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Tuesday, October 4, 2016

A Living Magazine - Grounded in Maine - Day 40 - When Misery Needs Company

I closed my eyes and tried several different breathing techniques. Being on my side made the pain worse. I tried the other side. No difference. The thought occurred to me that maybe I should try lying on my stomach. That did feel slightly better. There was something about having all my weight pushing down on my chest that briefly competed with the pain. Still, it just wasn't comfortable enough to rest.

Whenever I opened my eyes I saw that the small shards of light jabbing into the woods from the street lamps above seemed to create a barely developed photograph; unmoving, static, black and white. I was somewhere between worlds, locked in a moment from which I could not escape. Truly,  hell would be that moment--lasting forever... 

Then, in an almost unbelievable slap of bad fortune, a raindrop hit my face through the tent screen above. I'd forgotten it was due to rain that night. Now I had to sit up, pull out the rainfly, get out of the tent and secure it in the correct orientation, then stake it down. I did all of this, not consciously, but by sheer instinct. I actually felt better moving around doing something than lying in a pain that I couldn't ignore for a single moment.

The hours passed very slowly and my mind kept crossing the aisle from childhood memories to bitter anger, but it mostly settled down in the sadness between them. I wasn't completely there/here anymore. I heard myself moan over and over again, but looked around each time to see if it might have actually been someone else. I was outside myself, but still tied down to the meat. Dying must be exactly like I felt, but actually being dead would release the connection to this broken body. I could imagine what the release would feel like. Life in flesh and blood is the umbilical cord of the soul. Removed too early, the soul can not live on its own. But I knew my soul could survive, even without a body to tie it down. I was angry that nature didn't just make the choice for me and shut down my heart. Instead, I was left to make all the decisions.

I don't know if it was temptation thwarted, fantasy thrown aside, or maybe those feelings about people not being able to find me if I did consciously decide to snip the umbilical cord? Whatever it was, I knew it was not yet the right time. This was probably the biggest disappointment of all. 

I was tired. I am tired of venturing off to do great things, only to come home to my own hunger, poverty, lack of legitimacy, and now involuntarily having to play within the insane medical and social system that I have attacked here at this blog so tenaciously. This heart attack was not going to last for only these couple of days. Instead, it would form a crater in my life; like the result of a terrorist's bomb blowing up right at the end of so much effort to do something novel with all of this Journeying... I knew it then, and I am now dealing with the consequences of this bomb's destruction as I write this very blog post from weeks in the future. 

The rain poured down. Boston, Seattle, Athens, Chelmsford, Falmouth... This night was all of those drizzly times overlaid upon each other and punctuated by intense pain. It was raining within me and without me. If I could make it through to morning, then I could send Melinda a message and let her know what was going on. Maybe she could help me rest at her house or at least get me to a hospital without my having to take a $5,000 ambulance ride? Always, money comes before all other considerations. That is the American way!

At around 5:30 am I took the other two aspirin. There was nothing to wash them down, so I sat up and opened the tent flap to catch a few rain drops in my mouth. Sitting up felt better than lying down. But whenever I sat, I found myself getting really tired. Then I'd lie down and the pain would keep me awake. My stomach hurt from the aspirin and my hernia was also acting up from the sandwich I'd eaten earlier. I cycled between the two positions - sitting and lying - until the sky was finally bright enough to be called "morning."

I consoled myself with the lowest common denominator--at least things weren't any worse. But I was killing my heart's muscle with every bit of oxygen that was not getting there. Over all of those hours, I had managed to decide only one thing for sure: I was going to pack up everything and take it with me in the morning, no matter what. I wasn't going to leave anything behind. 

I did exactly that, even packing the rainfly stakes in their correct bag, getting it all zipped up. Then I climbed the hill back up to the roadside where I walked along the edge of the bridge to the road itself, and made my way to Dunkin Donuts.

I walked in to find probably the crappiest Dunkin Donuts to which I'd ever been. It wasn't that it was dirty. It was just dark, looked thrown together, was lacking merchandise and (I thought) mismanaged. The employees were obviously overworked. Customers came and went as I stood before the half empty cooler trying to decide what to buy, and pounding myself on the chest. 

After all that standing, I simply chose a water and then stood in line behind a customer who'd had her simple order screwed up at the drive thru window and was now inside demanding justice. The uncomfortable truth is that this "Dunkin Donuts" was in fact just a cover story attempt at squeezing a few extra bucks out of the gas station half of the business. The owners had apparently done the absolute minimum possible to gain their Dunkin Donuts signs from corporate. But this was hardly even an excuse for a store.

