The Neverending Story

So: I almost died again. That’s happened before, but this time was an even closer call. And another child of mine saved my life.

This is part of my continuing memoir about health issues. I thought I was done with this story, and even titled the previous entry “This Might Be the End.” But it wasn’t.

So think of this as the post-credits sequence.

This dispatch might have a few moments that are not for the squeamish. In fact, maybe I need to post a

SURGEON GENERAL’S WARNING: The account that follows includes a lot of gross stuff. Though I’m embarrassed to share this, I feel compelled to do so, since this whole memoir is about learning to listen to our bodies, even at their most loathsome moments. Keep a puke bucket handy.

OK, to backtrack:

Eight years ago, I had knee-replacement surgery. When I awoke in the recovery room, I could tell something was different. I was numb below the waist. Nurses assured me that this would pass, but after a day, not much was passing. I couldn’t urinate, or at least not much.

I was sent home with a catheter and with a schedule of home visits by nurses. Thus began a ballet of take it out / put it back in / take it out / put it back in.

With the catheter out, I felt an overwhelming need to pee, but could not. All the catheter in’n’out introduced an infection.

I was living alone, but my ex-wife dropped in once a day to check on me, usually with one of our boys in tow. She found me once pasted to my sheets by sweat, with my teeth chattering. It was a horrible, delirious fever. She wanted me to call an ambulance but I refused.

The next time I looked up, my daughter Sarah was there. Twenty-four hours had passed but it’s as if I’d blacked out. She’d come up from Brooklyn and finally got me to the hospital and surgery and eventually to the world of self catheterization.

Lifesaver No. 1: Sarah McKeen

Sarah McKeen and husband David Tracy

That was my first sepsis experience. I had another such experience two years later, at Travis’s baseball camp.

Other times, I felt the tingles of sepsis brain fog at the back of my skull. I called my primary care physician, Dr Chu, who immediately prescribed the antibiotic to knock things out.

Catheterization was just part of my life and the process became so much a part of my routine that I could do it in my sleep. Unfortunately, I might’ve done that a couple of times. I’d be halfway through the procedure when, all of a sudden, I realized I had not put on my gloves. Or that I had not swabbed Mr Happy sufficiently before sending my tubing up my schwanz.

My medical supply company didn’t send everything I needed to self-cath, so I had to order a few other supplies. I ordered the same gloves used at my doctor’s office.

Son Jackson pointed to a line on the packaging of the gloves that noted that they were not sterile.

And so now we’re more-or-less caught up.

Savannah and her husband had moved nearby and had just welcomed their third child, Thomas, to the world just a week before my near-death.

Travis was graduating college and immediately starting a job with a global software firm an hour away from my home.

Charley was home for his final summer vacation and would finish his degree the next year.

By this point, Jackson had been living with me full time for six years. I’d tried to keep life simple by renting houses, but the owners always ended up selling out from under us. So I finally gave in and bought a house – a new house (built in 1880) by New England standards, and just right for the two of us.

I’d hosted Travis’s graduation party and Savannah had just birthed grandson Thomas when I began to feel a bit wookety.

I spent a Sunday on the couch, watching old movies. I was a Boy Scout, so I’m always prepared. I kept a saucepan on the floor in case I needed to vomit.

Still miserable at the end of the night, I trudged up to my bedroom, self-cathed, then gobbled a gummie and hit the sack.

Next day, not much change. The nausea was worse and I coated the saucepan with my bile.

Then, early evening: I felt a stirring in my gut. Jackson was upstairs. He had two rooms of the house: his bedroom and a game room and an overlarge closet (bigger than some bedrooms I’ve had), which he turned into a soundproofed recording studio. ‘Tis there where he creates the music he releases to the world under his stage name, beenz.

(To hear his album Look Alive, click here. You can also order the CD on this site.)

So I hear him upstairs and he sounds occupied, talking to someone on his headphones.

That stirring!

So I try to get up off the couch, but can’t. I have no strength. I sense my gut setting off its alarms, so I do the only thing I can do – I roll off the couch and start crawling, hands and knees, to the bathroom.

