cancer, children, family, Life in General

The Honor of Weeping.

 

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My very special friend, Daniella.

For many years I have been one of the directors of a charity that assists pediatric cancer patients and their families. In that time I have learned so much about myself, suffering, kindness, courage, life, and most importantly death. I cannot now look at a child and not imagine the possibility that they might not make it to adulthood, or even their teens. It infuses every experience with the radiant reminder of true importance, a glowing reminder of the moment most precious, this moment.

There are so many memories that stand out. The director of the charity had already lost her own child, and yet she had the courage to face this unthinkable journey with others, again and again. But then came the call, she needed to talk, to weep, another of our kids was dying, and she just couldn’t fathom it. She wept, and then went on to hold other mothers’ hands and help them through the journey. Again and again. I stand in awe.

I remember walking down the halls of City of Hope and hearing screaming, I remember one of the nurses, while we were there decorating the ward for the holidays, exclaim, “I hate Christmas! So many kids die.” Because, she went on to explain, the terminally ill have a tendency to hold out for a special date, maybe a birthday, maybe Christmas, but then they let go. The nurses can do nothing but try to comfort, ease pain, hug family that are enduring the unthinkable in a constant state of shock. And when it’s over, they get back to work, clearing away the evidence of a loved patient who they may have known for years, and the room their lives once occupied returns to empty, until the next child comes to fill it. They return to work and start all over again. I stand in awe.

The Pajama Party, which we hold every year, patients, current and alumni, are invited. Each patient and their siblings receive pajamas, slippers, and many other fun gifts. Hundreds of people attend. We have a dinner, a raffle, games for the kids, and then Santa! My favorite doctor greets and embraces family after family with a huge smile and genuine joy, often remembering a child who is no longer with us by sharing a moment with the parents who lost them. I stand in awe.

When it became clear that a 12 year old who loved photography that we worked with was not going to make it, the doctors and nurses organized an art show for him. His lovely photos were displayed and sold to help his family with the horrific bills that would be all they were left with after they buried their child. My favorite photo was a shot down a city street with the sunset in the distance, he called it, “A Door to Heaven.” I remember standing next to the doctor as he talked to the young artist, who had received a huge platelet donation that day so that he could get out of bed and attend this event. They joked about him enjoying his cocktails. I stand in awe.

I remember one funeral, for a boy of eighteen, who we had been assisting since he was nine. He had lost an arm in the long hard process but he was the best hugger I ever met. He also had an amazing voice and he sang Wind Beneath my Wings at one of our fundraisers when he was only 11, not a dry eye. I remember his friends carrying his casket, the stunned loss on their still too young faces. When they sealed the casket at the gravesite, his mother, whose entire life for nine years had been caring for her gravely ill son, kept on straightening the drape on the casket as gently as if it had been a blanket she was tucking around him to keep him warm. The gesture was so intimate and it was so strange to me that such a large crowd of mourners were watching, that I turned away and looked to the sky to give her a sliver of privacy, though I doubt she even knew or cared for anything in that moment. That last, horrible, powerless moment when she could do no more. I will never forget the sound that she made, it wasn’t a cry, or a sob, it was from her very soul. It was a long, drawn out sound that rose and fell and vibrated the air around her. Keening. That sound is part of who I am now, I hear it when I think of these families and what they have endured. I stand it awe.

And then there are the children themselves, to a one they were the bravest, most accepting souls I have ever met. It’s as though they were finished with being mortal, they didn’t ‘need’ to be here any more, it was time for them to move on to the next stage. To a one they taught everyone around them what was true and important. To a one they offered a sense of perspective. I stand in awe.

