Sometimes it is the quite moments that speak the loudest. I was leaning against the door frame to patient's room in a nursing home. The thought of crossing over the threshold kept my position in check. If I moved the little energy I had left in me would drain away. I would somehow meld into the doorframe that had been sliced too many wheel chairs and the dead and near dead. As I stared across into the room and saw a man, or what used to be a man, laying in a bed of sorts my mind wandered back to the door frame. Did each notch represent someone or what I just being a tired old asshole?
I decided the asshole thing seemed the most likely. After all, one of the great lessons you learn in medicine is that everything changes, no one is special, there are no magical escape routes, and life sometimes just really sucks. It boils down to that very simple concept - life can and does suck. Sometimes life can twist or play out as planned and still be horrible. Other times the twist turns you around and you find footing on new ground.
But standing and staring at this patient was not really a "horrible" moment; it was a sadly inevitable one. The human clump lying on the starched sheets was simply waiting for his ride home. He was dying; there weren't any more magic pills or promises. Now it was all dim lighting and morphine. The only sign of life left in the room was the blinking light on the morphine pump telling me that it was slowly pushing in the pain killer. I said a silent prayer hoping he was getting more than enough.
I have often written that death and I are very old and well acquainted "friends". It does not mean I like it. I just have to accept the fact that the path I walk is sometimes strewn with bodies. But what I have come to realize over the years of working in this constantly imploding neutron bomb we call the AIDS epidemic that death is not always the worst thing that can happen to a person. Dying by degrees or seeing a person's soul melt is worse.
I straightened up and cursed the tiny rips in my shirt that the door embedded as I walked over to Rob.
When I first met Rob he was newly diagnosed and had tossed his well mannered life out the window for the great god known as crack. He ditched his family, friends, career and fortune as the disease of addiction replaced his dignity with chemicals. It also made his a pain in the ass. No one really wanted to bother with Rob. He was bounced from one medical practice to another. He became known a "frequent flyer" at the local ER always seeking pain medications.
Before he even walked though my office door the very first time I had heard more than enough stories to make me box him into the "JPN" category. ("JPN" is the inside medical slang for "Just Plain Nuts" and that means trouble. JPNs can range from colorful to living nightmares. Nothing satisfies them. They lie. Sometimes they steal. Often they simply break people down into tears. JPNs rarely find a stable medical relationship. Something always happens and it is never their fault. So they boomerang from clinician to clinician and knock people over like bowling pins. Rob was a first class JPN.)
About three years ago I had asked Rob to find another provider. I had foolishly made a promise to myself I would not let him become just another JPN in my clinical life. But he finally did. I don't even recall what the breaking point was, but I do remember it was final. A time when both the patient and provider know that it is over. Both sides simply surrender and walk away. It feels like leaving the scene of accident with witness that can identify you. It feels like shit.
Yet here I was staring at him on a mattress crumpled into a ball. He was my patient once again. The hospice team had admitted him to a nursing home I cover. When I saw his name on the new admit list my vision blurred and the veins in my head pounded. As I looked at Rob I recalled our first encounter when he came back into my life.
I was looking through some charts at the nursing stations when Rob appeared in front of me talking non-stop like the three years we had not seen other did not mean much. I suppose it didn't to him or even to me really. When I was an active drunk and user the only thing that was important was how I was going to get my drugs and alcohol today. Nothing else was even on the list. So Rob's barrage at me was more than understandable. I had done it myself many times before I got sober. Being in recovery really only means I am on slip away from falling down the rabbit hole again. It is a lesson I have seen too many people forget and then never climb back out. I was grateful for the painful reminder. This is where I heard the God voice in my head say clearly" "This is the wisdom part where you have been granted the knowledge to know the difference. Now, don't fuck it up."
Yes God, I said to myself, I will not fuck it up...with your help.
So Rob hammered at me and I shut down. Nothing he was saying penetrated my brain. It hardly made sense. It was JPN Rob doing his JPN best at the very end. I was just about to say something to Rob when he looked at me and I could see the energy of the fight just stop dead. He turned slowly and pulled him morphine pump behind him and said, "Just don't fuck up, okay?"
So God and Rob had come to the same mandate. I was not to fuck up.
As Rob slumped away the intern sitting at the nursing station just looked up at me and said, "He is going to pain in the ass, isn't he?"
