironic than crushing. Even in the hardest of times guests to her house were offered cookies, ice cream or a big spread of home cooking.

A favorite memory of nieces and nephews was wrapping up in blankets and sleeping bags for overnights on the living room floor of the big old farmhouse straight out of rural mythology. If we weren’t all old now we’d still be camping out at Edna’s.

One of the first times I ever got drunk, my cousins brought me back to pass out on the Schafer fold-out couch. I feared disapproval the next day at lunch, but only got the infectious  laugh from my aunt. She ribbed me later at family reunions for refusing her fresh strawberries that day as I struggled through a strawberry schnapps hangover.

The Schafer family’s suffering was like a chapter from the Book of Job. When doctors discovered a tumor on the trachea of Bob and Edna’s youngest daughter Anita, a kindergartener at the time, she was given 6 to 9 months to live. She lived eight years symptom free.  In 1981, Anita would be unexpectedly diagnosed with brain tumors.  She would spend much of the next year and a half in hospitals as doctors tried to save her. The countryside wept with the Schafers when Anita died two days before her 14th birthday.

A few years  later, the family suddenly lost Bob in the fall to a blood clot following back surgery. He was a strapping 58.  A community again grieved with a devastated family as they gathered to help the Schafer’s bring in the crops. Only a year later doctors discovered that Edna’s oldest son, Mike, had a brain tumor. Despite aggressive treatment, he died a year and a half later at age 33, leaving behind a wife and young daughter

Author Anthon St. Maarten wrote: “If we never experience the chill of a dark winter, it is very unlikely that we will ever cherish the warmth of a bright summer’s day.”

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The Schafer family gathered around their mom, front and center.

There were whispers that this family seemed cursed when in fact they were blessed. Rather than break apart in the shadow of grief, they gathered around their mother and thrived. Laughter was a constant in a family of good humor. Affection was sown in a family that knew great loss. My brother and I often noted that the Schafers always had the  best turnout at family reunions.

Rather than feeling forsaken, Edna never missed Sunday Mass. She not only refused to judge, but loved those who chose another path, including those in her family.  She seemed puzzled by anger or people who held grudges. She knew that sudden loss and sudden joy could come upon us at any moment. When my aunt died I remembered the words of Khalil Gibran: “Some of you say ‘Joy is greater than sorrow,’ and others say, ‘Nay, sorrow is the greater.’ But I say unto you, they are inseparable.”

Of course there were lines of sorrow in Aunt Edna’s face. But they were inseparable from the lines of laughter.

Eventually the cancer spread to Edna’s liver, lymph nodes and abdominal wall. Weakened in the last year of life, she still traveled with her daughter Lori to Maine. Then in August she made the long journey to Idaho to see her granddaughter  married.

“I think that’s what she was living for,” her daughter Sharon said. “At the wedding dance we kept asking if she was tired, if she wanted to go home, but she stayed until the last dog was dead.”

Two weeks later, doctors said they had exhausted all treatment options. Edna shrugged her shoulders and said, “Well, we gotta do what we gotta do.”

“I don’t think of all the misery, but of the beauty that still remains.”
Anne Frank, The Diary of a Young Girl

Edna returned home. Hospice came to keep her comfortable in her final days. But I believe a life well lived was her greatest comfort.

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Edna shares a laugh with her grandsons, Garrett (left) and Ethan.

“I think Mom knew she was going to die from the beginning, but she was protecting us,” Sharon said.

People were always drawn to Edna. Not for great words or great deeds, but rather for simple acts of kindness and her ability to find joy through trials that many feared would break them. She knitted scarfs, and eagerly gave them to her grandchildren or any children who came to visit. Every time  I talked with her, the first thing she said was, “Come see me.” On one of my  visits back to Missouri Edna opened her house to my children and me to spend a weekend together. She immediately became Aunt Edna to them as well.

In her final hours people filed through her house to say their goodbyes and more goodbyes were said in a crowded church at her funeral.

On the day of Edna’s funeral I saw a passage from The Art of Mending, by Elizabeth Berg, that caught in my chest:

“There are random moments – tossing a salad, coming up the driveway to the house, ironing the seams flat on a quilt square, standing at the kitchen window and looking out at the delphiniums, hearing a burst of laughter from one of my children’s rooms – when I feel a wavelike rush of joy. This is my true religion: arbitrary moments of nearly painful happiness for a life I feel privileged to lead.”

Edna grieved deeply. Then scattered joy like seeds on rich soil.

She  taught those who knew her that life is suffering. But we are meant for joy.

It is our choice.