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.
And nothing matters.
See how beautiful the moon is.
Shari, March 20th, 2023