Jackson never uses this bathroom. He’s in command of the upstairs bathroom, usually littered with used towels and overflowing garbage cans. I rarely venture in there.

My bathroom, off the kitchen, is as immaculate as I can make it. It has a shower, the washer and dryer, and the usual stuff including that which I most need at that moment: a toilet.

I don’t make it.

I still can’t stand up. When I reach the bathroom, I try to grasp the sink and pull myself to a sitting position, to no avail.

And here it comes.

As awful as it was, I took solace in this fact: at least it was my feces. If I’m trapped on the floor of the bathroom with excrement leaking onto my body and clothing, at least it was mine and not somebody else’s.

(Cue Eric Idle)

And then it happened again.

And again.

Throughout this, I was wrestling with my clothing, hoping to be able to pull myself up to the toilet. But the sink didn’t help, the doorknob didn’t help and the toilet didn’t help.

But then a weird thing happened: I time traveled.

I lay there on the floor, on top of the bathroom rug, feces all around me. For the next hour – or so it seemed – I was a child again.

When I was a little boy living in Germany, I would wake in the night sometimes and go announce to my parents that I was sick. After checking me out and pronouncing me okay, my parents told me to lie down and see it my urge to vomit passed.

So I would curl up on the little green bath rug and sleep the rest of the night there. Both parents are gone, so don’t call the Department of Children and Families, you busybodies of the 21st Century. As a matter of fact, sleeping there on the little green rug for the rest of the night was tremendously comforting.

Several decades later there I was on another bathroom floor, on another bathroom rug. I’d come full circle.

Maybe this is how it ends, I thought. Here I was, pinned to the floor by the cruelty of gravity, awash in my own waste.

After an hour or so, I made another effort to pull myself up. I was halfway to a standing position when I fell again, this time slamming into the shower door. Thank God it didn’t shatter.

Still on hands and knees, I reached out of the bathroom to the kitchen cabinet where the paper towels were stored. I began cleaning my foul waste from the floor, aware that Attack Number 4 could occur at any instant.

I was weak, and I couldn’t think. I recognized my sepsis brain fog and knew I was in big trouble.

Then came the thundering hooves of Jackson McKeen down the stairs, then I heard him on the other side of the door: “Dad, what’s wrong?”

He’s not psychic, far as I can tell. It’s just that – our grossness alert is still in effect – the pungent aroma emanating from the bathroom had reached his upstairs lair.

“I’m okay,” I lied. “I’ve made a mess in here. I’m going to clean it up, then I think I’ll go to bed early.”

That was my plan: somehow I’d sleep this off.

“Bullshit!” he shouted. “You’re going to the hospital.”

“No, I’m okay. Just let me rest a little, and clean this up. I don’t need the hospital.”

“You’re an idiot,” he said. “I’m taking you to the hospital.”

He was right and I knew it. I would later recount this story to my brother, a physician, and he said: “You don’t exhibit good judgment when it comes to your own health. Jackson is your better angel.”

I wonder why that is, after all I’ve been through. But my brother was right.

I acquiesced to Jackson. “Okay,” I told Jackson, “but grab me a couple garbage bags and put them outside the door, then leave the room. I can’t leave the bathroom like this.”

“Fuck the bathroom,” he said.

“Just let me clean this some,” I said, “or I won’t go to the hospital.”

“Idiot!” he said again.

“You can help by going upstairs and getting me some clean clothes to wear.”

So I set to work cleaning up the befouled bathroom. I couldn’t stand upright, but managed to somehow get my loathsome bod into the shower stall, where I used the spray nozzle to remove waste from my legs. I had to revert to a crawl when I was done, because even if I had been able to assume a standing position, I worried I would fall again.

Jackson had gotten me a clean pair of jeans and my lucky hospital shirt. This was the shirt I’d worn to the hospital for every one of my surgeries, a tribute to Hunter S Thompson. On the front, in gonzo script, it read, “Too Weird to Live, Too Rare to Die.”

I hope the shirt would work its charms again.

I closed the bathroom door. “Do not go in there,” I said. “I will give it a thorough cleaning when I get home.”

