beauty, ILD, Life in General, lung damage

The Third Act

If there’s one thing I’ve always been able to count on it’s that I have more to do. More to create, to live, to experience. And so, when you find yourself presented with the option of time running out, of possibilities thinning and horizons growing hazy, it comes as a surprise.

And adjustments must be made. Almost two years ago, my husband had open heart surgery, it was scary, especially the complications, nerves were cut and injured during the procedure resulting in neuropathy, constant pain created by bundles of nerves that, unable to reconnect, shot out in bundles, like roots searching for water, only to remain exposed and crackling, electric lines severed but live.

Then came covid. We both made it through a bad bout, but two months later, Joseph was having trouble breathing. An ER visit ended in an eleven day stay while doctors tried everything to calm his pneumonia, to open his lungs. We were sent home with oxygen machines and tangles of tubes. A few weeks later, he went downhill again, and back we went.

Three times now, we have opened our doors to emergency personnel, I’ve followed the ambulance to the ER, days have been spent on breathing machines with various treatments, different doctors trying to find a reason, an answer, a solution.

And then, when he was in the third time, and we thought it would be the best time for me to visit our daughter in Santa Cruz, as he was well taken care of, I got a phone call from him.

Our younger daughter was at the hospital with him, which was strange because it was a weekday, workday for her. He started, with softness and love in his voice, to tell me that he had been visited by a different doctor, one whose job it was to deliver bad news.

They had done all they could, there was no curing what he has. It could be five years, maximum, or it could be any time. I put the phone on speaker so my daughter could hear.  My husband reassured me constantly, concerned only for my well being. My youngest is a rock, she actually explained as best she had understood and made us all laugh. She’s remarkable that way. My older daughter and I abandoned the hike we were headed for and instead went to a beach where no one would know her so that we could walk and be alone. Tears came with shudders, she hugged me, we walked and breathed and saw beauty, I swayed with the impact of what we had learned, knowing all the while that Joseph and I would face this too with grace and courage.

I flew home as soon as possible and went straight to the hospital. We cried some, tried to understand what was happening and break it down, but the reality was this: His lungs, probably damaged since he was a child growing up poor in Los Angeles, had been ravaged by mold, rat droppings, LA air, you name it, and the covid had kicked it up. My husband, who never smoked or did any drugs, had only about an eighth of his lung capacity working. There is no cancer, it is called ILD, Interstitial Lung Disease.

And the third act begins. Of course we do not accept that this is a final or an absolute. All his life people have told Jospeh that he cannot do this or that, he would not succeed, it was impossible, and yet again and again he has. In many ways he has been my hero because of exactly that.

Most likely, Joseph will be on oxygen for the rest of his life, a machine that breathes, creating extra oxygen for him, connects by a long plastic tube. At night he wears another mask and uses another machine that expands his lungs to give him extra oxygen. He can only walk short distances before he’s completely winded. He will never fly again because of pressure changes. The medications he takes for his heart and now his lungs sometimes fight each other, he is seldom even comfortable.

And so we have learned to laugh, to try to find the things that bring us pleasure. Friends in Seattle loaned us their fabulous home overlooking the Olympic mountains so we would have a place to find acceptance and make the seismic shifts to settle into our new life.

There are so many things that we can do, we laugh often, we have a made a foray or two into the world, conscious of battery power and available plugs. We took a short trip to the Seattle Asian Art Museum, where we borrowed a wheelchair and for the first time, I pushed him around, him holding the portable air compressor in his lap. The wheelchair was too small, almost  child sized, and his knees were high, and when he tried to get up he was sort of stuck in the seat. We laughed a lot.

When we were leaving, the most gorgeous group of children, I’d say first grade, were playing on the lawn. Joseph was walking slowly, pulling the oxygen machine along behind him the tube wrapped behind his ears and flowing into his nose. One of the children was watching him, she came closer and stared up at him, maybe a foot away, fascinated and undeterred by adult pretension. I smiled and said, “It’s oxygen, it’s helping him breathe.”

This remarkable little person said, “I know that humans need oxygen, but why does he need that?”

We tried to explain, but the battery was running out and Joseph was exhausted, so we slowly made our way to the car. Once we were in and plugged into the car charger we both said, “That kid will be a doctor or a scientist, for sure.”

In truth I had been fascinated by the unabashed curiosity and openness. Yes, I thought, that’s the right attitude. Let’s be curious, let’s be open, let’s see what life will bring.

There is the crescent moon, there is music, there is rain. We have laughter, and love, and the gift of knowing that everyday is precious. We have something that so often alludes us in life, perspective.

Yes, this is the third act in the life of our love, and yes, it will be funny, and dramatic, and sometimes even overwhelming, but we will stand together to face it, our love is stronger than all of this.

Love to you all, forget those little things.

Everything counts.

And nothing matters.

See how beautiful the moon is.

 

Shari, March 20th, 2023

 

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