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Journal

Breath

We all breathe.

From our first incoherent cry to our last rasping breath, we breathe over twenty thousand times each day.

We breathe so often that we take it for granted, until the moments when our breath is taken away.

I thought I knew what it was to have my breath taken away. By love. By art. By exercise. But everything changed this year.

In June of 2020, Allison and I were visiting a friend on the Pennsylvania border when her mother invited her to a surprise lunch. I spent that day helping to homeschool two kids and occasionally losing my breath as I chased them repeatedly around the farmhouse, up the hill to the barn, and around through the winding paths of the nine acres up beyond the chicken yard.

I lost my breath again that afternoon when Allison got James and me onto a conference call to tell us that her father, who had been growing mysteriously weaker for a few months, had been diagnosed with ALS.

“We are moving to Maryland. I need to help take care of him. I want the kids to have memories of him,” she said. No, she insisted. Even as the numbers didn’t line up, jobs interfered, and COVID overshadowed everything, Allison remained steadfast that she needed to be with her parents and the kids needed time with her grandfather, so James and I did what we could to make it happen.

Which is how we came to live part time in The Mothership.

As the weather grew colder and Rich’s health declined, we found ourselves moving from the role of frequently visiting family members to full time caretakers. Allison, especially, did everything she could to lift the load from her mother, who was struggling under the dual roles of nurse and grieving wife. As time went on, I began to take on some of the care as well.

Feeding times. Medications. Breathing machines.

It was the breathing that was the hardest.

ALS destroys muscles and one of the most important muscles in the human body is the diaphragm. Twenty thousand plus times day this muscle pulls and pushes the lungs, forcing air in and out. For Rich, the diaphragm began to weaken within a few months of his diagnosis. Chest muscles. Diaphragm. Throat, tongue, and lips… all began to deteriorate.

When you can’t work your throat or push your lungs to cough, phlegm begins to build up. It burbles in the throat, oozes down into the lungs, and becomes lodged. We’ve all seen the labels on the side of five gallon buckets, warning that infants can drown in a couple inches of water. For the last few months, Rich fought a daily struggle against the tablespoons of mucous which threatened to drown him.

He needed to breathe.

We would try to help using a cough assist machine. If you’ve never seen a cough assist, simply imagine a little white box with a few buttons on the front and a face mask coming to the side on a long hose, not unlike a vacuum cleaner. Twiddle a few settings, press a button, and this hellish Dust Buster forces air down the trachea at sixty miles an hour, forcibly inflating the lungs for about five seconds before slamming into reverse. Then the cough assist literally sucks the air from the patient’s lungs, often pulling with it a wad of thick yellow mucous.

Suction.

Rinse.

Repeat until they can’t take it anymore or you’ve done twenty breaths, whichever comes first.

Repeat again a few minutes or hours later, depending on how much drawing a breath feels like gargling.

By the end, Rich was using a BiPAP machine for much of the day, essentially treating it as an at-home ventilator. The machine whirred and clicked and hissed all day and night, breathing for him. It made him hard to understand, as every weakened syllable had to be forced from his lips through the storm of air which sustained him.

Eventually only Allison and I could make out what he meant most of the time, and that was just because she has experience talking with elderly folks who struggle to be heard and I have spent years trying to understand the discoherent rambles of adolescents. Still, he often used his few spare breaths to crack jokes. The last one I heard came a few days before the end, when he spent nearly ten minutes blinking and nodding and repeating short phrases as if conveying a terribly important message about his health, until it became clear that he was joking that, yes, he should sleep in his mobility chair so that his wife didn’t smother him with a hug in the middle of the night.

We all laughed, him included… but the thought that sleeping with one’s partner could turn from a joy to a danger was more than a joke.

He used every breath he had.

He fought for each and every one.

Until there was no more breathing to be done.

Categories
Journal

sleep inside

It’s been a few months since we used The Mothership because it’s so darn cold up in Maryland, but with the cold beginning to break and Richard’s condition worsening, we decided to do a quarantine and bring the kids up for a visit before things get too bad.

