America, beauty, cancer, children, depression, family, Life in General, Marriage, parenting

Destiny Always Leads

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You can dance through life, but destiny always leads.

 

I hadn’t planned to go to Prescott Arizona, but when one of my husband’s few remaining relatives took a fall and relapsed from her brain surgery, I grabbed a carryon, threw in a few sweaters and headed for the airport.

I didn’t want to go to the deep red state, carpeted with sage brush and gun stores in seemingly equal proportion, where the air is so dry and the people are so conservative it makes my nose bleed, but someone needed me—so I zipped up my suitcase and my mouth and went to help. It’s what you do.

I have lots of family, and sadly, as with every family, I have lost quite a few of my very favorite relatives, I’ve sat bed-side at home hospice through the end, cleaned houses turned to hoarders’ caves by senility, and spent endless hours dealing with lawyers, hospitals, insurance companies, and hysterical loved ones who selfishly tried to make it all about them. I’ve shopped for caskets, planned memorials, and visited gravesides and hospitals enough for a lifetime. I have comforted, fought, stepped up, and wept, I have wept as I thought I would never weep again.

Until I did.

Luckily, overall my side of the family is a healthy, long-living bunch. My mom is one of seven sisters and I have a large family on my dad’s side too, so there are plenty of aunts, uncles, first, second and third cousins to keep those photo Christmas cards rolling in. I look forward to seeing how everyone has grown, where they’ve gone on vacation or to school, who’s starting college, graduated, gotten married, pregnant, addicted, arrested, the whole sordid, magnificent, ongoing, family saga.

But my husband is an only child with no offspring of his own. He has only one first cousin who also has no children, so his generation is functionally the last. He wanted children of his own very badly, but instead opted to care for my girls and raise them with me. It wasn’t always a job filled with gratitude or promotion, but ultimately they came to love and treasure him because he adores them, takes care of them, always puts them ahead of himself, but mostly because he treats me like a treasure and they like to see me happy.

But it’s not the same, I know it’s not. I know that he gave up the dream of marrying a younger woman than me (I’m four years older than he and didn’t meet him until I was 40) who could give him children and the subsequent family that flows ever outwards in the form of in-laws, grandchildren, future wives’ second families, ad infinitum.

Okay, maybe only one wife, but you get my drift. Some families seem to keep expanding like yeast when you soak it in water, and some families sort of slowly empty like a cookie jar that no one refills. Once, shiny and new, it was stuffed with multiple generations, group gatherings, weddings, and birth announcements, but now it sits, chipped and gathering dust on the countertop, and all that is left inside are the funerals and a fading family album.

But that doesn’t mean the cookies weren’t delicious.

It’s odd to say, but I think being part of a large, extended family is both an advantage and a drawback when it comes to hardships and death. I suppose the fact that I have been through much loss makes me better prepared to handle the tragedies when they come, on the other hand—they come more often.

I’ve learned things. I know who to speak to if you want to get the right care, I know not to harass nurses for doctors’ information, or challenge the insurance company without a lawyer, I know what details should not be allowed to fall through the cracks, I know people will lose it sometimes, that they will laugh inappropriately to keep from going insane, I know how much work it is to clean up after a life and dismantle a home, I know that relatives will fight over things they never cared for in life, I know that this too shall pass, and I understand that I will now have a new indelible date on my calendar—a death date.

Stepping back into caregiver role is familiar for me as it is for many people my age, especially women. It so often falls to us to care for the infirm or hold a hand as a spirit slips quietly over. I know what it is to have someone in room with you one second, and then they just aren’t there anymore. I truly believe that in general women have more strength for suffering of all kinds. Throughout our lives we have dealt with blood and pain on a monthly basis, seemingly irrational emotional upheaval has been a frequent visitor, and cleaning unthinkable messes is all too familiar to us. I don’t mean to discount the strength that men have, it can be profound, but it is seldom sublime.

The times in my life when I have forced myself to function while tears streamed uncontrollably from my eyes and my voice broke from the strain of debilitating emotion are too many to count. Inevitably when this happens to me whoever I am dealing with, confronting, or comforting, will tell me to calm down or try to sooth me. Mostly because an honest display of feeling makes them uncomfortable. To this I always say, “I am fine. My emotion is not a weakness, it is a strength. I can, and will, go on. I can feel all of this and remain standing”

So when people start to lose it around me, I double up on grit. I get so full of grit I might as well be made of sand, and sand, as we all know, melts into glass. I have never been through the fragility of a severe illness or a death and not come out of it feeling more beautiful and enriched than I was before. The hue of sand may be bland, but after it passes through the fire, it turns into colors that deepen and strike back at the sunlight that strives to pass through them.

But not everyone has that sense of recovery or the experience to know that they will. Some people have bad things happen and say, ‘why me?’ rather than, ‘my turn.’ So when I was talking with my Aunt-in-law, who has no children and made most of her life choices around herself all her life,  my perspective was somewhat different than hers.

In the last ten years this aunt has lost her parents, in their eighties, her brother, in his sixties, and her much older husband. This is nature, this is the circle. Family members grow old and they die, and if there are no children, the family line eventually ends. This is a fact, not a punishment. So when she looked at me with tears in her eyes and bleated, “What is happening to this family?” I was able to look back at her with a smile as sure as dawn and say, “Every family goes through these things.” Then I told her that because of my charity I have often dealt with families losing a young child and pointed out the difference between losing a three year old and a husband in his eighties. I know it’s not any easier to lose a husband than a child, but I never met a parent who wouldn’t change places with their child, if only they had been given the choice. I told her that my great-grandmother buried all five of her children before her own death at 104. That shocked her into a different, much needed, perspective.

Then I sat down and took her hand. I told her the Buddhist story of a woman who lost her child and was so distraught that she went to the monk in her village and asked him what to do, she wanted nothing but to die.

He gave her an empty jar and told her, “Take this jar around the countryside, and every time you find someone who has not lost a loved one, ask them to put one pebble in the jar. When the jar is full, return to me and I will tell you what to do.” So the woman took the jar and went from village to village, from house to house, but she never did get even one pebble, for every family had lost someone beloved. What she did find were others who had suffered as she was suffering and and they comforted her, they understood and shared her loss. What she found was that she was not alone, that death and loss were an integral part of being human. At long last, she returned to the monk, gave him the empty jar, and thanked him before going on with her life, always taking time to help others through their losses and their own unique, but familiar, unfathomable pain.

The time came for me to return home for other family responsibilities and my husband stayed on, he’s still with his aunt. At the departure gate, I received a phone call that another family member (mine this time) has just been diagnosed with cancer, and so that journey begins. Already filled with leaden sadness, my trip home was one misadventure after another, nasty airline personnel, bad directions, a bumpy flight through storm clouds, lost parking ticket, and on and on until it cumulated in me leaning against a trash can in front of terminal two at San Jose International and crying from my gut just long enough to bleed that poison out before bucking up and getting on with it. If anyone bothered to notice, they may have thought I was weak or broken, but it was exactly the opposite.

Somebody needs me, and I need to be there.

We all get a turn. We all hold a hand, feel the desperation of not being able to make it better, we all wake up at night and dread the coming dawn, we all think we will not be able to take one more step. But we are not alone. Each of us knows devastation to our souls at some point. Though we may feel that no one suffers as we do, if we search for them, the jar stays empty, at least until we fill it with compassion and memories.

And the light of a thousand departed souls.

Until we join them.

Be brave, be strong.

Cry for the loss.

Cry for the strength that it shows.

Your pain is love.

Would you have it any other way?

 

Shari, December 3rd, 2018

 

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