Or if, I thought.

I still could not stand upright, so I was a human jackknife as he got me to his car. I walked hunched over and it took every ounce of strength to fold myself into the passenger seat.

On the way there, I asked him to be my interpreter. “I can’t form sentences,” I told him. “You need to be my advocate.”

Why resist the emergency room?

Partly, I always wonder if my illness is more important than a gunshot wound or an automobile accident.

Partly, I remember an emergency room visit a couple years before. I spent 8-10 hours on a gurney in a hallway of the emergency suite, listening to the screams of an elderly (i.e., my age) man who could not move his bowels.

Fuck! Fuck me! For hours and hours.

I was ready to grab an ice cream scoop and dig it out of him.

Overcrowded emergency rooms are nothing new. But when Jackson got me to South Shore Hospital that night, I was surprised by how quickly I moved through the system. The machinery was well-oiled.

Even at these moments, I could not stop being me. When I was finally taken to a private room in the suite, I was assigned the proverbial pretty nurse. I wanted to ask, “Excuse me, but shouldn’t you be selling poppies from a tray?”

But I did not.

My chronic dehydration caused a lot of problems. My veins had largely collapsed, so it took six or seven sticks before we finally got an IV going. Allie, the pretty nurse, was being helped by an aide who eventually ended up tapping a vein on the inside of my elbow.

I was dying of thirst. For once in my life, I craved water, but I was told no fluids until any tests a doctor ordered had been conducted.

I was there all night, delirious, slipping in and out of consciousness. Jackson expertly described all of my health issues from the previous decade up through the bathroom floor that evening. I faded in and out, but every time I looked up, there he was: sitting on the floor against the wall and if he slept, I never saw it.

Jackson’n’Me: The Early Years

Lifesaver No. 2: Jackson McKeen

After spending the next day in an observation suite, I was given a private room when one came available. Turns out it was on the dementia ward.

I was still unable to function. I couldn’t stand or walk. I was catheterized with a Foley catheter – that’s the one with a balloon that inflates inside – and had to use a bedpan. It was still foul. All I can say is that I will never eat Jell-O Chocolate Pudding again.

Turns out I was the victim of a double whammy. I had sepsis, but I also had something the nurses nicknamed C-diff, which is short for Clostridioides difficile. The Centers for Disease Control define it as “a highly contagious bacterium that infects the large intestine, causing severe, watery diarrhea and painful colon inflammation (colitis). It typically occurs when recent antibiotic use disrupts the gut’s healthy bacteria, allowing C-diff to overgrow and release damaging toxins.”

So I was getting it from both ends. I had been on a couple of antibiotics in recent weeks and that seeded my problems.

None of my other issues went away. The doctors took me off Gabapentin – probably trying to minimize my meds during my hospital stay. The neuropathy pain was off the charts and I could only sleep after plunging my tootsies into the ice-water bucket provided by the nurses.

Jackson with brother Travis on Travis’s graduation day

My James Brown fever (I wake up! In a cold sweat! Unh!) lasted three days. When my teeth weren’t chattering, I was a hunka hunka burning love. I got to 102 degrees, if memory serves.

I had a headache that lasted three days. I lost my appetite. I had to learn to walk again, to come to a full stand without crumpling into a heap on the floor.

Within a few days, I was able to get to the toilet on my own (with the help of a walker).

It took over a week, but finally I was physically able to be discharged.

It sounds benign, but being in a hospital bed that long damages the psyche. I was still in my mental pea-soup and so could not read or concentrate. Jackson came to see me and served as my translator. The other boys also visited.

Savannah, with her newborn, did not visit. I did not realize how contagious C-diff could be.

She’s a nurse, so when I told her I had something I never heard of called C-diff, she texted back, “Oh shit.” As I recounted my evening from the bathroom floor and how, if not for Jackson, my plan was to crawl upstairs to sleep-off my latest infection, she texted back, “You would not have woken up.”

That made me realize how close I had come. And I kept hearing my brother’s words in my noggin: “You don’t exhibit good judgment when it comes to your own health.”

