July 2024 Life Updates: A Sick, Sad Summer

Summer 2024 life updates, including information on my stepdad's terminal cancer; progress on my never-ending methadone taper, which I've nicknamed the Arduous March (à la Kim Il Sung); plus, Jay's fiancé visa and our plans to relocate.

Summer dinner al fresco with Lou (my stepdad) on the left followed by me, my close friend Andrea, and my older brother, Stephen. We live in the Great Lakes region of Upstate New York, which is replete with wineries; picturesque little lakeside towns crowded with boutiques, restaurants, and parks / museums / libraries; plus, so many great hikes that you could spend your entire life hitting the trails around here and never run out of fresh options.

Note: I visited with Lou yesterday afternoon. At that point, he was uncomfortable, but he was still himself.

Shortly after I published this post yesterday evening, Lou lapsed into unconsciousness.

I passed a peaceful night in the chair next to his hospital bed, which we had set up in my mom's sunroom. I gave him his medications using an oral syringe at 10, 12, 2, and 4.

My mom woke up in the middle of the night to spend a couple of hours beside him. She lowered the bed's safety railing so that there wasn't any barrier between the two of them.

There was a light breeze, and the sky was a beautiful indigo when the sun began its long journey this morning.

I went to check on Lou one final time before I left for the clinic at six a.m., and I discovered then that he had passed on.

Rest in Peace to one of the finest men that I have ever had the privilege to know.

I'm so far past exhausted that my vision is strobing and shuddering.

Lou, my stepdad, is dying in the next room.

There is an oxygen machine at the foot of his hospital bed that makes a sound like an air compressor.

For decades, Lou ran a family business that sells custom hardware for industry.

Now, near the end, he hallucinates construction projects. From time to time, he asks me whether the lumber has arrived and if the tiles are ready to be laid.

"Don't worry about a thing, Lou, " I reassure him. "All of your projects are right on schedule."

***

Lou is the picture of a middle-class business owner in suburban America.

He's an honest, reliable businessman who is a fixture in his community; an easygoing, humorous guy who is quick to crack a joke, to forgive, and to show up on the doorstep of any friend or family member who has a weekend reno project and could use an extra set of hands and a sixpack.

None of this diminishes the fact that he is dying a king's death.

People have flown in from all over the country to pay their respects.

They hold his hands and say sweet, sacred, private things. They thank him for being there for the parties, the trips, the high points; then they hug him and thank him for staying by their sides during the depressions, the deaths, and the divorces, too.

I have gone yearslong stretches of my life without crying. These days, I've wept every single day.

***

Lou healed a great many wounds that our family had sustained.

I've mentioned before that my mom and dad are intense people. Opinionated, sometimes even judgmental; rigid in their views and ways of doing things; fearsomely intelligent and hypercompetent when it comes to their careers.

My mom needed someone like Lou to balance her out. Someone who was laidback, unintellectual; someone who was almost childlike in his simplicity and humor, at times.

Lou brought out a completely different side of her.

This is one of the great miracles of love, I suppose - that the eyes of the lover are like mirrors for showing the rest of the world the best possible version of the beloved.

The grafting together of the family trees had other benefits.

Neither of my brothers has children (yet), but Lou's daughter has a young son who recently lost his dad in a hunting accident.

So, my mom became a grandmother. Another hole filled in; another gap soldered.

***

Lou taught me how to paint, to drill, to drywall.

He showed me how to balance a Bacardi and Coke in one hand while I varnished baseboards with the other.

He demonstrated how to wield power tools in such a way that (most of the time) blood didn't come gushing out of me afterward.

Lou was such a gentle, capable teacher.

He taught me about a great many practical things.

Without ever giving me an iota of advice - simply by showing me how he lived his life - he instructed me in far more important matters, as well.

***

If God exists, then He seems to be a fan of jarring juxtapositions.

I sit here restless and aching.

I get up from time to time to sponge water or ginger ale into the mouth of a man who is much sicker, who will never get well.

I can't escape the feeling that there's a lesson that I'm meant to learn that I'm still missing.

If this were a TV show, I'd be running around with my fellow characters yelling "Where's the clue? Where's the clue?"

Is the point that addictive suffering is ultimately - at least technically - self-imposed, optional? That it's a sin to suffer so (ostensibly) needlessly?

Or is the point that all life is suffering? That suffering is the point, in some ways, and that I shouldn't be so weak as to want to avoid it?

***

I'm hesitant to write this next part because I'm appalled at how selfish my reaction was.

But this is a blog - in name if not always in format or particulars - and if I can't be fully honest here, what's the point?