Some teenage kids came in and loudly pranced around, sitting at the table I was planning to use without buying anything. Brats! I thought. Finally, it apparently became my great privilege to buy the water I'd been holding in line for ten minutes. The unsmiling girl at the register didn't say hello and didn't thank me after I paid. I guess I shouldn't have cared, given everything else. Maybe I was looking for reasons to be even more miserable. Sometimes misery leads to masochism. After all, having control over wanting more pain, was better than having control over nothing at all.

I sat down at a table abutting the door to the only restroom (unisex) and struggled to get online. Dunkin Donuts has a convoluted process of up to four splash pages before they allow you online. Some work. Some don't work and constantly need refreshing. It was only because I had experience navigating this Wi-Fi salad many times before that I was able to conquer these pages. But, that wouldn't be the last of my internet concerns. Every ten minutes the site would end my session and I would need to do it all over again.

Meanwhile people would come in just to use the restroom, along with the customers and employees who also needed the room. They practically stood right on top of me. The restroom was occupied continuously while I was sitting there at the table and it smelled horrible. There was such a line of impatient people that conflicts began to surface about who was really in line first. To me, in my discomfiture, this was the symbol of our American culture. This scene was the carefully nurtured result of a hundred years of consumer society, fast food living, and car-based culture. If consumer society had actually been the answer for leading any country into a Utopian age of some kind, surely America would have gotten there by now! Naturally, this thought didn't make me feel any better...except perhaps for its masochistic value.

I was able to get a Facebook message to Melinda. She was understandably shocked at the news and asked me why I wasn't at a hospital. Explaining that it was complicated, I asked if she would just come and pick me up, since she was planning to meet me there in town later for lunch anyway. Again, understandably, she thought that I should call an ambulance immediately and it took a lot of my replies, the frustration of losing my internet connection and re-logging in, to convince her that I really just needed a friend to be with me through this. I was afraid I might be mistreated if the hospital knew I had no insurance and no one was there with me. My misery needed company. She reluctantly agreed and left for the 40 minute drive. 

As I waited, I paced around a bit outside, distracting myself by taking a couple of pictures... 


Green Bean, surprisingly well-packed.



Pretty little asters enjoying the morning light.


I went back inside to check if Melinda had messaged me, but I couldn't get back online. I assumed she would be there shortly and was eager to see her minivan coming up Route 1. I desperately tried to remember that it was a nice day and be thankful the night was over. But, my ability to think about anything at all was seriously declining. Instead of being able to find things to distract myself, the pain was distracting me from everything else.

She showed up sooner than I thought she would and I climbed into the passenger's seat. We decided that it would be best to go to the Lincoln Health Center Hospital, Miles Campus, in Damariscotta. I had just left that town the day before. It was all so strange...and continued to make me sad. Over this day I would be briskly driven down the same Route 1 I'd spent the last month and a half climbing up, passing through all the towns I had walked through to get as far as I'd gotten up the coast.

When we arrived I got out and went straight in the Emergency Room door. I let them know I'd been having a heart attack for the last 12 hours. This began the process I'd anticipated so accurately and grudgingly. I was re-entering "the system."

Paperwork flew by, ECG's were hooked up and analyzed, an X-Ray was taken of my heart, nitroglycerin was introduced and failed to open my blood vessels. I was trying to get the message across that I was in pain and could really use a little something. Melinda became my pain advocate, and finally they administered 4 mg of morphine. It should have been 10 mg, but between the undue opiate fear that causes doctors to be stingy, and presumably not wanting to risk a bad reaction, they did what they "could" for the moment.

After determining for sure that the stent in my right coronary artery was indeed blocked, the decision was made to transport me by ambulance to Maine Medical Center. There is no better place in this part of the country for what I was about to have done. They transferred me from the hospital gurney to the rescue stretcher and wheeled me out back to a waiting ambulance.

Then we were off and out onto the highway. Two very nice young women talked with me as we flew first class southward toward Portland. The ironic act of watching each town I'd just been to and reported on here at IWALLK, pass by and fade away through the rear windows behind this speeding vehicle, was not lost on my metaphor-laden mind.

I hated it. I'm not a quitter. To be dragged back through a project I couldn't finish made the trip that much more difficult. The pain returned after a half hour or so, and I told my attendants. They decided to give me a shot of fentanyl. They were authorized to give me 1,000 mcg, but chose to give me only half. Once again the pain only diminished slightly. They should have given me the full dose.

Pain management is held hostage by so many things. It is unfair and illogical. At the very top of this problem - overseeing what doctors are allowed to do for their patients is (of all things) the Drug Enforcement Administration (DEA). This law enforcement organization (besides locking away nonviolent recreational "illicit" drug users) oversees the medical use of all drugs. It is almost beyond belief, our society is so messed up that doctors themselves have their hands tied by this militaristic and failed organization (the DEA). The American government, through the manipulation of ideological politicians, have chosen the DEA to be the final authority for how to properly treat pain? Seriously?