So I made it home after more than a week.

I was weak and couldn’t – still can’t – do more than one thing a day. The Visiting Nurses Association checks on me every other day. We’re trying to find a better set of supplies for my daily cathing. We’ve changed some other medications.

It’s good to have a great primary-care physician in my life. Though I’m sure she’s not proud of it, Sofia Chu knows the ins’n’outs of this abandoned reptile carcass of mine.

I was lucky to be under the care of such fine nurses and physicians. Yes, I did send a thank-you card as a matter of fact

So I hope I’m on my way back.

Don’t be like me. Please use good judgment with your health.

Welcome, my friends, to the story that never ends.

Up the Ol’ Mississippi

Daughter Sarah called the ambulance over my objections, but what else could she do when I had so obviously lost control? I was suffering a cognitive malfunction (I suppose that’s a polite, clinical term for saying I was fucked up) and desperately needed help. 

This is part 45 of my Asshole blog

I barely remember the ride to the hospital, too preoccupied by what had just happened.

I was thinking I was all right, but as I sprawled on my couch with Sarah and the two emergency medical technicians and was unable to come up with the names of everyday items — keys, coffee cups, shoes — that they held up before me.

I was in serious trouble..

I’ve always been the kind of guy who doesn’t want to make a fuss and who is embarrassed by attention. I didn’t quite feel myself stepping backward into the fog (as I had when I first died years before, in New Mexico) but the inability to talk or to approach anything with reason, was scary.

At the hospital, I hoped to find out what was wrong — but also was afraid of what I’d learn.

The ambulance arrived at the hospital’s emergency bay amid lots of shouting and scrambling around by all of the nurses and EMTs. As someone who often wilts from attention — everywhere outside the classroom, where I hope for attention — I was on the verge of humiliation. There I was, inert on a stretcher, with a variety of anxious faces looking down at me, asking questions.

With my cognition so impaired — that was the scariest thing about all of this — it was Sarah who answered all of the urgent questions with an efficiency and urgency. The medical staff found her helpful in the extreme.

I was moved to a three-walled room in the emergency suite, shut off from everyone else by a curtain. They allowed Sarah in with me, and she was repeating everything she had told the EMT’s and the first-line-of-defense people at the ER. Now she was talking to the nurse who would actually be overseeing me.

I was oblivious. My head is usually a gumbo of the long-lost jetsam taken residence in my skull. At any time, I have a bubble of remembered literature floating into some long-forgotten song, as well as the images of family and the pieces of time I store, those moments that for good or ill I’ve replayed in my cranial cinema for all of my life.

But all of that was gone. My brain was empty as a white-on-white room. All things were muted. I was in the hospital bed, but when Sarah and the nurse spoke, it was if I was buried under a Kilimanjaro of pillows. The voices came from far away, traveling slowly. Seemed that a question was followed by a full minute of silence before the answer. I’d stepped inside of time and pushed at the walls, like a low-rent Steve Reeves in Hercules Unchained.

Inside this expanding time, I had trouble following the conversation until the word surgery dropped like a ripple in a pond.

Until the coming of this routine (sorry, Dad) knee surgery, I’d never feared going under the knife. I would add up the number of surgeries I’d had in my life, but I can’t count that high.

In a strange way, my previous surgeries had not only worked, but somehow provided an odd kind of comfort. It was always good to know that I would continue to function, that these trained people had opened me up, goofed around with my organs, and that I’d survived and would, no doubt, continue to live.

When the nurse left to go get some paperwork for Sarah, I turned to my eldest (and trustworthy) child, now a woman in her late 30s, and offered my contribution to the emergency-room discourse.

“Please,” I whispered. “No spinal.”

“I’ll tell them,” she said.

“That’s how this all started.”

My father was a good man and would never want to embarrass anyone, especially his youngest son. He’d never say I told you so, but I felt it. It had not been my choice to go through the knee surgery under a spinal block, but I knew I’d never do it again.

I had the usual meds, the ones that make patients relaxed and silly, and then they came to take me away to surgery.