Which brings me to the reason we began the charity. Desi. This girl, who at nine was diagnosed with a cancer so severe that the doctors gave her a five percent chance of surviving a couple of months, lived two years. In those two years, she got well enough to do many things, including going horse back riding with me, something I had promised her when she was very ill. This child, this exceptional human being, never lost her faith or her courage. Multiple times when we thought it was the end, she fought her way back, and she never missed a chance for a laugh. When a child is at the end, they are attached to machinery that counts their breaths per minute, and when it goes to zero and stays there, that’s pretty much it. So there she was, with her loved ones around her, watching the monitor, praying, comforting each other, when the monitor went from 5 to 2 to 0. They all leaned in, watching to see if this was it, after so much suffering if it was time for her to go home. No one breathed, everyone was drawn toward the bed, curling physically downward to be close to her, waiting, when suddenly, Desi’s eyes flickered, and she very weakly, but distinctly, formed an o with her mouth, and said, “Boo!” Everyone straightened up, laughing and relieved, she actually pulled through that time. I stand in awe.

But it was a short reprieve, and she was back in the hospital a few weeks later. When she finally, quietly, slipped away, only her mother was in the room with her. She told me that she knew that her daughter had died, but she didn’t call the nurses, she didn’t leave or reach out, she just sat quietly beside her daughter’s body and waited, thankful for the time she had with her, she told me that the thing she felt the most, was honor. She said she was honored to have been Desi’s mother. I stand in awe.

I still am a part of this charity, though now that I am not living in Los Angeles, I cannot take part in the active service as often as I would like, though every time I return to LA, I make it a point to go to City of Hope and donate blood and platelets, and visit with some of my friends there. I hope to find another place to fill where there is need when I settle wherever I may land, but my life is irrevocably changed already, my sense of perspective has forever changed. Things I once thought important are now laughable to me. My own children, who often accompanied me to events and the hospital to visit with the kids or help decorate for holidays, are markedly better people because of their experiences there. We are endlessly grateful to those children and those families, they have given us the gift of perspective that softens life somehow, makes the little things easier to bear, to release, to set free. I am not afraid to die, what better gift could I ever receive?

And sometimes I weep, just to think of them. Sometimes I smile when I recall their courage, and always I respect and admire the people who lost and lived to love and give back, almost every one of them turn to helping others in some form. I think of the remarkable human beings who care for these children every day, again and again, and never lose their ability to grieve each devastating death. Doctors and nurses who weep for the loss of every child they have cared about, and for, sometimes for years. I stand in awe.

Mostly, I remember the things I’ve learned so completely, that they are a part of who I am now.

That beauty can be found in a ravaged face. That love never dies. That your heart can be torn from your body and you can be glad to have had the capacity to feel that much, because the choice to not would have meant that you would never have have had that someone in your life at all.

I weep often, but not forever.

I care more fully, now.

I judge less, and look closer.

You never really know someone else’s story.

Especially the end.

You don’t know what might shatter your heart.

You might not yet know that you can survive it.

You can live to feel only honor.

You can make a difference for someone else.

I stand in awe.

Won’t you join me?

 

Shari, November 9th, 2017

America, authors, creative inspiration, Life in General

Shouting Out of Cars

 

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I’ve been in Santa Cruz for several months now (you can tell by the shoes) and I can’t help noticing that people are nicer here. They make eye contact and smile, they chat with ‘strangers’ in groups, they offer quiet compliments in passing, they have amazing style, but each to their own, there’s none of that insecure fashion sheep bs, when a traffic light changes, no one even honks!

It baffled me. Where’s all the anger? Why aren’t people being shitty to each other? How can it be that the people with money don’t seem to think they are more important than everyone else? Why, I thought, do people seem to get along so much better here? For a while it all seemed utterly mysterious until it clicked.

People here are happier. They are accepting of others, their lives are richer, fuller, more magnificent because of the others passing through life with them. I’m as likely to see a in a generic business suit having coffee with a friend sporting multiple piercings and dreadlocks as a cop sharing a laugh with college kids celebrating 420 with a joint so huge seven people had to claim shared ownership as only one ounce is allowed to a person in public at a time. It was a defence the men and women in blue were happy to accept. With a shrug and a smile of relief that they didn’t have to crucify anyone for having fun, they high-fived the group and moved on.

I have days when I can’t stop smiling.

