I’m only now starting to fully understand is that this is an inside job. It only works if I believe.

But what I’m only now starting to fully understand is that this is an inside job. It only works if I believe. I’ve always been confident, positive, doggedly determined; but doubt is beginning to mitigate my conviction. Who am I to think I can accomplish this, when so many have struggled with similar setbacks; some with Parkinson’s, some with the aftermath of spinal surgery? I may be the only one who has taken on this particular two-headed beast…

I have to learn to walk again; to reclaim my mobility, remaster my motion. I consider this fundamental to my therapy —  for me, it all starts and ends with walking. And I understand that it’s more complicated than that. So many tiny disciplines have to be observed, and neglected muscles and ligaments need to be restored. I’m exhausted by the effort I’ve already put in at Johns Hopkins, and daunted by how much work I still have to do. It’s like being nibbled to death by ducks.

Back in the days of carefree ambling, I would have considered the topic of walking to be rather pedestrian. Now the acts of stepping, strolling, hiking, and perambulating have become an obsession. I watch Esmé gliding through the kitchen, grabbing an apple while opening the fridge door for a coconut water, closing it with a quick shift of her hip and pirouetting out the swinging door at the other end of the room. Down in the lobby, my neighbor and her daughter are quickstepping to catch a taxi. I spy on a man walking with a slight limp, which he counterbalances with a bag of groceries. I secretly watch the way they all move. Easy, breezy, catlike, or with a limp, every one of them is far better at it than me. It may be that the most difficult, miraculous thing we do, physically, is to walk…

It’s tough. With PD and the aftermath of the surgery, something as simple as remaining upright is often sabotaged by a rogue army of misfiring neurons. I try to stay organized. I have memorized a litany of admonitions, not unlike my golfer’s list of swing thoughts: Keep my head centered over my hips; hips over my knees; no hyperextending; stay in line with my feet; eyes forward; shoulders back; chest out; lead with the pelvis. All of this kinetic vigilance can dissolve in a nanosecond of panic, or come apart with some other distraction. A tiny nervous jolt or spasm, and like a house of cards in a sudden gust of wind, the only messages that make it through the debris are: Don’t fall. Don’t fall. Don’t fall

—  Michael J. Fox, No Time Like the Future: An Optimist Considers Mortality (Flatiron Books, November 17, 2020)

Monday Morning Wake-Up Call

I started listening to this book on Audible during my morning walk last week. I had just completed the introduction and told Self: “This is a book you’ll never forget.

And YOU will likely say, why should I bother. Or as a line from Nestor’s intro says: “But why do I need to learn how to breathe? I’ve been breathing my whole life.”

Exactly what I said.

Now, I can’t get this book out of my head.

Every breath, a gift.


Excerpts from the Introduction:

“90 percent of us—very likely me, you, and almost everyone you know—is breathing incorrectly and that this failure is either causing or aggravating a laundry list of chronic diseases… This work was upending long-held beliefs in Western medical science. Yes, breathing in different patterns really can influence our body weight and overall health. Yes, how we breathe…

This book is a scientific adventure into the lost art and science of breathing. It explores the transformation that occurs inside our bodies every 3.3 seconds, the time it takes the average person to inhale and exhale…

It will take the average reader about 10,000 breaths to read from here to the end of the book. If I’ve done my job correctly, starting now, with every breath you take, you’ll have a deeper understanding of breathing and how best to do it. Twenty times a minute, ten times, through the mouth, nose, tracheostomy, or breathing tube, it’s not all the same. How we breathe really matters…

By your 3,000th breath, you’ll know the basics of restorative breathing…

By your 6,000th breath, you will have moved into the land of serious, conscious breathing…

By your 8,000th breath, you’ll have pushed even deeper into the body to tap, of all things, the nervous system…

By your 10,000th breath, and the close of this book, you and I will know how the air that enters your lungs affects every moment of your life and how to harness it to its full potential until your final breath…

By the law of averages, you will take 670 million breaths in your lifetime. Maybe you’ve already taken half of those. Maybe you’re on breath 669,000,000. Maybe you’d like to take a few million more.”

James Nestor, Breath: The New Science of a Lost Art (Riverhead Books, May 26, 2020)


Notes:

T.G.I.F.: Freedom

“I was reading Kierkegaard while waiting to pick up my children from school. I wished I could wave some mother out of her idling vehicle and show her the passage. Reading, however, is a kind of private freedom: out of time, out of place.”