“Who’s the doctor?” I asked. I wonder if they’d called in Clifford Gluck. He was the urologist I’d first seen a couple of years before, when this whole health walkabout began. I visited him  to see how it would go if my vasectomy was reversed and I would procreate again. 

And then everything happened — cancer and all of the stuff that followed.

“It’s Dr. Tracy,” the nurse said. He’s the urologist on call. 

“My urologist is Clifford Gluck,” I said. “Shouldn’t we call him?”

(I’d never felt so old as I did at that moment when I said my urologist.)

“We don’t have time,” the nurse said. “Dr. Tracy is on duty.”

I did not meet Keith Tracy, my new urologist, until after the surgery. He was a busy guy that day.

I’m not sure about what they did during that surgery, but I came to afterward, back in the same room. Before I opened my eyes, I heard the soft sounds of fingers on keyboard.

Was I writing in my sleep?

When my eyess opened enough to focus, I saw Sarah sitting next to the bed, working on her laptop. She is an artist of multi-tasking. 

She has a demanding and rewarding job in New York, yet kept up with her work while managing our part of the surgery. She hadn’t even had to take a day off. That’s the McKeen work ethic in practice.

I’d have to spend the night in the hospital, but I felt I was recovering well enough for Sarah to leave. I insisted. I felt like I’d disrupted her life enough. Besides, Nicole had volunteered to help if I needed anything.

My room was comfortable, like all of the accommodations at South Shore Hospital. Too bad hospitals don’t give points for each stay. I would have earned a few medical vacations.

If my brain hadn’t been so exhausted, I’d try to recall all the nights I’d spent at South Shore. But I was too tired.

I settled down into the hospital routine. You actually don’t get a lot of rest in the hospital, since you are awakened every couple of hours for them to test vital signs. Plus, I was catheterized, so the nurses also had to keep track of my urine bag.

The day after the surgery, I met my new urologist, Keith Tracy. He was an affable guy, probably about half my age. 

He talked a little bit about the procedure, but he buried the lead, as we say in journalism.

“We came close,” he said. “You were about 20 minutes away from being dead.”

I had sepsis. I knew little about it, but I knew it was serious shit. Thank God for my iPhone. The often moody Siri overcame her grudge against me and offered this definition:

Sepsis is a life-threatening condition that occurs when the body’s immune system overreacts to an infection. This overreaction can lead to widespread inflammation and organ damage. It is a systemic infection with life-threatening organ dysfunction .

From the Cleveland Clinic

So after a few days in the hospital, I was sent home. There was a catheter with a tube down my leg that led to a bag that I had to change now and then.

I could never tell when I was urinating. It was like a tap, turned on all of the time.

I thought, I could live with this. But I knew things were more complicated than that. Of course.

In my follow-up visit at Dr. Tracy’s office, he had one of his nurses show me how to self-catheterize. (Self-cathing as we say in the trade.)

This was tough. First, I had to wash my hands, then put on rubber gloves. Then I had to clean Mr. Happy with an alcohol wipe. Once that was done, I had to face the catheter. It was a plastic tube, about a yard long.

That’s right — a yard. Thirty-six inches of plastic tubing. 

Imagine: you insert that thing up the Ol’ Mississippi and it pulls all that pee from your bladder that doesn’t come out the usual way. 

You use a lubricant, like KY Jelly, to limber up the catheter, and you add a little bit to the crown of Mr. Happy’s head, to make for smooth sailing as the tube is inserted.

For all of your urological needs!

There are many adventures on the journey. At a certain point, the tube has to negotiate its way past the prostate gland. This requires an intake of breath and holding of same. It’s kind of like the Jungle Cruise at Disney World. Once we are safely past the rapids (prostate), we wait for the tube to drop into the pool of urine.

Stop immediately when the flow begins. Push too far and you piss blood. (That happened on several occasions.)

I’d always hated catheterization. I remember my first surgery, a hernia operation when I was 20. The nurse (a male, but insensitive to this procedure) seemed delighted to shove what I was sure was a garden hose up my willy.

That was miserable and peeing was painful for days afterward. From that point on, I asked nurses to delay the cathing until I was under anesthetic. I feared cathing more than any surgery.