This morning I was laying in back of the camper, cocooned in my sleeping bag and debating whether was worth going into the house to pee and have coffee and write a little before everyone woke up, or if I should just burrow back into my bag and sleep more.

Then the camper shook and Walker wandered back to my room, blinking. “Oh… you actually slept out here?” he said, because apparently me saying goodnight to him the last two nights wasn’t clue enough that was actually sleeping ten feet from him.

I moved my glasses from the mattress beside me, saying, “Mmhmm. Mom and I told you I would. We didn’t want you to get lonely at night.”

He flopped on the bed and began to fold himself into a series of improbable shapes while saying, “But I have my sister here.”

“Ah. So you don’t need a parent nearby when you sleep anymore?”

He sat up and screwed his face into a variety of shapes, then made that odd I’m-about-to-tell-a-joke-but-I’m-eleven-and-emotions-are-hard-to-process croak he does sometimes. Then he shrugged and said, “You can sleep in the house. I’ll allow it.”

He immediately rolled off the bed, stumbled into the living room, and crawled back under his blanket. He was snoring again before I stopped giggling.

Categories
Journal

Heart Full of Sky

Tonight we stood at the bank of Kerr Reservoir and watched in silence the glimmer of the stars reflecting on the water. Dozens of points of light, only occasionally twinkling at the passing of a ripple caused by a fish striking at a water bug.

We looked up, and Alli laughed.

“Go tell Walker he was right,” she whispered.

I stood there a moment longer, captivated by the expanse of stars. It has been a very, very long time since I saw so many stars. Possibly as long as twenty years. When I worked at Scout camp we saw a lot of stars, but with Williamsburg right across the river, much of the brilliance was lost in a pall of city lights rising up to make the horizon glow white. A couple of times I packed blankets into the back of my Honda and tried to take my first wife stargazing, but inevitably my efforts were hampered by cold weather and the even brighter glow of Norfolk, which was visibly anywhere we went within an hour of our house.

For twenty years I haven’t been able to see this many stars.

Eventually, I retrieved Walker from a the Mothership. Together, we stood beside his mother as she pointed upward.

“You were right,” I said.

Walker gasped as he saw, for the second time that night, the faint wash of the Milky Way churning across the night sky. He had claimed to have seen it earlier, but when we walked out to the field at the center of the campground, the western horizon was still faintly awash with the last glow of sunset and, to our aging eyes, the Milky Way was nothing more than a whips of cloud still catching the reflected sun.

But now we couldn’t deny it.

Arching away above our heads and drawing repeated gasps of “wow” from the boy child, we could see stars by the thousands. He sat at our feet for at least a quarter of an hour, searching the sky for constellations, asking his mother questions about mythology, and repeatedly craning his neck back so far that he nearly toppled over in his effort to see more of the Milky Way. I pulled up an astronomy app on my phone and we took turns searching for satellites and planets until the battery ran low.

Life has taken some strange turns in the last couple years, and just when I thought it was settling down 2020 threw a handful of bolts into the gears, but I have never been happier. Standing with my best friend as we look at the stars with her son, I know that I am finally on my way to where I belong.

Categories
2020 Journal RoadSchooling RV Living

Mudflats

When I was around nine years old my mother, sister, and I went out to North Dakota so my sister could participate in a wider opportunity for Girl Scouts, which to my recollection was kind of the Scouting version of what these days you might call Little Renfaire on the Prairie.

I remember when we dropped my sister off at the expedition base. There were dozens, maybe hundreds of girls milling around, all getting their gear unloaded and stacked up beside rows of Conestoga wagons. I was captivated by one of the leaders, a woman with a strikingly deep voice and large muscles who kept shouting out commands as she helped heave large sacks of food from the open back of a tractor trailer. It seemed like it took forever to get everything organized, but eventually we left my sister with the Scouting group ready to head out across the prairie like a proper pioneers party.

While my sister crossed the grass ocean, my mother and I headed over to Teddy Roosevelt National Park in North Dakota. It’s one of my memories from that park that bring the entire journey back into my mind today.

