“Listening is where love begins: listening to ourselves, and then our neighbor.” -Fred Rogers

My friends, tonight’s brew is “The Curl,” an imperial american pilsner put out by Short’s Brewing Co. And yes, I confiscated yet another from John’s birthday pack. He did ask for a sip and pronounced it “ok.” I like pilsners when it’s hot out, and since it was almost 65 degrees in February, it counts. Alas, he’s right, as he usually is. “The Curl” is just ok.

My dear readers, we last left off with Roy’s 2nd ER visit in two days. To which we made it safely, and where I asked John to do the advocating and accompany him into the room. For the sake of both our dignities, I didn’t want to risk any hospital gown flashes. Although we did have a good laugh when Roy said, “Where the hell was all this genital volume when I could’ve actually done something with it forty years ago?” I said I didn’t know, but I was pretty sure it would’ve hurt just as much back then.

I was extremely concerned about him. His color was greyish-green, and I’d never seen him so weak. I thought he should be admitted, and imagine my surprise when he toddled out with John three hours later.

“So, they actually thought you are healthy enough to go HOME?”

I could barely keep the fury out of my voice. But going home is what he wanted, and that I understood. Basically they prescribed a diuretic for the swelling, a follow-up appointment ASAP, and sent him on his way with the proverbial nurse visits. (I should clarify at this point he had great medical staff attending him through both visits…but I believe the way our f-ed up medical system works– their hands are tied to a certain extent).

What followed was him laying flat on his back 24/7, since that’s the only position he could get comfortable in, carting a catheter around (which quickly became incredibly cumbersome), and the grim reality of being housebound. Even if it was temporary, he was told it could be weeks before the swelling reduced, and “normalcy” returned. Nobody gave him a real explanation for why this development occurred in the first place, but that’s been par for the course since he got diagnosed years ago. Waldenstrom’s is so rare, there are only 3 cases per million people per year in the US. And it takes on all kinds of weird manifestations. More on this insidious disease later.

But almost worst of all, was the depression and crippling rage at the state he found himself in. He had always been the one doing the care-taking of others, and now there he was, vulnerable and helpless as an infant. Men like Roy, who are do-ers, movers, in-chargers and hard workers in particular, have profound difficulty with this. Not to mention, if they’ve been active and athletic, attractive, there’s anger and sorrow at the crumbling of their physical bodies. It’s like the normal process of aging, but on steroids. Some would call it humbling. I call it brutal.

It was then I thought of interviewing him, and translating his story to this format. I figured it would be somewhat of a distraction for both of us, and he loves to talk. I told him, “I need to get this down. Because I’m afraid your hourglass is running out.” Which made us both cry, since he wanted that hourglass to empty. When he woke up from his hernia surgery, he said to the nurse, “Why am I still here? I was fully prepared to not wake up. I want to go home.” She just smiled sympathetically and patted his hand.

I tell him he must still be here to fulfill a purpose. He agrees, but like all of us, wonders what the hell it is. So here we go, folks.

Roy was born on the south side of Chicago in 1951. He lived in an impoverished, and with the exception of his clan, mostly black neighborhood. His family included 3 older half-siblings, as his mother was widowed early in life. She’d remarried and had Roy, and his sister, Nina.

It was a chaotic, violent upbringing, the abuse coming from his father.

“My mother married my father out of sheer necessity and security. And he was nearly fifty when I came along. Unheard of at the time. Nina and I were most unwelcome gifts, and my mother took the brunt of his anger.”

As was typical in the fifties, nobody talked about domestic issues, or abuse. Ever. And divorce was out of the question. Roy attended St. Rita’s, a rigorous catholic prep school. All-boys, which he says was a terrible scenario made ripe for more abusive opportunities. However, the school was beyond it’s time in academic preparation, and he graduated in his sophomore year. Not only that, but with two years of college credit behind him.

Roy has the air of a professor about him, and a vast repertoire of knowledge. I ask him why he hadn’t pursued higher education.

“I didn’t go, because the colleges I was interested in wouldn’t accept those credits. I would have had to repeat all those horrid pre-requisite classes. Which I did well in, but who wants to do that?”

Nobody, that’s who.

“I suppose you left home as soon as you could.”

“You’re damned right. I couldn’t get out of there fast enough.”

I ask him about the armed services, and he admits he was drafted for Vietnam.

“I told my ma, there is no way I’m going to that godforsaken place. I said I was unfit to die or kill, and apparently they agreed.”

He’d shown up to where he was instructed, and after examining him, he got the exit door rather than the bus to boot camp. It’s still a mystery exactly what happened.

He’s received his share of harassment over the years for “draft dodging,” but he’s unapologetic for his feelings.

“In no shape or form was I going to contribute to the carnage taking place there. They could shoot or jail me if they wanted, but I wasn’t going.”

Where he did end up, was as an engineer working for Illinois Bell, which eventually morphed into AT and T. He was there for thirty-one years and two months. A career that had its share of ups and downs, but ended badly upon attempting to retire. Due to a lack of a contract, his pension plan was “revised.” After a furious battle, it was re-instated, and he sought refuge in his little home in Sawyer. He was able to stop working at a relatively young age due to his frugal ways, smart investing, and a very simple lifestyle.

“What about marriage?” I ask him.

“Not for me,” he says. “I knew it from a young age, from watching the shitshow in my own family. Uh-uh. No-siree.”

“You must have had relationships.”

He smiles. “Oh, I had my share of dalliances. The ladies liked me. But there was always this sense I was being used, or manipulated. I was having none of it.”

Instead, he used his time tending to his circle of friends, and exploring his deep faith.

“We used to wonder why you never entered the priesthood,” I say. “You would’ve been one of the good ones.”

“No. I consider myself if anything, a Christian brother doing the corporal and spiritual works of mercy. I could never have participated in all that pompous nonsense, the robes, kissing of rings. That’s not Jesus.”

“But you’ve lived a lot like Jesus.”

“I’ve tried. I would lay down my life for my friends, as He did.”

He gets emotional at this.

Roy knows, as many do, the crushing blow of grief when you lose those friends, whether to tragedy or illness. Jesus knew grief, too.

He is tired now, and my son calls, so we adjourn for another day.

Friendship, and transformative pilgrimages, will be the topic of our next segment. Stay tuned, and Cheers!