And every time I see multi racial children with their ultra-white granddad or some ‘scary’ black dude offering help with such gentleness to a Korean exchange student who can’t figure out the bus system, I’m awed. This is how it’s supposed to be. There’s very little fear of others because they don’t look like you.

It’s not that I didn’t see these things in other places, I did, but not to the same degree, or any where near as frequently as I do here.

Don’t get me wrong. There is a horrible homeless problem, there is crime, there are racists, though I haven’t personally witnessed any blatant discrimination here yet— not something I can say about Los Angeles or Atlanta or even New York. But I’m not that naïve, It’s here. There are dangerous drugs and mental illness, there is domestic abuse, of course there is. Santa Cruz isn’t some Shangri La, just a pocket of humanity brave enough to dream we could live in a place that is at least Shangri La adjacent. You know, not Eden, but one of it’s suburbs.

Living in a community where you actively seek to interact with many others, each quite different, on a daily basis as opposed to avoiding human contact unless they are the exact same as you, is enriching. Differences are embraced, celebrated, and above all respected. It’s like living in a museum that displays multiple artists and art forms, holds concerts for all types of music and dance performances from every culture, instead of just one bland canvas done in weak pastels that everyone allowed to enter can agree is ‘very nice.’

One reason people seem so happy here is that this city is a blending of business, art, university, nature and community. One reason is the ocean, so close and so calming. One reason is the forests, filled with ancient trees and budding life. One reason is that it’s hard to start an argument with people who are generous, sharing, and accepting of the fact that maybe that mean guy just had a really hard day.

I’ve watched many people, including my daughter, share their food with the homeless, seen construction workers offer a tarp to a couple without shelter, witnessed an entire group of young people at a farmer’s market care about a stranger who had just been ditched by her boyfriend. Nothing obvious, they just sat down near her and spoke softly and kindly until the tears subsided, then they invited her to join them for lunch. Many of you who are reading this would have rejected this group out of hand, they were tattooed, some barefoot, they wore beads and symbols of coexistence, they probably did yoga in the park for god’s sake, but their empathy made them worth more than any movie star or millionaire in that moment. Would you have made an effort to comfort a complete stranger in a fragile state?

And every day I go out three times to walk my dog. Sometimes I don’t feel like it, I’m tired, or working, or just lazy, and every time, I’m glad I went out.

Every time.

Every time I meet someone great, like Elissa, my downstairs neighbor who happens to have a degenerative muscle disease, a love of writing, and a wicked sense of humor, or Stuart who sits on the corner during the frequent bike or foot races along the ocean route and applauds every single one of the participants. Every. Single. One. It takes hours, and the grateful reactions he gets makes me think that he has chosen his occupation well.

It’s been hard lately to stay positive about my race—and I’m referring to the human race. With the many dicks in the white house and the constant barrage of empowered hatred, ignorance, and dark-ages religious dogma causing so much pain in the world, so senselessly, it’s enough to make me want to give up and live in a cave.

Or not at all. If we can’t live together with dignity, what’s the point?

So last night, after yet another day of being horrified by images of substandard human behavior, I went out at the smoky coal end of dusk. My eyes were cast down and I felt as though enthusiasm and hope had been vacuumed from my body leaving me spent and disgusted. People suck, I thought. Even people I once respected have fallen so far from grace in my eyes and my heart that I can’t even look at them. As I walked the half block toward the shining silver sea, a car slowed for the intersection on the street over looking the ocean. It was too dark and far away for me to see who was in it, but as the car came to a stop, I heard the voice of young girl, maybe six, shouting out the window, “Hello! Hello!” she called to the world outside, to everyone. Not to me in particular, there were many people out walking much closer to her than I was. She was angling for an answer, trolling for a connection, fishing for a friend, and I understood that.

Because I’m me, and I don’t give a crap how stupid I look, or care if anyone knows what I’m doing or why, I answered. That innocent voice in the twilight deserved a response.