We stayed at the park for upwards of a week. Some days we went hiking and found rattlesnakes sunning themselves on boulders. Some days we went into town to tour museums and attend stage plays based on the legendary history of Teddy Roosevelt. One evening the park rangers put on a campfire and told tales of the buffalo and wolves and other wildlife of the park. On one particularly memorable day, we were chased into the car by hailstones the size of golf balls as a tornado ripped across the grasslands just north of our campsite.

And then there were the times when we would spend a lazy afternoon down by the river that wound its way through the park. We would pick a clear spot on the bank, one with plenty of space between the brush and the river so we wouldn’t accidentally startle any rattle snakes. Mom would set her canvas tote down in the sand and I would head down to the waters edge while she laid out sunning and reading. I remember that she would lie as still as she could, just looking up at the broad blue expanse of the sky, more than you’d ever see back in New Jersey.

One time she laid out there so long and so still that the perpetually circling vultures started to land on the bank and flap their the big brown wings and quirk their ugly heads around to carefully watch her, thinking that maybe they just come across a prize. She let them waddle their way closer and closer until she could see their beady eyes peering out from amid the brown and red wrinkles of their mottled faces. Then she sat up all of a sudden, flapping her arms chase the buzzards away before they got it in their heads to actually taste her. They scurried and flapped away, squawking up a storm and mighty disappointed that they hadn’t actually come across an easy lunch.

While mom laid on the bank, luring death closer to her so that she could sit up and scare it off with a shout and a laugh, I played in the mud at the waters edge. I’d grasp handfuls of rich red mud from just below the surface of the water and play at tossing them back and forth in my fingers until all the stones and shells and bits of organic matter fell away and only thick, smooth mud remained. I played at rolling it around in my palms, circling it again and again until it formed a smooth red ball. I would work the clay again and again, making balls just about the size of my fist, each of them washed clean of grit and plant matter, then mash the balls together and work them until they formed a larger ball. Once the clay had dried enough to hold its shape, I would begin rubbing my little fingers across the surface again and again, working the clay to make a perfect sphere with a nice smooth surface. It would be another it would be another twenty years before I saw YouTube videos about Dorodango, a form of art from Japan in which sculptors create highly polished spheres from rough clay.

It’s been a long while since I thought about that week or two that we spent at Teddy Roosevelt National Park, but it popped in my mind again today as I sat here watching Walker play out in the mud flats at Douglas Lake in Tennessee. The sky and water are perfect blue, broken only by ripples and clouds. Across the lake, the Smoky Mountains march off to the east in rank after rank of cliffs and valleys, peaks climbing away into the distance. The deciduous trees are just about done with their colors for the fall, leaving wide swatches of mountains a soft green, broken in places where the few remaining oak and poplar trees show off their autumn glories in isolated bursts of red and orange. Between the water and the mountains, a ribbon ribbon of gold and red lakeside can be seen can be seen. It’s November, and the Tennessee Valley Authority is lowering the water level in preparation for preventing floods brought on by winter and early spring rains.

The water level is down a good twelve feet or more, exposing a wide swath of the lake bed and creating a wide flat of deep, rusty red Tennessee mud. The mud is broken only by the smooth round stones of quartz rock and upcroppings of shale. The red mud and scattered stones form an eerie Marsscape here in the homeland of many of the early American rocketeers. You can walk over to one of those miniature mesas and with your bare fingertips flake off huge chunks, some of which still bear the imprints of fossilized animal foot prints or shells that were trapped in the sediment as it was laid down eons ago.

Maybe there is water on Mars.

Within minutes of arriving Walker was begging to go down and play in the water. We held him off for about an hour as I taught a class online and his mother got things situated in the camper, but it wasn’t long before his pleas became so insistent that Alli forced Ellie to take him down and keep an eye on him as he made his first forays into the water. He returned covered in red mud and begging to be allowed to go back again and swim as soon as possible. We sprayed him down, exiled all shoes to the carpet outside, and promised that he could swim tomorrow… if he really wanted to.

