beauty, cancer, depression, family, Life in General, Marriage, men, writers, writing

Lost Seasons, Perfect Days.

Today it is raining in slivers of silver and the sky, white and pearly, seems more a tantalizing veil of depth than an opaque discouragement. My husband feels well enough to work a bit in the garage and so, while I have this time and energy, I will tell you the story of this last year, and I will not be afraid.

Not all of what we’ve gone through, just the part that has kept me from writing, from sharing too much, from turning my focus away from life outside our swirling world of doctor’s meetings, medical testing, inconclusive results, surgeries, biopsies, and uncertainly.

I’ll explain that in a moment, but it comes to this; life changes, nothing is certain, and we have had a face-slapping, butt-kicking reminder that all we have is this moment, so we might as well make the best of it.

My husband, Joseph, has congenital heart disease. It’s not his fault, it’s not a result of diet or lack of exercise, he inherited it from his mother’s father. He was told at forty that this is a condition that worsens with every generation. After three different angioplasties, where they go through the main artery in his thigh to place a stent in the blockages in his heart, we were informed that a double-bypass, open-heart surgery was his ‘best option.’ It should buy him anywhere from seven to twelve years.

So we waited, we prepared ourselves, we promised each other that life would be better when he could hike again, work without being winded, build up his strength, lose the weight that was impossible to shed when your metabolism isn’t working well because your heart is only pumping less than 60 percent of what it should be.

For six months we waited, for him to be vaccinated, to be able to get a place in a hospital during a major pandemic, to have all the pre-surgery tests done, and all the while he worsened, until just walking a few yards left him winded and holding his chest.

I won’t go into all the psychological side-effects of going from being a bodily strong man to a person who feels physically vulnerable for the first time in his life.  That’s too big a gaping break in the bridge of emotional damage to cover here, perhaps I will share it another time.

The day of surgery comes, because of covid, I am not allowed in the hospital, so I drop him off at five a.m. at the main door of the hospital in the dark, it is snowing. He hugs me and tells me not to worry, to never be mad at the girls, and then I watch him walk away. I smile and stay brave, but as he disappears into the lobby, I break. Not a hard snap, but a crinkling of everything holding me up, as though a beautiful, smooth piece of parchment paper is rudely crumpled into a small wad and then discarded. That’s all it was holding me up, paper. I weep all the way back to the hotel.

I try to lie down but every time I close my eyes all I can see is the scalpel slicing through the skin and thick, powerful muscle of his chest, the image and sound of his breast bone sawed through and ‘cracked’, as the surgeons so airily explain it, the clamps that pry open his rib cage and hold it up, his heart out of his body lain on his chest.

Several hours later, the surgeon calls to tell me it went well, he’s in recovery and should be coming around in about four hours. I breathe for the first time in what I realize is weeks.

Yet, in less than two hours later I get another call. The conversation goes like this.

“Mrs. Stachura? This is (name withheld) I’m the respiratory technician and I’m looking after your husband today.”

“Thank you so much, how’s he doing?”

“Pretty well, I actually think I’m going to go ahead and take him off the respirator.”

“Okay, great. When do you think he will wake up?”

“Oh,” I hear uncertainty in his voice, “he’s awake now. He’s looking at me gesturing for me to take the tubes out.”

“Then get off the phone and take them out!”

Here’s what I find out later. Not only did Joseph wake up far too soon after the surgery with breathing tubes down his throat, he was tied down to the bed, his hands were Velcro-ed to the bars, it was a nightmare scenario. They had not given him enough anesthesia, and he possibly even woke up during surgery.

Then he spends a week in the hospital alone. The nurses change every twelve hours and they are never the same so he has no real advocate. On the seventh day I am asked to come to the hospital for physical therapy training, to learn how to help him in and out a car, shower, up stairs, etc. When I finally find his room and he sees me, he is so relieved he just starts to weep. All I can do is hold him, ever so cautiously, the way you would cradle a fragile porcelain vase you just glued back together, afraid it will fall apart again, or that you will do it more damage. My husband is a shattered vessel, stitched back together, but not yet solid, not yet whole.