“Hello!” I shouted, waving madly from thirty yards away. I had no idea if the kid could even see me. I just wanted her to know she’d been heard, that we were out here, that her joy and her friendliness would be reciprocated by other, like-minded souls. The car began to pull away from the stop sign and just before it was out of earshot, the little voice called out four more words.

“I like your jacket!” it rang out, filling the coming night with presence.

I threw my head back and laughed then shouted back, “Thank you!”

I don’t know if she heard me, but that’s okay, because the ‘thank you’ wasn’t just for her, it was for her spirit, the effect she had had on the air, the universe, the love of sharing a moment.

Four words, and my faith in humanity was not just restored but recharged. I felt as though I had received a benediction. A blessedly religion-free benediction of possibility.

What will you shout today? Will it be in anger or joy?

If it’s joy, share it. Shout it.

And I will answer.

 

Shari, August 15, 2017

 

America, Life in General

Working Wounded

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I don’t think I’m alone. It’s hard to throw myself into a new book while the world is churning with hatred and fear. Hell, with all the selfish ugliness that’s been unmasked in our society right now, it’s hard to keep any faith in humanity as a whole. I find myself stunned and bleeding. I feel emotionally hammered, bruised and disheartened.

So how do we maintain not only our ‘normal’ lives but keep working to stop our country and the world from sliding dangerously backwards.

It’s become so obvious that a large portion of Americans are making what I would call really bad choices. I’m sure some would say the same of me, though the difference is that I don’t want to deprive anyone of anything to satiate my fanaticism, make money, or make myself feel better by making others less.

As people, our choices define us, and those definitions are definitive!

It seems to come to this—Are you willing to be of service to others for the greater good? Do you respect the individual and equal importance of every member of the village? Or are you concerned only about what affects you?

If you are someone who prefers ignorance (choose not to learn anything new) and isolation (America first! Christians first! White males first!) I’d like to share some wisdom with you. It’s not my own wisdom, it’s been going on since man first stood up and walked, even before that when as little more than grunting monkeys we formed groups to hunt and protect our young. Relationships, families, cities, countries, and especially a world of seven billion people do not and will not work if you think only of yourself. If you live alone on an island—Go for it.

I wish there were an island big enough for all of you who think yourselves so much more moral than everyone else so that you could be alone with your specially cherry picked ‘ethics’.

But then how would that work? Everyone on that island would be more important than everyone else. Would you live on a little square and have no contact with others? If one has water and another has a fruit tree, will you not trade or share? Even for your own survival? If one worships the sun and you the moon, do you lay in wait at night to slaughter the day dwellers?

I understand that you are afraid. “Those day people look so scary, they have bronzed skin and sleep in the afternoon, it’s just wrong! They must be wrong because I’ve based the entire justification of my existence on being a moon worshiper, so if they are right, my whole being is invalid.” The fact that it’s okay to worship the moon and the sun cannot be allowed, your brain is too narrow. The idea that nothing needs to be worshiped but instead cared for with love and honesty is unfathomable to such a mentality. It’s hard to be comfortable with what you do not understand. I get it, you are afraid.

Then I am reminded that are so many people, the majority I believe, who are proving that they do care for the greater good. In spite of being mocked, spited, belittled and lied to. We care. We drag our eviscerated hearts out to be stomped again, and we will not stop.

It’s scary for people who know nothing except what they’ve been force fed to listen to other voices. But hear this, not only are the loving strengthened each time we are challenged, you can hear our strong hearts beginning to thrum together. The drumming of stronger wills is growing louder.

And here’s what you should fear. Being left out of the whole, alone and stranded on your island of privilege. Why not be motivated by helping others, by being part of a whole, by asking and searching for answers that work for us all? Why not choose a motion that is fueled by love not fear?

Because now as a society we know too much to cling to the illusions that crimes against humanity are ‘patriotic’ or ‘we’re number one.’ By now, we have seen the abominations that arrogant power mongers and religious fanatics have done to humanity. We have witnessed the suffering and the illusion of ‘us’ and ‘them.’