During one moment when Lou was discussing his decision to come home to die instead of continuing his futile struggle against the cancer that's riddling his body, my mom said this to him: "No one wants you to go, Lou, but no one wants you to stay here and suffer."

That phrase "stay here and suffer" ate away at me like acid.

I've often talked about how, had I known what life had in store for me when I was 16 or 18, I would have found the courage to hang myself. Enduring what was ahead of me would have been unfathomable.

Likewise, if I had a kid who I knew would never recover from severe addiction, I believe in all honesty that I would kill my son or daughter rather than let addiction torment and consume them (it's rumored that Nancy did this to her son, the iconoclastic punk rocker Sid Vicious, who was facing a lengthy prison term for murder, but I'm not sure if that's biographical fact or imaginative apocrypha).

***

The most apt metaphor for addiction that I've ever come up with is laid out here in my post on Junji Ito's The Enigma of Amigara Fault.

The mill of addiction grinds slowly, but it grinds exceedingly fine. By the time that addiction is done with you, there is no "you" left. You are nothing but a substance-seeking revenant, a tortured, twisted shadow of who you started out as.

This is not hyperbolic language. If anything, it falls short of the terrible truth. Other than perhaps eating disorders and advanced dementia, I don't know of any other illness that so completely devours the soul of the person suffering from it.

Granted, those other disorders might wipe out the you in you, but addiction takes it one step further by replacing it with something primal, hungry, scheming.

The quiet part that no one ever says is that, even if you stop using, if the disease is far enough along, it might be too late. Some people might be able to "recover" in the sense of not using anymore, but that doesn't mean that they can regain their true selves or live an existence that is anything less than an endless, agonizing struggle against themselves.

***

In my communications with non-addicts, I've often heard versions of the old platitude that "If you hadn't gone through all that, you wouldn't be the person you are today."

My response is that I wish I hadn't had to become the person that I am today. That person can be strong, cool, and capable, sure, and he has a few positive qualities that might not have come to be without the trials and suffering that he's gone through, but the cost to myself and to those around me has been far too high.

There were a great many serious character flaws in the early me that needed addressing, no doubt. But I could've learned through lessons much gentler than those that addiction put me through - and there would have been more me left over at the end of the process, too.

No one deserves this. And this kind of suffering and damage is never justified, never fruitful enough to be "worth it."

I wouldn't wish addiction on a f*cking amoeba, truly.

***

I've been in opioid withdrawal for weeks.

My bones ache in a deep way that I haven't felt since my adolescent growth spurts. My joints creak like an old man's.

My anxiety is electric these days, a sort of agitated, whole-body vibration that hits like a premonition of doom.

I've given up on getting more than two or three hours of sleep at a stretch, and even these brief interludes are troubled.

I've gotta get out of here! I panic as I wake up from a REM-rebound uber-nightmare, my heart racing, my arms and neck breaking out in gooseflesh, my sheets soaked with sweat.

***

I've alluded to the fact that I'm currently coming off of methadone.

If you're not familiar with my story, here's a short synopsis: After an extended clean stretch, I relapsed hard on oxy, benzos, and barbiturates while living in China. I came home toward the end of the pandemic deathly sick from withdrawal, and I went on methadone as a sort of stopgap because my daily dose of oxy (600 mg) was so high that stopping that at the same time as the benzos and phenobarb was shutting my body down.

For reasons detailed here and here, I detest being on opioid maintenance.

Granted, this is nothing unusual; after the six- to 12-month pink cloud period, most people do.

Being on maintenance is living a simulacrum of life rather than a true existence. I feel so fake, so altered, so dishonest in my relationship with reality.

Everything that I say and do is on point; no outside observer would realize that this is a chemically directed tableaux in which I perform the actions, speech, and feelings of everyday life (rather than everyday life itself).

I'm constantly under the influence of a powerful opioid, and the sickest part of it is that I can't even feel it anymore: My body is fully tolerant to the drug, so I don't feel any positive effects from it.

Come to think of it, I don't seem to feel anything at all. (Until I drop my dose again, that is, at which point the emotions come surging back).

Deep down, I realize how muted my soul is. It's like someone has applied the damper pedal to my entire being.

My writing is garbage, and I have very little creative drive.

I'm basically a hermit; I turn 19 out of 20 social invitations down.

***

Methadone is reputedly the hardest drug of all to come off of, and - while my taper thus far stops short of being my worst withdrawal experience - I have nicknamed it the Arduous March for a reason.

I feel like I'm going through chemo and radiation.

I have all of the typical, pernicious opioid withdrawal symptoms, but I also have a profound, sapping fatigue that leaves me doubled over and gasping twice while walking up a 10-step staircase.