Walker woke up around three in the morning insisting that he was too cold and we needed to turn the heater on. It was chilly, but not quite cold enough to justify running the electric heater. When I refused to turn it on, instead suggesting that he should put on a shirt and grab another blanket, Walker compromised by snuggling between me and the dog until, a hour later, I sent him packing because he was now complaining that it was too hot and thrashing around.

Given the cold night, we expected that Walker would give up on his swimming plans, but by 10:30 he was again agitating to get in the water. I was pretty sure that it was a terrible idea, what with it having been so cold the night before, but he made an expedition down to the waterfront and returned with the news that it was actually quite warm, so we agreed to bring him down to a swimming hole between the shore and a small island that emerged as the waterline fell.

Where does the boy end and the mud begin?

I’m writing this sitting in a red folding chair on the mudflat. My feet and legs are covered in mud from racing Walker across the deep, nearly quicksand mud at the edge of the water. Walker is… significantly more muddy. Just a moment ago, a helicopter from one of the local air tour companies swept low over the lake and Walker hit the deck, crawling up a river of mud with his body half submerged in red clay. We spent a good half hour searching for geodes along the fringes of the island, which grows larger by the hour as the lake continues to drain.

It’s been a good morning.

Categories
2020 Journal RoadSchooling RV Living

This Land

On Saturday we took the kids to the Native American history museum in Cherokee, North Carolina. Nestled amid the Appalachian mountains in western North Carolina, Cherokee holds a special, perhaps even unique, distinction among Native American territories within the bounds of the United States: It is not a reservation.

Pay no attention to the large weathered wood and white lettered sign that greets the visitor as you cross a bridge into town. According to several displays in the museum and an interpreter at the living history village, the Eastern Band of Cherokee were never granted a reservation by the American government. Rather, when the Indian Removal Act was passed and most of the Cherokee were forced to move west, the people who were to become the Eastern Band refused to go. Rather than fighting or complying, they disappeared into the hills and hid from the soldiers until the danger had mostly passed. Afterward, they gathered their money and gave it to William Holland Thomas, a white man who had been adopted into the tribe. He used the money to purchase a large tract of land in what is now Cherokee, NC and then the hiding Indians emerged. Years later, when the community was well established and the American government was more amenable to negotiating with native peoples, the Eastern Band negotiated with Washington and had their land placed in a perpetual trust, ensuring that it could only be bought and sold among members of the tribe and the federal government recognized the land and its people as a sovergn nation.

I got the distinct impression that the people of Cherokee, or the Qualla Boundary, are rather proud that their ancestors not only managed to evade the American soldiers, but that they chose their home and bought it for themselves. That they were able to remain on their own land and share it with their descendants.

That’s a pride that I admire.

I have long wanted to have a place where I could put down roots. My parents left their family home in New Jersey long before I was born and for the next fifteen years migrated between various points in New Jersey, Tennessee, Massachusetts, Maine, and Virginia. They moved for good reasons, mostly following my dad’s postings in the Coast Guard, and they worked hard to give my sister and me a good life, but the one thing that they could never ensure was that we would have a solid place to put down roots and stay.

We finally stopped moving almost twenty years ago in south-east Virginia, but despite the friends and memories I have made there it has never felt like home. Too flat. Too many hurricanes. Too miserably wet in the winter and unbearably humid in the summer.

I find myself now on a perpetual adventure. This RV is the closest thing I have to my own home and, between helping family members, avoiding areas of high COVID risk, and preparing to explore the country I find myself utterly detached from physical roots. I have home bases; friends and family who generously allow me to park in their driveway or give me a place to store my crates of books in their garage. This flat-roofed, creaky, cozy, and occasionally cantankerous house on wheels is a home that I have come to love.

But I know that one day I will need to find a place to put down roots. I need land, preferably several acres. I need a place where I can do my pottery and work on projects. Where I can improve my house in full hope that I will spend the rest of my life in that place which has become my final home. I have tentative plans and offers from multiple friends and family, some of which are likely to bear fruit and proceed beyond the realm of idle dreams.

Until then, I am content to travel and see and write.