The number is growing steadily of those who see the insanity of assumed privilege for what it is, a shallow veil for narcissism and evil. More and more are refusing to become that kind of sub-person, to teach that ignorance, to pass on the onus of that fear to the next generation.

Because where will that take us? We already know, we’ve been there. Again and again and again.

To see oppression and elitism as things that are good, or far worse ‘patriotic’ tells me that you listened only to one frightened voice. You have allowed in only the words of the men and women who have justified their bad behavior, who need to control you with fear, who—if they had the courage to admit what they truly value—would stand naked and exposed for their pettiness and their heinous crimes. And all they have to cover themselves is a manmade flag.

A good quick example of that kind of misinformation and justification is an early slave trader. A man who we credit with having ‘discovered’ a country with hundreds of thousands of people living on it already. He enslaved those people, killed them, hunted them with dogs, sold girls as sexual slaves (the nine to eleven year olds were the most popular) and still, to avoid teaching our children our actual history because they might learn the truth from it, (I get it, you are afraid) we have elevated this monster to a national hero. Yes, it’s Christopher Columbus.

You don’t have to believe me. You can read Columbus’s own diary, and his son’s who went on to become governor of the islands after him. Together, they are responsible for the deaths of six million people, an entire race.We don’t teach our children who he really was and what he did because we are ashamed.

Aren’t you proud?

Ask yourself, do you need to see “America” as an unassailable shining ball of light? Or can you acknowledge that it has deep veins of evil, profiteering, power mongering that, far from being wiped out, are alive and festering in today’s Americans. Perhaps because we have not faced the truth about ourselves and our history.

The US is not fucking Tinkerbell. It’s a living, breathing, changing organism of which we are all parts, cells, if you will, of a greater body. When one part gets a cancer, the whole being suffers, shrivels, and wastes away.

So today I will hitch up my sagging heart, try to lift my jaw from the floor where it keeps falling and love again. I will raise my eyes to the horizon and focus on a happier future. I will create, I will help where and when I can with what comes before me. I will fight, broken and bruised, flinching even, but moving forward, embracing the change that is the evolution of our species.

I didn’t start out this way. I was raised white, privileged, Christian, and if I’m honest, afraid of what I didn’t understand. So I set out to meet my ignorance and I changed. I know this fight may leave me with cauliflower ears and permanent brain damage, or I may die trying to pull out a comrade, but I will have learned, listened, traveled and acknowledged the rights of others as equal to my own. I will know what my choices are and why.

I will belong.

Will you?

Come on, if I can do it, you can do it.

 

Shari, January 30th, 2017.

 

 

Life in General

The Long Kiss Hello

 

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For twelve years, my family has lived in an amazing home, ten acres with mountain views cradled by the Angeles Forest, yet only minutes away from Los Angeles proper. Our daughters grew up here, able to spend their days outside in nature and beauty instead of super-glued to a video game or a computer screen. Yet five minutes down the hill brought us to traffic, and the city.

Both of our daughters are cognizant and grateful of the home we made, there were many tears and sighs in our final days in that house. As the rooms emptied, our hearts felt the space of loss. We accept that. We waded bravely into that pain and wallowed just long enough to cleanse ourselves before turning our eyes and our hearts to the future with fresh vitality and a surge of momentum.

That home and those years will forever be a bright light in our past. I think as humans we feel the dichotomy of painful partings, the joy of having known people or places and the wrench of losing them so that when we look back at our lives we don’t see only darkness. Like a lantern, glowing farther and farther off, but always a beacon of warmth in the misty night our days gone by.

But now, finally, it’s time to move north, to trees, to rain, to creeks, to mushrooms, to other people who respect their relationship with the earth that sustains them. Along the way, we will make a few stops, it’s quite a journey towing a 37 ft camper.

Our first stop is near Ojai, California. Our trailer is nestled in trees next to a stream, the rain is coming.

Our first night here I slept like an angel in a cloud made of lullabies, the sound of droplets pattering a cleansing tattoo on the roof above me as I cozied deeper into my down comforter. In the morning I woke to the giggling stream, whispering its amusing secrets to me through my open window.