For now, I guess it is what it is. Still, I want it to be crystal clear to every person who reads this post that, on this day, because of the fear originating from heavy handed DEA oversight, twice I was denied the full amount of medicine that would have safely relieved my pain. You tell me. Is that okay?

When I arrived at Maine Medical Center the ambulance backed right up to the "cath lab"; a place so often used (heart disease being "the leading cause of death for both men and women" in the United States) that this operating room apparently gets to have its own catchy nickname. It reminded me more of an oil changing station or a meat processing plant. But the cost for utilizing their services aint no $19.95! I said goodbye to my ambulance mates and was wheeled into this "lab."

As they transferred me to the cold stainless steel table I asked them to let me know what was going on, and that I might not want a stent. The doctor (Mary C. Fahrenbach) literally laughed at me. The implication was, "...silly patient, you don't know what you need!"

They pulled off my shorts and underwear and shaved my crotch in case the catheter needed to be stuck in there. Thankfully, the latest and the greatest technique since the last time I was in their graces was to go in through the wrist--a welcome innovation for we regular stent customers. An assistant twisted my wrist awkwardly and told me to keep it positioned upward. They injected a huge dose of some kind of benzodiazepine, which left my head swimming in a blurry soup while I tried to keep up with what was going on.

Dr. Fahrenbach was chewing on a piece of her sandwich while everyone was drugging and shaving me. She seemed bored. They all joked about their slogan in a sing-songy way, "Serving Maine and saving lives!" (or something like that), then everyone seemed to yawn and roll their eyes...

Indeed, I feel like a piece of meat. It was singularly the most non-compassionate medical environment I have ever been in. They could have been aliens for all I knew. And, I was a thing in their lab. My impression was that they didn't really give two shits about me. Like any other animal making noises in any other indifferent laboratory, while strapped to a table, my words were just noises to be ignored. Someone mentioned something about my wrist and an assistant chastised me for moving it out of place. I slurred a "...sorrryy" and she twisted it back enough for them to insert the catheter.

Well, at this point, I didn't have to be a genius to determine that they were going to do whatever the hell they wanted and not honor my request to tell me what was going on. As they began the procedure, I said that I heard something metallic. The assistant, as if irritated by having to talk to the animal strapped to the table, said it was just the catheter traveling up through my shoulder and into my heart. Ho hummm...

I assume that people (including these folks) go into medicine because they care about other people and want to help them. But, I also think that things can become so routine that empathy and bedside manner become secondary after witnessing the two hundredth procedure. Every job can become tiring--even exhausting. This is understandable. But the medical industry should be held to a different standard, considering the immense amount of reverence they have been afforded in this country. I know for certain now that these are not the gods that society has made them out to be. They are human beings. Like any McDonald's employee, have long days that they are just trying to get through. I believe that was the situation in this case and on this long day.

It was unstoppable now. Within five minutes they had placed a new stent inside the old one and expanded it to allow for the blood to pass through. I now had two stents in the same place. The first one had been placed in 2006 with no information provided to me about alternatives, and to some extent also against my will. And, the second one had been placed after no discussion with me, by these machine-like mechanics in this garage-like "cath lab."

The first stent gave me heart disease and now the second one was locking me into the inevitable cycle of blockages and procedures for the rest of my significantly-shortening life. I would now have to take drugs to combat the propensity of these stents to clog. Win-win-win for the medical industry! They got to force me to buy some of their most expensive gadgets--twice, roped me into their system of perpetual future doctor visits, and could presently make my reliance upon their somewhat poorly understood drugs permanent.

Yes, I felt better but was still in some residual pain. Twelve hours with a blocked artery had taken a toll. And it still is.

When they were done with me they wheeled up to the ICU of the cardiology wing (Floor 9) without even a "good luck." This place would be the first of my little $10,000 a day bedrooms. They injected me with something else and I restarted the endless introduction pills again. When the nurse left the room I sat alone for a moment, hooked up to a dozen tubes and wires just as I had been ten years before. I was even in the same room! Then Melinda - who had driven down to Portland - and my dad, and his partner, Themi--who had seen the news on Facebook and come into town, were allowed in to visit...


My dad and Themi.



Melinda.


I was all bloated and unshaven. I hadn't taken a shower for five days. Not pleased about being in this situation again, I was determined to get out of the hospital as soon as I possibly could. I knew how to play this part of the game now. I did not feel the same dread and uncertainty that I had in 2006--like I might never be discharged. This time, I knew exactly what was going on and that I simply had to accept it, play along and ride my way back to the outside world. It was just another form of long distance walking. I was at point A and needed to get to point B.

I couldn't decide what I would do about the Grounded in Maine Journey, nor anything else. This was a situation for which I had not professionally planned. Of course, I always knew it was a possibility, but the chances for heart problems (I wrongly assumed) were so slight as to be nonexistent...


My monitor.






