“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!

“The connections we make in the course of a life–maybe that’s what heaven is…” Fred Rogers

Hello, friends. As they say in the South, “It’s been a hot minute.” I think this phrase can refer to a plethora of things…in my case, it’s writing, and anyone other than my handful of loyal folks reading my writing. And this minute finds me drinking “Devil Dog,” an oatmeal stout put out by Roak Brewing Co. in Detroit. I stole it from my husband’s birthday gift beer collection, but no biggie. It’s not his favorite style. It’s good, though. Chocolatey-malty, nutty. Here’s hoping my belly won’t protest, after mixing it with the 800 mg ibuprofen ingested a few hours ago. I’ve been worried out of my mind for my eldest son and a medical emergency involving bowels, but in reality I’ll be the one to probably need a new stomach lining in the near future. Ah, well. I hope you’re not squeamish with bodily functions, before reading further…

About that writing. I decided to take a break from my failing fictional attempts and come here instead. You know that advice, focus on others to get your head out of your ass? There is something to that. And for better or for worse I’ve witnessed a friend go to hell and return, to help me remember what to concentrate on. Occasionally we really need the reminder. So, thank you, Roy. And buckle up, readers. With his stated permission, I’m going to tell (some of) his story, in a few segments. I’ll start with some recent events and go backward, then circle back again. I hope I can do it (and him) justice.

Roy P. Thompson lives in an adorable gingerbread-like house a few hundred feet away from me. Husband John and I met him when we built our own home back in the nineties. I got to know him even more when I realized we were attending the same church, and we were both active there in different aspects. A lifelong bachelor, Roy was a greeter, a scripture reader, a Eucharistic minister, a leader of the church’s men group. And a tireless helper. I saw him as the model of what the catholic church supposedly sought from us: good works in every form. He spent countless hours tending to ill or compromised parishioners, whether it was driving them around or helping them settle affairs. We even carpooled together to attend volunteer hospice classes…which I recommend everyone take. You think you know a lot about death and dying–until you show up at a house and the wife tells you where the diapers and wipes are if her husband soils himself. I choked back the words, “I, uh…we’re not trained to do that…” as the exhausted woman slipped out the door for a one hour reprieve and I fervently prayed her partner had a bout of constipation. Much as we respected the organization, the association with hospice was short-lived for both of us. As fate would have it, he would come in contact with them later for very different reasons.

I truly enjoyed (and still do) Roy’s witty intelligence and company, and admired his selfless dedication to those in need. He also became a lifesaver when I needed a solution to early morning care for my then-elementary-aged kids. There was about a one hour gap between my having to leave for work and the school bus arriving, and I didn’t want them to be alone. I asked him if he’d be willing to pop over and chaperone. Thankfully, he said yes, and I think it was one of those win-win situations. Not having his own kids, he liked the boys and vice-versa. He has watched them grow up, been a part of their celebrations, and a cheerleader to all.

The years flew by, as they will. We did what caring neighbors do: got the mail and watered plants on vacations, spent a few holiday dinners together, laughed and cried at shared grief, and I always had a willing recipient for my baking and cooking extras. Along the way Roy received a rare cancer diagnosis by the name of Waldenstrom’s (seventeen years ago, believe it or not…but more on that later). Although he had many associated challenges involved with a terminal disease, in general he was doing okay.

Until a few months ago.

For some time, Roy’s belly had expanded unnaturally, to the point he was in a constant state of feeling like his innards were going to spill out. He was in pain and embarrassed at his physical appearance. Doctors were typically dismissive, and this past summer as I was taking him to the first of a few ER visits, I said: “Roy, some type of surgical intervention has to be done. This is cruel, for you to be in this kind of agony.” And he’d say he was a hot potato. Nobody wanted to deal with the liability of treating or operating on him, because he’s in the end stages of his condition. And he was literally praying for every day to BE the end. I felt terrible hearing this, but who could blame him? These are the times when you question who’s in charge of the universe. Here is a guy who, while far from perfect, had devoted himself to helping others, and this is the reward? Years of discomfort, uncertainty, deep loss, loneliness? But, I digress. More on spiritual conundrums later…

Finally, he had an appointment with our mutual neighbor Pamela Klint, a physician assistant. She took one look at his “hiatal hernia,” gasped, “Oh, no, Roy,” and made the surgical intervention happen. Thank God.

However…it was a downhill nightmare (until a week ago) ever since. He had the hernia repaired, but with it came the unexpected event of swelling so extensive he couldn’t urinate. As in, totally blocked. I was appalled they had merely kept him overnight after the surgery, and sent him home, with twice weekly nurse visits. So we went to the ER, where they put a catheter in and pretty much said it was a post-op side effect. The next day was January 14th, Roy’s 73rd birthday. I brought him some cake and of course, wanted to check to see how he was doing. He opened the door. Unsteady and a wild, panic-stricken look about him, he hobbled around with a wide stance, his legs splayed as if he’d ridden a horse too long.

“Ellen, I’m not better. The swelling has doubled. I now have twin cantaloupes where my balls used to be.”

Me: “Oh, no.”

“I want you to look. I’m not trying to be weird or inappropriate. Just take a quick look and tell me if you’ve ever seen such a frightful sight.”

This was a man I’ve known for more than twenty-five years, a man I would trust with my life, but I’m not of fan of looking at anyone’s nuts, even on a good day. But he is sick and scared, and I feel awful for him. I say, “Just tell me if it’s worse than yesterday.”

“It’s worse. You can see, I can’t even walk, that’s how monstrously huge and grotesque they are.”

This really isn’t an odd of an exchange as it sounds. Funny, yes, because we have to laugh. Due to the predator-like nature of his cancer, which is slowly attacking his internal organs, Roy and I have had dozens of conversations centered mainly on urinating, defecating, and now, his malfunctioning package. That’s what chronic illness does to you. It reduces you down to where you’re nothing but your deficient parts. If you’re not laughing, you’re definitely crying. And that’s okay too, I tell him.

Back to the scene…

“Okay,” I say. “I find it hard to believe this is normal “post-op” swelling. You said your (home health care) nurse is supposed to come later. See what she says and call me. We’ll take you back to the hospital if you want.”

As it turned out, the nurse didn’t show because they don’t work on MLK’s birthday. So…on the snowiest, iciest day of the year, Roy donned a robe that made him look like the Star Wars villain Darth Sidious (he was about as furious as him by that point), climbed precariously into our car trying to balance a catheter bag and horrifically painful, oversized testicles… and off we went to the ER yet again.

Stay tuned, ya’ll, this saga is to be continued….