Our good friend Ben, a retired firefighter with the soul of a shaman, insists on meeting us at home to get him settled. Though I had said we’d be fine, of course he knew better. Things were much more difficult that we had imagined. The surgeon’s assistant had told us to buy a recliner because Joseph wouldn’t be able to sleep in a bed, and she was right as well. For two months he slept an hour or two at a time in that chair while I stayed on the sofa next to him. Eventually he convinced me to go sleep in the bedroom, but I kept the door open and woke up whenever I heard him stirring. Even walking to the bathroom was a challenge. Taking a shower was downright scary. I learned about blood pressure, sorted a confusing array of medications, changed wound dressings, and played cheerleader. (Minus the short skirt and kneesocks) It was a full-time, constant-focus occupation. All else fell away, and I didn’t even notice. Spring passed with no visits to see the flowers in meadows, no celebrations.

Other than a trip to console the mother of my daughter’s first love, who was murdered, and get her through everything from cremation to what would have been his twenty-fifth birthday, a trip that came over my husband’s own birthday, but which he would not hear of me not taking, because that’s who he is, more weeks passed with us not really noticing. Pretty soon it was summer, hot, but there were no visits to glorious swimming holes, and I had to hang heavier curtains over the windows so we could watch TV in the daytime, something we never usually do.

Eventually, he could venture out, just a bit, with a pillow strapped to his chest with one of my long scarves. I would say, “Open heart surgery,” to explain quickly when people stared, though my best friend told me I should tell them “I tried to get him to give up the blankie, but he just won’t do it.” I think I’ll try that.

But he wasn’t getting much better, we kept telling ourselves that the doctors only say that he’d feel better in a few weeks because they don’t want to scare you with the truth of how long it really takes to heal and get back to ‘normal.’ But surely, we kept repeating, this was all part of the regular healing process.

Then, six weeks after surgery, at one o’clock in the morning, Joseph woke me up from a dead sleep, and I could see the consternation and confusion on his face. “What the hell is this?” he asked, pointing to two lumps on his collarbones, both the size of my fist.

My first thought was lymph nodes, but they were too low on his chest. They were goose eggs on his collar bones, exactly symmetrical. We called the amazing Ben, who, being used to long shifts with broken sleep, listened to my report of his blood pressure and looked at texted pictures of the area, then told us to go to the ER.

The faces of the doctors were blank. They had no idea. They ran him through every test they could think of−CT scans, ultrasound, blood, urine, they brought in other doctors to look at him, but nothing. No one had ever seen a presentation like this.

So, we went home with no diagnosis and an appointment with his cardiologist. And at the cardiologist’s office we were met with the same confused expressions, more doctors came in from other rooms to say no one had seen this. Shoulders were shrugged, palms were turned upward in expressions of ignorance, No help there, but more tests were scheduled.

Since then it’s been a halting, clumsy dance of tests and fighting for more tests and clearer results, and being told nobody knows, maybe the Mayo clinic?, maybe special doctors in Philadelphia?, maybe this specialist, maybe that hospital. He went through several days of having radioactive substances injected between his fingers and toes then hours in an MRI machine. Joseph is claustrophobic, so though I wasn’t supposed to be allowed in with him, they brought me in to talk him through it.

Joseph would start to panic as a huge flat panel was lowered to within a half inch of his face and he had to hold still for twenty minutes. “Tell me about Venice,” he would plead.

So I would walk him through the streets of Venice from a chair a few feet away, speaking loudly over the machine so that he could hear me, we walked together over rain-glistening cobbles, along familiar canals, I described the costumes of Carnivale in great detail, the Murano chandeliers in the shop windows and hotel lobbies. We wandered the narrow back streets at night, and saw the torches lit and placed in iron holders as we walked backward in time while I showed him the story as it showed itself to me.

We were so filled with hope that this would give us answers, that we would have a plan, something to fight, to deal with, to accept even. But on the morning after those tests in yet another hotel room we got the news.

“No results, everything looks normal with the lymph system.” Joseph was angry, almost desperate, shouting, “Then what is wrong with me?”  I absorbed all I could but even trying to justify the results as something positive I was met with his frustration. I was helpless.

While he called doctors, I went into the kitchenette to hide while I lost it, sitting at a little built-in table in a Victorian hotel, I gave in to disappointment and frustration for the first time. My head down on the table I struggled to sob silently, sucking back the sound, until Joseph came in and told me to go ahead and cry, because I deserved it.

Since then, we’ve been through a myriad of other tests, including repeating that first lymphoscintigraphy twice more. A biopsy of the swellings, a colonoscopy with biopsies to rule out infection, and I can’t even remember what all else. Now we are more cautious with our hope, we’re stingier with expectation. That way the disappointment doesn’t overwhelm us, knocking us on our asses every time, it just laps around our legs, leaving us damp and chilled.