"Oh, yea. A big pain in the ass."
"Fuck," she said to the air.
"But remember. He is also a big pain in the ass that is going to die. He has always been a big pain in the ass all of his life. However, this is his first time dying."
The intern just stared at me. "Give him what he needs and don't let his behavior be an excuse for you to be a bigger pain in the ass than he is."
The intern leaned back in her chair and was pissed. "It this supposed to be one of those wonderful moments in my medical education when I hear wisdom from above or what?'
"Hell I hope not because I am still waiting for mine to happen. I'd be really pissed if you somehow got your golden moment before I got mine."
She was not taking kindly to my banter. I could see her eyes laser in on me.
"So I guess the gossip mill is correct about you," she said with a sense of satisfaction that only those who know their truth to be gospel.
"I sure hope so." I smiled brightly and slipped my stethoscope into my back pocket. "I hate it when they get it wrong."
She slammed shut the chart in her hands. "So you're a drunk with AIDS just like that jerk. Expect you have a fancy title and lab coat."
I leaned over the top of the desk and said. "Correction. I am a grateful recovering drunk with AIDS and I never wear a lab coat or ask anyone to call me by anything but my first name. You see one of the biggest problems in medicine is that we try to separate out from our patients. We put up barriers so we can hide behind them. It is a lot harder to treat everyone as an equal. It upsets that imbalance you have been brainwashed with."
I just smile and head down the hall. I don't even turn around when I hear her yell after me.
"I suppose THIS is magical moment I am supposed to remember all my life."
I keep on walking without turning back to her. "Nope. But I do think you watch too much TV."
The elevator doors open and I step in and turn to select my floor. The intern was on the other side of the doors and staring at me. I smiled, flash her the peace symbol as the elevator doors closed.
Good article and message. I noticed something in your writing that I have noticed in myself. That is, substituting similar "sounding" and "spelling" of words rather than the actual word intended. It's the kind of thing Spell Check will miss. For example, "what I just being a tired old asshole?" when the word should have been "was". Another, "Expect you have a fancy title and lab coat." rather than the word "Except". I don't mention this to be critical in anyway. It's more of a curiosity if this type of thinking/mistake is somehow attributed to AIDS or the medications. Nonetheless, thanks for the article.
Love the article.
I`m a Recovering Alcoholic/Drug Addict, Bi polar Two Time Cancer Survivor and Hiv Poz (13 years)
Love how you told your story and how I was transported to that place you wrote about. Fear is what I felt. Picturing myself in that bed. Thats why I am so Blessed with gratitude and Hope that when I go I will be surrounded by family and friends who Love me as I am, and most of all that I didn`t die a drunk. Ironic huh?
Best article I've read in a long time. Thanks for sharing.
great great great.
Thanks for the great comments which I really appreciate. However, when I write most of my blogs I think it is important for readers to remember I re-telling a situation that really happened and not just some "story". The longer I remain in HIV practice the more I realize that so little has changed in so many ways. Ignorance has been coupled with arrogance and complaincy. Also, good old fashion "hate" seems to regaining social acceptance. I sometimes come home from AA meetings (where everyone know I am HIV positive) and am dumfounded by the casual hate talk that enters into meetings. To make it worse when people express their concerns about this happening the only thing that happens is NOTHING. I often wonder how many people are slammed back into the HIV closet of shame and hiding on a daily basis due to these issues.