~ Yiyun Li, Dear Friend, from My Life I Write to You in Your Life

 


Photo: Elena with Reading

Some days I am very raw, as though my outer layers have been peeled away

Some days I am very raw, as though my outer layers have been peeled away, exposing the new parts of myself to the wind and the sea spray… I feel very sensitive to different consistencies of light. The speed of the wind. The pull of my clothes against my arms. Everything has a texture. I had stopped noticing it. I have a new pleasure in holding objects. A cold, round apple is solid in the palm of my hand. I stroke the smooth, hard squares of Scrabble letters. I run my fingers over the rough wooden surface of the table. I wonder if this is how my mother felt when we came here during those long, brooding summers.

~ Jessica Andrews, Saltwater: A Novel (Farrar, Straus and Giroux, January 14, 2020)

I loved it. Recommended for you? Hmmmm. Read a Kindle sample to get a taste.


Notes:

Read: Dear Edward

Just before lunch service, Veronica takes a short break in the front corner of the cabin, next to the kitchen… Wind is what she misses most, up in the sky. The airplane air isn’t as bad as passengers say it is; she never likes when people spout opinions without bothering to gather the facts first. Airplanes take about 50 percent of the air collected in the outtake valves of the passenger compartment and mix it with fresh air from outside. The air is then passed through filters to be sterilized before it’s introduced to the passengers. So the air on the plane is clean, and not worthy of complaint, but still, Veronica can taste the effort in it. Every time she leaves an airport, she appreciates the unpredictability of each inhale. There might be a soft gust of wind, or the smell of popcorn, or the heaviness that precedes a rainstorm. She notices nuances in the air that everyone else is immune to, with the exception of submariners, probably, and astronauts. People for whom the earth is not enough; their freedom is off the ground. Veronica enjoys the unbridled nature of the outside world in small doses, but this is her home. She is the fullest version of herself at thirty thousand feet.

~ Ann Napolitano, Dear Edward: A Novel (The Dial Press, January 6, 2020)

Highly Recommended.


Notes:

Sunday Morning

I want to be a monk because I think that would be a very good use of me, he continued. Does that sound strange? It sounds a bit arrogant, I suppose. I don’t mean to be arrogant. I want to be an implement. Something like a shovel with a beard. If I live with humility and intent, if I do what I do well and gracefully, that is good. Beyond that I cannot go. When I speak to children they will ask me things like, if I do enough good, and other people do good, then the good stacks up, right? and the good eventually beats the bad, right? and I cannot say this is so. I am not very interested in speculation about such things. I was never interested in theology. I think theology is an attempt to make sense of that to which sense does not apply. I cannot explain why I hope that what I do matters; all I can do is do what I do, either well or ill, patiently or not, gracefully or not. And I do find that doing things mindfully, patiently, easefully, makes the task far more interesting. I love to cut the grass here, for I sometimes come to a sort of understanding with the grass, and the hill, and the creatures in the grass, and with my legs and arms and back, a sort of silent conversation in which we all communicate easily and thoroughly. Do you have any idea of what I mean with all this?

~ Brian Doyle, from “Because It’s Hard” in “One Long River of Song: Notes on Wonder” (Little, Brown and Company, December 3, 2019)


Notes:

Move it up. Top of your list. Now.

She was, quite simply, a nice lady who’d raised a family and now lived quietly with her cats and grew vegetables. This was both nothing and everything.

~ Gail Honeyman, Eleanor Oliphant Is Completely Fine.

 

 

Look at you: You are no accident.

Your face: the eyes…the line of your nose; that lickerish mouth, one moment tight with fear, overtaken the next by fountainous laughter … Always faces, tens of thousands across a career, each one made up of countless micro-expressions that register everything; more liminal than a blood test, less decisive than a lumbar puncture, but meaningful all the same…

We are skull-jumpers; there is no limit to our identificatory capacity. Your face, voice, breath continue their unfolding, each now different from the last, changed beyond recognition in the two hours since we first met. Looking: more intimate than any physical examination. The voltage switches once more, symptoms pooling between us, tributaries of some larger untold story…The intensity of neuronal activation is processed through deep limbic structures, and when intensity exceeds a genetically defined threshold it leads to activation of the autonomic nervous system, triggering unconscious automatic changes in cardiovascular and respiratory systems—readying us to fight, to flee, to freeze, to love. We are sensitive; we have no choice. Look at you: You are no accident.