I'm dripping with sweat from the second that I get up to perform the smallest task. Trivial chores exhaust me.

I am so sensitive to light, sound, and touch that I sometimes extinguish all of the lights, close the blinds, and cover my eyes and ears while I perform mindfulness exercises.

On top of all of this other glory, methadone withdrawal causes an icepick headache that is unlike anything I've ever felt. It makes it hard to read, to write, to think.

***

The last time that I tried to get off of methadone, which was almost two years ago now, I overdosed on fentanyl after 12 days of drastic dose decreases.

I collapsed on the side of the road (long story) and nearly died.

I was in the Intensive Care Unit for over a week. That was, incidentally, when I decided to start a blog because I realized that I might not have the years that it takes to publish my manuscripts through the traditional route (and also because I liked the idea of more extensive, back-and-forth communication with my readers).

With that incident in mind, I'm taking things slowly and trying not to focus too much on numbers or self-imposed deadlines. As long as I'm moving forward and the dose is going down, I can pause for a breather if need be.

Tapering off of methadone can take years, but I know myself: I don't have the patience for that. Eventually, I'll get frustrated; I'll relapse just to self-sabotage and hurry things along.

***

Thus, I'm trying to balance tapering off on a non-geologic timescale with not going so fast that I push myself into relapse because of the severity of the withdrawal.

It's a delicate balance, but so are many things in medicine and in life.

It's particularly tough to take this on without Jay, my fiancé, by my side. His immigration visa is still held up by delays from the Consular closures during COVID.

Unfortunately, not knowing when he will be able to move to the States has made it very difficult for me to make any plans about staying here and preparing for his arrival vs. going back to China to spend time with him while we wait (I had planned to return to China this summer, but Lou's illness changed things on that front).

To tell you the truth, though, I'm not entirely sorry that Jay's not here to see this.

I'm at a level of physical and mental sickness that activates that atavistic crawl-into-a-hole-and-die impulse. I've always been a loner, and it's easier for me to go through this on my own.

My life is a liminal zone these days. I'm trying to channel John Milton's concept of active waiting and use this weird, in-between time to get my head and body right so that I can meet whatever life throws at me next head on.

***

One of the most rewarding aspects of this blog has been seeing how many people in withdrawal or early recovery contact me with questions.

Many are considering maintenance, and I lay out the pros and cons of buprenorphine and methadone as honestly as I can for them.

For others, I've functioned as a sort of opioid / benzo withdrawal doula, guiding them through the process by telling them what to expect at each stage, what they can do to manage symptoms, and where they can find informational and treatment resources.

I've frequently provided technical info to bring to their doctors because even clinicians who are otherwise competent often have blind spots when it comes to addiction, especially in the U.S.

I'm surprised by how many people have gotten in touch, and I'm grateful to be of some small service.

A chance to leverage vast personal pain to lessen someone else's suffering is one of the most beautiful things that any human being can experience.

***

Lately, I've been thinking about a philosophical book called I and Thou, written by Holocaust survivor Martin Buber, which I attempted to read during high school (it's famous as one of the densest philosophical works of all time, partly because Buber's arguments rely upon the nuances of various formal and informal modes of address in German).

Buber's thesis was that, after surviving a true Hell like the Holocaust, there are only two options: One is to despair, to live as though there is no God; the other is to hold onto meaning, or at least the hope of meaning, by living as though God exists and every single thing is a message from Him.

I'm not sure that I accept a word of it, of course, but it's a radiant concept.

***

I recognize that many of life's challenges are cyclical or recurrent, and that change occurs in upward spirals rather than neat, linear progression.

Still, time seems like an anguished imposition rather than a venerable friend of late; pain layered on pain layered on pain.

It's almost too much to take, sometimes.

All of the glorious moments are there too, of course. But for some reason, they've just never held the same weight for me.

I judge myself hard for that. Aren't I too old to be an angsty Emo teen? Isn't it a moral failure or at least seriously immature to focus too much on the negative?

I've got an old, dark soul, and I'm haunted by all of the people that I've lost.

***

Summer Playlist:

(1) Spirits by the Strumbellas

(2) Phantom Limb by the Shins

(3) Cotton by the Mountain Goats

(4) Sometime Around Midnight by the Airborne Toxic Event

(5) Pompeii by Bastille

(6) Zombie by the Cranberries

(7) Helplessly Hoping by Crosby, Stills, Nash, and Young

(8) In the Sun by Joseph Arthur

(9) Bach Is Back (and a bunch of other classical / modern hybrids) by the Piano Guys

(10) Don't Bring Me Down by ELO