The agony and the joy
In my solitude
Pixabay
Introduction
“There are men who can drink vodka, and men who can’t drink vodka but still drink it. The former get pleasure from the agony and joy, and the latter suffer for all those who drink vodka without being able to drink it”.
How things were done in Odessa, Isaac Babel.
The team deals with aging parents.
There is a pale moon over Venice beach.
We greet a new anti-design pattern: Solitude.
Back to the USSR
They grew up in Tomsk, Siberia. Tomsk's claim to fame was being a Soviet science city with 6 universities and 100,000 students. Their parents were professors at Tomsk Polytechnic University. Yelena studied propulsion engineering after high school. Sergei, who decided that he was too smart to join the university prison system, became a professional gamer.
A week after they met at a club on Lenin Avenue, Yelena and Sergei decided to leave Siberia and move together to California.
They were now living the California dream after 2 years of bone soup and potatoes in Brighton Beach.
I won’t waste your time telling their story again. If you feel like it, you can go read it.
This story is not about Sergei and Yelena, it is about Irina and Alexander.
Lena’s mother Irina was a professor of materials science and her father Alex, professor of navigation systems. Ira and Sasha met at Tomsk Polytech. They fell in love over a problem in a linear programming class. They had published over 500 papers between them over the years. Prof. Ira Kofer had 3 PhD students and was actively publishing work in her field of interest - metal stability in ultra-low temperatures in space.
Sasha was diagnosed with Alzheimer disease last year. Ira was very devoted to Sasha and felt she could deal with Sasha forgetting her name occasionally. His treatment with Novomedica MIOREOL seemed to help.
That was all about to change.
Recently, Ira started having stiffness in her movement and a mild tremor in her extremities. She went to their doctor. He diagnosed her with Parkinson’s Disease and prescribed Levodopa..
After a month on Levodopa, Ira started having swallowing issues and began to doubt her diagnosis of PD. After reading the medical literature, she went to a professor of neurology at the SibMed University Hospital who diagnosed her with MSA.
Multiple System Atrophy (MSA) involves the degeneration of nerve cells in the basal ganglia, cerebellum and brainstem. This degeneration affects the body's movements, balance, and autonomic functions.
Cognition is unaffected by MSA. The patient understands she is dying as speech, movement and autonomic function shut down, but can hardly express herself.
Ira called her daughter Lena in California. 14 hour time difference from Siberia to the West Coast.
7:00 AM Lena’s phone rings. It’s her mama.
Lena, “Mama, how are you? Is Papa ok?”
Ira, “Lenushka, Papa is fine but you know, he has Alzheimer’s. So far he’s ok. I have some news myself”.
Lena, “Mama, what kind of news?”
Ira, “I was just diagnosed with MSA”.
Ira gives Lena the short version of the diagnosis and leaves out a critical piece of information, which Lena notices as she Googles MSA in real-time.
Lena, “Mama, how long do you have?”
Ira, “5 years, perhaps 7. The disease seems to be progressing quickly. I have problems with doorways and when I get out of bed, my blood pressure drops. Yesterday, I almost fell while getting up from bed.
Lenushka, I need you to come help me. I can’t do this myself. There is a lot of work we need to do. We need to adapt the apartment for our special needs and develop our treatment plans”.
Lena, “Of course, I will wrap up things here and come next week. We will do this together”.
The Venice Gym
Bob had his 6:00 crossfit class with Sol. Sol, the fifth daughter of musical hippie parents, was a cheerful, high energy, full of life trainer. Pushing them to the edge but careful with their safety. By 7:00 Bob was beat.
Bob walks out into the main gym area, looking for Alice. No Alice. He hangs out a bit. Funny - she had been coming in around 7:05 the past couple of weeks. He debates if should text her or call her or not. Torments himself for a few minutes. He wants to hear her throaty, alto voice, but is afraid she’ll think him pushy. After 5 minutes of internal back and forth, he just leaves. Do-nothing strategy. He walks out at 7:16.
Alice had a 7:30 yoga class with Sol and was running late.
They collide on the street outside the gym.
Alice, “Hey”.
Bob, “Hey”.
They turn to each other for a moment without talking.
From the street, they can see the ocean, the blue water of the Pacific, little toy flags on sunken masts, and a pale moon overhead.
Alice breaks the silence, “It's not the pale moon that excites me”.
Bob, “The Nearness of You”.
Alice, “Hoagy Carmichael, 1938”.
Bob, “It's not the pale moon that excites me. That thrills and delights me, oh no, It's just the nearness of you”.
Bob and Alice singing quietly together.
“It isn't your sweet conversation
That brings this sensation, oh no
It's just the nearness of you”.
In My Solitude
This is not really a tech startup anti-design pattern.
This isn't about mistakes made by early stage tech startups. It's about something else.
My mother had MSA. My father took care of her. It made me think.
In tech, we chase what's new. We forget things. Like getting old. Like our parents needing us. We talk about generations at work but forget the ones at home.
Being a CEO is hard. It's lonely. It's the same when your parent is fading away from something like MSA. That's hard and lonely too.
This is for us, the sons and daughters. And for our parents. No matter where. No matter what.
In My Solitude
In my solitude you haunt me
With reveries of days gone by
In my solitude you taunt me
With memories that never dieI sit in my chair
Filled with despair
Nobody could be so sad
With gloom ev’rywhere
I sit and I stare
I know that I’ll soon go madIn my solitude
I’m praying
Dear Lord above
Send back my love
“(In My) Solitude” was composed in 1934 by Duke Ellington, with lyrics by Eddie DeLange and Irving Mills.
It appeared on Billie Holiday Sings, on the new vinyl LP format, Lady’s first full-length album, released in the United States by Clef Records in 1952. It was reissued in 1956 by Verve Records with four extra tracks recorded at the sessions, and renamed Solitude, for what had become a signature song for Billie.
On a park bench
Bob and Mark are sitting on a park bench on Ocean Avenue looking at the ocean.
Bob was the one who started.
Bob, “So, you think we’ll live forever?”
Mark, “That’s the plan, right?”
Good. I liked this. You're starting to connect the dots between what we do, the decisions we make, the superficial crap, and what's really going on within. Keep going!