~ A. K. Benjamin, from his new book titled Let Me Not Be Mad: My Story of Unraveling Mind (Dutton, June 11, 2019)


Notes:

Sunday Morning

Why is it any more ennobling for someone to claim to be a person of faith rather than a person of doubt? I like people of doubt. I like people who question what the hell is going on. St. Thomas is my favorite apostle, even if he was wrong. Galileo smelled a rat, and he was right. It doesn’t matter what you believe; it only matters how you behave. Or as it so succinctly says in Christian scripture, “Faith without works is dead.” Believe what you like, but this is what I believe. God, if there is one, speaks and expresses Herself through a group of people who the great becardiganed philosopher Fred Rogers called “helpers.” […]

Helpers are people who try to make life more bearable for those who are suffering. They are people who try to clean up the mess, are tolerant of the weak-minded, and resist those who would exploit others for their pleasure or profit. […]

So if I have a religion it’s in appreciation of helpers, whoever they happen to be at the time. I’ve tried not believing in God, but that’s just as hard as swallowing all of the liturgical mumbo jumbo. I don’t know who or what composed our universe, but I’m not sure that matters anyway. I suspect that any real spiritual peace lies in simply being a decent human being. Or at least trying to be.

~ Craig Ferguson, from “The Helpers” in Riding the Elephant: A Memoir of Altercations, Humiliations, Hallucinations, and Observations (Blue Rider Press; May 7, 2019)


Portrait: AT&T Performance Arts Center

Plook

By 4:30 the following morning, when I got up…a massive zit—or “plook” as they are known in the common parlance of my people—was threatening beneath the skin on the tip of my nose. It was not yet visible to anyone else…

“Yuv goat a plook,” he told me, helpfully, in his urbane Falkirk accent. The mere fact that he had spoken at all was an indication of the magnitude of the problem. Bob was not given to personal remarks.

Ignoring the bustle of the kitchen where my brother and sisters were having breakfast, I headed to the bathroom to see what I was dealing with. I have never encountered anything like it to this day. Jim Henson’s Creature Shop or Lucas’s Industrial Light & Magic would be hard pressed to re-create this pus-filled behemoth. Technically it was one plook, but it had three heads. Three creamy peaks that looked as though they could erupt at any moment. The slopes of this organic mountain were greasy and bloodred. It seemed to pulse or throb. It was as if it had a life force all its own. It was a sentient being. A demon plook visiting this realm to consume and destroy. The Cthulhu Spot. Voodoo Acne. Black magic was upon me.

I knew I must not touch the beast, but I couldn’t help myself. My index fingers approached it in the familiar pincer movement and almost before I made contact it burst into a cascade of foul custard, splattering the mirror with its first ejaculation, then oozing like a river of smooth vomit from the end of my nose. Now I was committed; the dam had been broken and I had to see this thing through to the grisly, bitter end. My fingers squeezed tighter and the pressure produced more of the foul lava, mixed now with fresh red blood—runny sunny-side-up egg yolk and ketchup. The pain was excruciating, but I didn’t care. It was that fucker or me. My eyes ran with tears as I milked and squeezed and pressured and wrestled until all its revolting innards lay across the bathroom sink, an abstract postcard of hell.

I felt the momentary satisfaction of besting a formidable and hated enemy, but very quickly the remorse set in. I squeezed the giant red stump on the end of my nose to see if somehow that would remove it, but I was just pouring gasoline on the fire. All that I was doing was creating more swelling. I looked in the mirror at the damage and knew that I could not possibly be seen in public like this. I could not go to school. I would become an outcast, ridiculed, rejected, and despised. There was no way Dawn Harrison could see me in this state. It was too early in our relationship. We hadn’t even started a relationship. Had we been married fifteen years it would have been too early in our relationship. I could not even be seen by my siblings or my parents. My nose, or what was left of it after the Battle of Poisoned Boil, was three times its normal size and the bright vermilion red otherwise seen only on a baboon’s anus. It was an extreme emergency, so I had to do what all resourceful schoolkids do in such situations. Feign diarrhea.

Normally my mother would not have bought such an obvious con to stay off school, but the desperation in my voice sold the swindle, or at least convinced her that I wasn’t just faking. She handed me a glass of water through the door, which I opened sufficiently to let her see my face. “What happened?” she whispered, looking at my nose in awe.

“I squeezed a plook and it kind of went bad.”

~ Craig Ferguson, Riding the Elephant: A Memoir of Altercations, Humiliations, Hallucinations, and Observations (Blue Rider Press; May 7, 2019)

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