All of this happened as the school year was beginning. My administrator and good friend, Sarah Kess, had been managing the office in my absence. There was some concern in the college administration about whether I could return or whether I’d need another medical leave.

I was determined to get back in the classroom.

I was not ready to return immediately, so Sarah K (the K is my Kafkaesque way of keeping her straight from my daughter, Sarah M) covered my classes the first week. She mostly told the students I had had a medical emergency but that I would be back next week.

I wondered if maybe I did need a medical leave. When I looked in the bedroom mirror I didn’t recognize me. There was a haggard, elderly man in my room. Who is that dude and how did he get in here?

But let’s go back a bit, back to when I was still wearing the nurse-installed catheter with the tube down my leg into the bag of whole goodness attached to my ankle. 

Dr. Tracy’s nurse had not yet taught me to self-cath when I made it back to the university. I still had the bag at my ankle, still had to visit my urologist’s office to get the catheter replaced every other day.

I was moving slowly. As often happens after surgery, the primary feeling is of fragility, not pain. And that’s what I felt. I used my cane and treaded deliberately. 

What could be sexier than walking around with a urine bag on your ankle?

Thank God for public transportation, which saved me hundreds of steps. I took the ferry from the next town over, Hingham. It was a quiet, often beautiful ride and afforded time and atmosphere for cat napping. 

When we arrived at the dock, there was a short walk to the subway. There was one transfer and then the subway came above ground and conveniently stopped in front of my building. A wee bit of hobble and I was at my office door.

That would seem to be a full-day’s work, just getting to the office, but my duties were only about to begin.

When Sarah K saw me, I could see myself in her face. She seemed wary and concerned.

“Are you sure you’re ready to come back?”

“I’ve got to do it sometime.”

I sank into the chair across from her desk, where we habitually indulged in our morning debriefing sessions. Those were often the highlights of my day. I know few people with such a terrific sense of humor.

“You look gaunt,” she said. That was my rare moment of joy in those days. Overweight most of my life, I’d longed to be gaunt. Later, Sarah said it would have been more accurate to tell me that I looked near death. Because I was — or recently had been.

My first class was upstairs — and in the same building. I scored on that one, meaning I wouldn’t have to drag my sepsis ass down Commonwealth Avenue to some basement room without windows.

Just one floor up, but I needed to use the elevator.

When I got to class, the students were already there. I made my way to the front of the room.

“I’ve had some health issues lately,” I said. “Would you mind if I sat?”

No one objected, so my carcass collapsed in the chair at the instructor’s desk.

The class was Literary Journalism, something I’ve taught with great joy and relish for decades. I love the subject, so I spent that first day giving the class the lay of the land and getting them stoked — I thought — about journalism that could endure and become art.

I could feel that I was not all there. It’s as if the sepsis had left scar tissue on my brain. I was still not able to retrieve the words I wanted from my skull. But at least I was much improved over my halting, stuttering performance with the EMTs.

Class was a three-hour block, but I asked if we could end early. No one objected.

“Thank you,” I said. “Does anyone have any questions?”

A hand shot up in the second row. “Yeah,” a young woman said. “Are you going to live?”

Good question. I didn’t laugh it off. I told her I’d do my best.

Class over, I moseyed down to my office where I again planted myself in the seat across from Sarah K’s desk.

I told her more catch-up stuff and then ended with what the student had asked in class. I intended that as my closing line of the update, some comic relief.

But Sarah did not find it funny. She urged me to take care of myself.

Then it all hit me: the cancer, all of those medical procedures, my divorce, not seeing the kids daily, my mother’s death. I thought of all of the humiliations I’d had because of my health condition. I’d gotten through it all, but now I had to face this: the self-catherization. This was it. This was the low point of humiliation. I was at the bottom, clawing to get ever deeper.

I had met my limit.

Poor Sarah. She came to work that day to do her job and now there was a blubbering old man in her office. 

I was done. This was it. “I can’t take it anymore,” I told her, choking out the words.

And, for one of the rare times in my adult life, I cried.