And still , we know nothing, as fall leaves in the wind begin paint the sky.

It’s been six months since the surgery, and he is worse than before the surgery. He’s still wearing a small pillow strapped to his chest to try to relieve the constant pressure that makes him gasp, sometimes cry out in his sleep, and often clutch his chest until the stabbing pain subsides enough to endure again. And now we get new information. If it is Lymphodema, it is not fixable, and it will get worse. When Joseph went to see the wound specialist−after six months he still has a hole in his ankle where they removed twelve inches of artery to use in his chest that hasn’t healed−the doctor noticed swelling in his leg that is dimpling. She told him that it can worsen and the skin can become ‘like bark.’

And now my husband, the man I love and adore, the sexiest man in the universe to me, confesses with a tear on his cheek that he may become a ‘monster.’ That I might be with a man physically disfigured.

I kissed him and told him not to worry about me, my secret fantasy has always been the leaf man, the half-beast of the forest, but I know it’s not just me. How does anyone adjust to such a thing?

With courage of course, with love, with time.

And speaking of time, spring has passed, summer is gone, fall is showing the last of its glory, and still we wait, but I have learned something. I have learned so much, but especially this−how to make even illness and uncertainty fun.

It’s a strange thing to say, to long for, to work at, but having fun and enjoying life is the best way to honor it all. So, we play scrabble for as long as he can sit up. We take very short walks in this place we chose for the breadth of its natural beauty. We drive to see waterfalls. We put on music and sway together. We find the moments to celebrate, to laugh at it all, and to love each other with a new ferocity.

At the end of the day, I am happy. I understand that we are not waiting for some result or even a new plan, we are living now, we can laugh now, we can share secrets and giggle, and make amazing food, and watch the light on the water from our porch.

There isn’t anything better than this anyway. Venice will wait.

Seasons have passed, but in those months, in those weeks, there have been perfect days, better than we have ever shared. We are together, and we will find a way to make even this fun.

Take care of yourselves.

Take care of each other.

Find those precious days.

And write them on your heart.

Shari, November 11th, 2021

cancer, Life in General

An Elk Ate My Brussels Sprouts.

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No, really. I was just bragging to hubby about how smart I was to leave the last few stalks in the garden as it would provide yummy fresh-from-the-earth vegies, when I went to pick some.

Pride comes before the fall. I stood looking at the mess made of all my efforts in confusion. The tops were off every kale plant, the parsley was sheered off at ground level, and the plump little brussels sprout globes were gone from the stalk or badly mangled. ‘What the…?’ I thought. Then I saw the hoofprints. The mesh fencing was still mostly up, but a section had been sort of smushed down to about four feet. Just high enough for an elk or a member of the elephant family of mammals to step over.  That’s when I realized that I probably wouldn’t want to eat the few remaining vegies because they have elk spit all over them.

I don’t know if you’ve ever seen an elk close up, but they are big, really big. Trying to keep them out of any food source is a bit like trying to scare off a mastodon with a broom. Both the extinct mastodons and very much alive elk are both herbivores and neither have particularly vicious reputations, but it’s probably smarter to just let them stomp quietly along their merry way and clean up the wreckage afterwards.

Sounds like a few relationships I’ve had, and, to be fair, the results of a smattering of my own actions. I admit it. But it’s also a lot like what happens in life.

Last week the best friend my husband and I have made up here, died of cancer. To respect the family’s privacy, I’ll call him Bob and his partner Jodi. We were with Bob through the diagnosis and his first treatments, including spending time in Seattle where he had his bladder removed. Then chemo, and when that failed, they turned to experimental immunotherapy.

It worked, the tumors shrank and he was told that though the cancer wouldn’t leave him, he could expect a good five years of reasonable health by continuing that treatment.

Having been on the board of a cancer charity where I worked closely with City of Hope for many years, I know a little something about what people and their families go through with diagnosis and treatment, and the many uncertainties. So, during conversations at that time, we promised our friend that we would be there for his girlfriend, Jodi,  who had only been with him for a single year before she found herself a full time caregiver, a role for which she was not prepared but stepped up to with grace and courage. Though in many conversations she privately confessed to me that she ‘had not signed on for this.’ I understood, it is a huge thing to give up your life to care for someone, especially someone you have only known a year.

Then the unstoppable pain started in one leg, nothing contained it, not codeine, not morphine, nothing. Bob resisted our suggestions to go back to the doctor and I knew that he was afraid of what they would tell him.

