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

 

Life in General

The Shari Action Doll

 

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Here’s me in my NY modeling days. That’s Fifth Avenue I’m crawling across and a row of traffic coming right at me!! Let’s get Shari, she’ll do it!!

That’s me! ‘Shari Action’ is a nickname that a modeling friend gave me when I was sixteen. I was always moving, talking, jumping, taking chances, trying new things, and filled with energy. Always ready to try something new, and constantly busy creating or doing. Modeling was only fun when I got hang off the edge of a building or dance thru traffic on Fifth Avenue. (See above)

In fact I remember when a particular hairstyle was in vogue, it was a basket weave, very labor intensive. When a client asked a hairdresser who worked with me often if he could do that on me, the stylist responded, “Sure. Give me two sedatives and a neck brace and I’ll have her out in an hour!”  

In other words, I could not sit still. 

But my hyperactivity didn’t start then. As a kid there wasn’t a tree I wouldn’t climb or a fort I wouldn’t build—and sleep in! Now? I travel, cook, direct, produce, act, write, mom, volunteer and clean my own damn house thank you!! And I love all of it. I love driving carpools, cleaning up after my girls have wrecked the living room with their friends, brainstorming story ideas with my husband, helping to build sets, gardening. What do I love most? What I’m doing right now. In fact, writing this blog has given me a burst of energy and enthusiasm to get back to my new book. Can’t wait!

I’m lucky to still, at 53,  have a ton of energy and enthusiasm. And I love my life now, whatever that may bring. The more I do, the more energy I have and I fall asleep every night exhausted and excited for the next day. 

What I don’t do is live on past laurels. Ironic, perhaps because I used the above picture, but that’s because it’s from the time I got my nickname and illustrates it pretty well. Past laurels aren’t real anyway, you know that right? Memories are elastic, they don’t freeze in time like some event popsicle that never changes or melts. You can’t keep a six pack of accomplishments and pop one open to drink with dinner. It’s over, you drank it, your part in it is done. Memory is 50% recall, 50% invention, and 50% projection. (Yes, that’s 150%, we tend to add a bit as the years go by.) The only thing worthwhile is what you are doing now, and it only matters how it effects you, not what anyone else thinks of it. I know people who actually define themselves by some ‘success’ from 30 years ago. Really? What does it matter if you won a trophy or had a hit song or made a million dollars…then? What are you doing right now? How are you contributing? What do you give back? Do you enjoy it? Are you more concerned with how, or if, you will be remembered than you are with seeing the beauty and opportunities around you now? 

Look again. 

My experience with the children I’ve known with terminal illness has changed so much of my perspective. No one but their family and friends will ever know their names. Some of these kids won’t live long enough to rack up a list of ‘accomplishments,’ yet they show more bravery, life and courage than so many people I know who live to be one hundred, star on a soap opera, live in huge houses, are pursued by paparazzi, or any of the other superficial marks of ‘success.’ 

Yet those children leave a remarkable legacy, worth far more than being ‘known’ or having six million FB likes. Their legacy is one of courage and love and the priceless reminder to live every single moment with joy and kindness. 

Now that’s something to be remembered for. And something to remember.

I gave a lecture a few nights ago and afterwards an elderly lady approached me and complimented me on my energy, speaking and enthusiasm. That was nice, I love connecting with people and seeing what they know that I don’t, but what struck me was when she said wistfully, “I wish I was young.” 

I don’t understand that. I don’t want to go back a single day. I’ve done many things, good, bad, crazy, and even scary, and I enjoyed almost all of it. But the point is, I did that. Now I want to move on and do different things. I look forward to getting older, to giving myself permission to do nothing, to watch the sun set, to take a nap, to read all damn day if I want to. It will be a different stage of my life, and I hope to enjoy it as much as all the other acts.

Of course, I do understand wanting to be young for the sake of health. Nobody likes to be sick or in pain. That, I get. To quote Woody Allen, “I’m not afraid of dying, I just don’t want to be there when it happens.” 

But I agree with the sentiment. I don’t think I’ll mind dying. I mean, what’s the alternative?  It’s not like I’m gonna get out of it.  Neither are you, by the way, so you might as well step up when it comes. And I believe that if you live your life desperate to be remembered, to create some kind of immortal sense of yourself, you are living a wasted life. 

Now, that’s not to take away from those people who truly have done great things and certainly should be remembered. But if I look at what I want out of life, the truth is, I don’t care if anyone remembers that I wrote that book, only that they found pleasure and humanity in it. That a phrase or a character touched them, possibly helped them in some tiny way at that point in their lives. I hope they remember that, not my name. I don’t need my performance as Viola in Twelfth Night to be celebrated or lauded, but I’m glad I made people laugh and shared their joy. I want my friends to think of me as a good person and my daughters to know I loved them. That’s it. 

I’m still Shari Action. I still do a hundred things in a day. Let’s take today for example. I got up, reviewed the final edit for “Scream at the Devil” and made changes. I picked apples from my tree and made apple jelly. The sound of the jars sealing as I write is as pleasing a satisfaction as any film I ever made, because it’s right now and I love it. I have a huge pot of Gumbo simmering on the stove, because my kids liked it so much when I made it last week that they demanded at least three times as much. I worked on my new novel, did some gardening, and wrote this blog. That’s it so far, but it’s only five o’clock! I didn’t hike because I wasn’t feeling well when I got up, but the more I did, the better I felt. 

And now, it’s hubby time. I’ll have to lure him away from the editing bay because, he, like me, loses track of time when he’s doing what he loves. We will sit together and watch the sun change on the mountains, we will laugh and share, and plan. 

God I love my life. I’m so grateful for all the opportunities, for all the moments, even the ones that aren’t easy, even the ones that make me look silly or bad. 

And as for making a name for myself and being remembered by people who don’t know me? 

Well…that’s not something I’m going to put too much energy into. The Shari Action doll doesn’t think much of that. She’s too busy and too darn happy. 

 

And she wishes the same, or better, for you. 

Shari, July 30, 2013.