Richard, Are you walking in the sunlight but still looking at the shadows? The source that creates them? I wonder. If so, I sympathize. I'm still there. I would be interested to know how you really sustain yourself without the old compensatons. Lately I have wished that I had a bent to seek their temporary relief--but I'm just too damned ordinary. I have also noticed too often that their is an apathy creeping in from the front desk to the doctors themselves. The doctors restrained somehow by the medical plans they serve from. If I complain of other non-HIV related issues their eyes glaze over and I am again told my numbers are fine. Sometimes the affected need a shoulder to lean on if not cry upon. I do it nowhere else. Thanks for article. I love your association without self editing. LAofLA
One of the things that your comment triggered in me LAofLA is how much I hate bad medicine. I mean I really hate lazy practitioners who think that "numbers" are somehow magic and that those of us living with these great number should just shut up and be happy. I say, once again, fuck them and the numbers. How I wish for the "magical" power of taking nearly all my well intentioned HIV clinician colleagues who are negative and simply bashing their fucking skulls in. It may not make THEM feel any better but I can assure you I would get a lift. But I am on a rant so I need to own that. However, the basic problem with medical providers is simple. They are simple jerks with a degree but have somehow been placed on pedestals by society, themselves, and their patients. The only thing I know that happens to objects place on pedestals is that eventually they topple and crack. Sure some clue and wizardry can make them seem almost flawless again but the fact of the matter is that they (us, them, me) were never flawless in the first place. Medical care is hard to deliver. Good medical care is painful to provide. The other night a women sitting at the same table as I was at a wedding asked "How I did it?" I knew exactly what she was talking about. She was a big time architect and brilliant but she knew no matter what her job she never had to walk into a battlefield and say things that are painful, harsh, and sometimes fatal to people. So when you ask how I manage without "old compensations" all I can come up with is that they were compensations at all. They were simply chemical smoke screens. On a daily basis I acknowledge and accept (sometimes not without a lot of bile spurting) that I have little say in most matters. Yea, I have brains, experience, and brawn..and all that equals is my current clinical drag that gets me through the day. No patient deserves to be ignored or dismissed because the guy the the initials behind their name thinks it is okay. Again, fuck that notion three ways to Sunday and back.
Being a good medical clinician take about the same thing it take to be a good writer...first you open a vein then you do what is necessary.
There are days when I feel like I have sliced open every vein in my soul and curse the fact that did not become a hunky gay boy-man waiter in some overpriced bistro and take home tons of money and eat free. But you know what else? For all my rant and bitching...I wouldn't change a thing. I like being a warrior and do not have any problems with letting my patients, my friends, myself, and my God know when the battle scares are not scabbing over.
Thank you Richard, I got the answer I needed--the difference that makes the difference is that you are a Warrior. Classic! So sometimes the shadows get long and seem to fill the landscape, but you keep putting a foot forward. I'm glad you are one of the many able-minded clinicians on the front line. Thank you for your service and blog. LAofLA
You know I used to shy away from the "warrior" analogy since it always sounded (and still does mostly) rather self-serving. However, while I may feel some reluctance to accept this "mantel" of identity I have come to realize that most simply people go to work every day, but I (and many others) cross over the line in stand. We simply walk through the DMZ and enter "enemy" terrorist and go on with it. I don't know if this makes "different" but I do know that I heard some lyrics in the great musical about bipolar disorder - "Next to Normal" - that was a play on an old saying that jolted me right up out of my seat..."what doesn't kill me doesn't kill me"...and I got it in split second of a T Cell dying. Sometimes life is not about doing better or fixing things. Sometimes life is about survival. The catch is how you decide to survive.
Yes, yes!! I think I see. I've got the survival thing down--have even become a little complacent after surviving a major illness (non HIV related). I have imagined what I would do if I were rich and had done just about everything I wanted including giving back. The question remains--"Now what?" Certainly not another thrill. What is greater or more in depth than survival alone? It sometimes feels like continually moving the goal posts further away. And that's O.K....eventually. Being a warrior seems to have many levels on a spectrum--one self-serving alone--the other of self for serving others. The latter is the warrior I was referring to based on some of what you said about you. The self is the only place to begin I think. That's the kind of selfness I've been lately--beginning to feel a little guilty. Also came out of the health care provider role under a client's psychiatric treatment plan prior to my illness-- bit of a rationale now--recovery. Perhaps a balanced process--equilibrium and the capacity to adapt to whatever comes. Apart from labels, wouldn't that be a pretty decent "I" to proceed from? "The catch is how you decide to survive." Some "hows", I've found, tend to turn into their opposites. There's the rub. What precisely IS survival after a certain viable point? (question to self)
Here is another dirty little secret I am going to let my readers in on: "Sometimes life just sucks!" Pure and simple. Life, life the people that live it, is imperfect. Remember it is also about PROGRESS NOT PERFECTION (I leave the perfection thing up to God). Keep questioning yourself. Argue with yourself. And know that you have ever right to even disagree with yourself. When I talk about surviving it is not just about "getting by" it is about living in complex world as a complex person.
wow great article, really took me there!