And it’s what they did tell him. Two tumors in his abdomen had grown together, and when that happens, the cancer speeds up. He now had a four by six inch tumor pressing on nerves and they gave him three weeks.

I went into neighbor mode. I cooked meals and delivered them, offered to run errands, sit up with him if necessary, anything I could think of to ease their pain. But in this time of covid, there were limited things I could do, and my husband was still recovering from pneumonia, so I had to keep a certain distance. Sometimes when I came to drop something off, I would wave through the window, and on one memorable afternoon, Jodi came flying out of the house putting on her coat and begged me to just take her for a drive for a few minutes.

I took her to one of my favorite spots and parked under the trees in the rain. She talked, and I let her, joined her, and tried to prepare her for what was to come. She’s been through deathbed scenes before, but it’s different when it’s your one and only, I know that, but not from personal experience. I have done home hospice for relatives and friends, but not a partner, so I could only express sympathy and rub her back as she wept. I hope it helped.

I’ll never forget the sound of soft rain on the roof of the car as the windows steamed and grew foggy from the exhales of my weak words of comfort and her gasps of sorrow. It is hard to die, but it might be harder to watch someone you love die. I don’t know yet. I’ve only done the latter, after I’ve been through the former, I’ll let you know.

My husband and I never did get a chance to say goodbye to our friend. Thankfully, though it’s strange to say, he died fairly quickly, slipping into a coma and then his labored breathing stopping at 12:45 on a Wednesday night. I happened to be  awake when Jodi texted me at 5:45 a.m. asking if I could take his daughter, who had come for the end, to the flyaway bus about an hour away so she could get to Seattle and the airport. After a quick discussion, hubby got dressed and left to drive the daughter all the way to the airport, (about two and a half hours one-way but we couldn’t bear the thought of her having to take a bus just hours after her father’s death) and I went to be with Jodi.

I stayed all that day, helping her clean up, crying, listening, encouraging her to sleep. She tried several times to lie down, but would pop back up again when her brain screamed reality at her. Twice she called for me and when I went in, she asked me with pathetic desperation that tore my heart, “He’s not coming back, is he?” I told her no, he wasn’t, but that he would always be with her.

So I took a chair and sat by the end of her bed, propping my feet up close to hers, and we cried more, and laughed in that sad gurgling way one does when one more onslaught of grief will snap you in half. At one point she looked up at me with alarm in her eyes and asked what was wrong with her. She said she felt like someone was tugging at her right sleeve. I explained that lack of sleep will do strange things to your body’s physical sensations, but I also suggested that it might be him, just patting her arm, letting her know it would be all right, and I told her to watch for signs from him, ways that he might try to contact or comfort her. We discussed things that they shared a love of, eagles and the sea both figured strongly in her heart.

At about five o’clock in the afternoon, she finally fell asleep. I stayed an hour, then decided to head home, leaving a note.

You are loved,

You are supported,

I am a phone call away.

She slept for several hours, but woke before dawn. I joined her a bit later and we spent another day just trying to sort reality and absorb the blow. It’s a feeling of total helplessness and the only remedy is to get through it. By the third day I took her out for a drive  just to get her out of the house. As we drove through a dense part of the national forest, an eagle swooped from a tree and paralleled my car for a hundred yards or so before veering off into the canopy, and we held hands and smiled through the tightness of tears in our throats. Now, a week and a half later, she’s doing much better and I’m helping her look for a new place to live. She does not want to stay in his house without him.

Death is like elk or even mastodons in the garden. One long swoop of a tusk churns up everything we’ve planted, every well plotted future meal and harvest. We don’t expect it, we can’t stop it, but we can listen with awe and gratitude to the bellowing in the distance as the herd retreats, leaving us to clean up, to replant, to reflect on the fragility of our human endeavors. All of us are temporary, they seem to say, that’s okay, it all comes back together in the end.

And yesterday, when I went to see my friend, she told me with a smile that she had woken in the night and heard him calling her name, not sadly, not desperately, just to let her know he was there.

I thought about that moment. His strong, loving voice echoing from the distance far ahead, letting her know the way, so that we she can follow and not get lost, and that there is nothing to fear.

Like a herd of mastodon calling across the Pleistocene marshes, ‘We were here, we too passed this way. Do not be afraid.’

So I will replant my garden, I will love and lose and learn until it is my time to pass through those marshes.

And I will not be afraid.

I miss you, “Bob”.

Shari, January 17th 2021

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