Brilliant.

I can feel the city smut melting away from me. Hell, for the first time in months I can actually see it for what it is, a cloak of undeserving annoyance, a saturated blanket of bad choices and confusion. Here, the worries, clutter, noise, and frail human egos are first exposed, then rapidly diminished. You can see them for what they are, a waste of life, an excess of self-involvement. So eager are we to make something of ourselves, to leave our mark, to deny death, that we learn to confuse activity with true forward motion. All the busy-ness, the mental spinning, and caring what other people might think, help to hide the fear that we might mean nothing, that yes, we will someday die and ultimately be forgotten.

I think that’s what the stream finds so funny. Humans who believe they can last forever. It’s so much less stressful to remember you are mortal, and that’s okay. Sort of…takes the pressure off.

Of course, we are the same magnificent creatures in the city or in a forest, but it is easier to distinguish what serves you and what doesn’t when you look outside yourself. The everyday worries that consume us are more likely to be blown away when you watch the breeze making the leaves mimic the flow of the water through a magnificent gorge, just as it has for millennia. To these cliffs and trees we humans are a fleeting image, a second, a flash of movement, if even that.

We are parked in an almost empty campground next to the flowing creek dappled in sunlight dancing with the soft shadows of trees. Lichen and mushrooms are everywhere, moss grows on stones, moisture graces our lungs and our skin.

In some ways, our new life is smaller—well…simpler. In other ways it has expanded to epic proportions so that now where I once saw a narrow lane, I now see a huge vista opening before me with endless possibilities.

I feel free.

Won’t you join me?

 

Shari, January 11th, 2017

art, beauty, creative inspiration, Life in General

Overflowing.

There are times in your life when beauty shines undeniably around you, and there are times when you find it in something as simple as moss between stones. And then there are the times it flows up, spilling out of your very self, as though you become one with the magnificence of the world and humanity all around you. For me, that happens most often in Venice. I cannot tell you how many times a spongy joy has saturated my heart, rising up until tears have filled my eyes in the last three weeks. Everyday I have been inspired to work with a fervor that seldom comes this many sunrises in a row. And I have three more weeks to go.

The bounty of creativity and art here are impossible to deny, and why would you want to? I gaze at art in a museum or a church and feel ecstasy. I stand on the edge of the fondemente and from the soles of my feet, the silver blue of the Adriatic ebbs into me. I take a spill in a square, and the kind people rush to help me. I do not know the Italian word for ice skating, so I cannot explain to them that after years of training 8 hours a day, falling is a familiar feeling for me, but I smile and wipe my hands and tell them how kind they are,and how grateful I am for their concern, but it is nothing. I am laughing, “Niente, niente.” My tripping has given me their kindness as a gift.

Joy pervades everything here for me. A simple stroll through the ancient streets, the singing greetings of ‘Buon Giorno!’ from the shop keepers we’ve come to know, or even strangers, ring like the bells of the Cathedrals that are all around us. Time after time the simple awareness of where I am now mists the world around me as my chest is saturated with  love of the moment. A Madonna painted by Giacomo Bellini is so drenched in color and beauty I cannot speak for the brilliance of how much it moves me.

And here is what I have to say about that. When beauty brings you to tears—weep, sob, let the tears flow with all the love and connection of which we are capable, and that is infinite. It is not only here that I feel this, it is more a state of mind, it’s just that here, in this ancient place still so full of life and passion, those exposures are closer to the surface, more available, and more constant.

We choose what to see and do in life. Often, we choose what to feel about it. With every word you put out, every smile or scowl you give to another, you plant a seed.

Will you grow a flower? A vine? A magnificent oak? Or something dark and poisonous.

There is beauty in darkness too, I do not deny that. But it’s up to you to nurture your own soul, to know that the stars are still there even on the cloudiest midnight. It’s all there for you, embrace it, let it go, weep for the perfect bliss that is in it.

Take it in, and give it back.

Shari, February 3, 2016. Venice Italy.