The nurse and nurse's assistant were very kind and attentive. Nothing negative can be said about them, nor the parade of subsequent RN's and CNA's who would smile while they poked and prodded me for the next three days. 

During this second time around, I made many observations that I had not noticed the first time. In posts to come, I will get into much more detail about these--including the shocking lack of communication between doctors, residents, techs, nurses and assistants, the mind-numbing repetition of asking the same questions over and over again, the complete disregard for the importance of sleep, the overreaction to small and anomalous events leading to knee-jerk changes in medication, the use of numbers, rather than mixing them with intuition, in this entirely science-based theory of Western Medicine, which runs by the unspoken assumption that treatment is to be prioritized over healing. Each system is to be singled out and treated, while the whole is largely disregarded.

In this artificial, meme-dense, American social/medical system, complaints based on facts, skepticism of the conventional ways of doing things, and honest criticism are reviled by both the industry and the general public alike. 

To talk about the problems at a hospital seems to many people to be in bad taste. It is assumed that medicine is blind to profit, that "doing no harm" has a whole list of "reasonable" caveats beside it, and that fear of error-exposure is an acceptable excuse for covering up mistakes. What I observed during the three and a half days I was detained at this hospital turned out to be a revelation like no other. Had I better foresight, I would have made recordings and taken videos of each of the things I will eventually disclose.

By and large, it became exceedingly clear to me that - aside from their unquestioning loyalty to the broken medical system, and the resulting complacency which keeps it stumbling forward - the people of medicine were good at what they had been trained to do. They were well-meaning and worked very hard and their difficult and sometimes-thankless jobs. They cared about their patients...within the parameters of systemic acceptance. 

But the system itself is so incredibly hypocritical, illogically designed, unabashedly profit-based, not objectively overseen by any impartial body or public reporting authority, overly assumed to be nearly error-free (keeping in mind again that medical error is the third leading cause of death in America), inefficient, and deeply hostile to honest evaluation. 

Depending upon the attitude of the patient, a hospital stay can be, at best, a place of silly misunderstandings, humorous redundancies, and where innocent, culturally-deified emperors walk around wearing no clothes under their white coats, making courageous decisions about life and death. Or, at worst, it can be a prison filled with torture chambers, where strangers wake you up every hour of the night, ask you the same questions ad infinitum, stick needles in you, use you to experiment with different medications and say they need "vitals"--when, in fact, the readings taken during each of the prior hours are usually quite sufficient for keeping an eye on things. 

I relearned very quickly the reinforced lessen that nearly every procedure followed in a hospital is for the convenience, training, experimentation, and fear of litigation for all staff members involved, and has very little to do with what is holistically best for the patient. 

Between the mortal fear over malpractice litigation (well founded apparently considering the statistic for medical error I mentioned above), and the common instinct to appear as though one is always doing something (for job security sake), the patient is really of secondary concern. Maintenance of the system itself (a $3.24 trillion industry in the US) must rise above all other concerns. This is not just me being jaded. It is self-evident and observable fact.

One of the best examples of this intense medical industry self-interest is exemplified by the practice of not letting the patient have uninterrupted sleep for more than an hour at a time. I will have much more to say about this when I discuss the torment and travesty that my poor roommate, George, went through, in a separate essay.

For me, the lack of concern about sleep - sleep, being what anyone with or without a white coat would agree is one of the most important aspects of healing, a most obvious no-brainer, recognized throughout all of medical history - typifies and perfectly represents just how disconnected and illogical is the 21st Century American hospital patient experience. 

How can a system that deprives its patients of this most basic human need--sleep, also be so unquestionably accepted as an industry operating by "best practices"? I'm tired of the politically correct peer-pressure that compels thinking people to follow the "Well, we don't talk about that..." bullshit when trying to confront these problems. The good intentions of the people who work in medicine are not a sufficient enough reason to ignore profound systemic problems in the industry.

In my case (and for millions of others), what further compounds all the above is the lack of a compensatory financial system for those who can't afford insurance. This profit-driven, unaffordable, convoluted and easily abused third world marketplace called "the American healthcare insurance system" doesn't just allow people like me to slip through the cracks, it hopes we do. It then encourages us to just shut the hell up about it by being intentionally complex and confusing. 

Well, I assure you all that this bee is going to remain buzzing in the bonnet of both the stethoscope-draped "heroes" and the red tape-wielding bureaucrats. Both have way too much power.

After my visitors left I was back in the rubber-gloved hands of the staff, as they struggled to determine what drugs to give me, the dosages, and with what frequency. At least we were both on the same mission to some degree: making sure I stayed alive long enough to be discharged without too many errors occurring. 

I slept much of the afternoon whenever a spare moment offered the opportunity, knowing well that I would be visited multiple times that night. I'd had no sleep the night before, so resting was my number one priority, no matter what.

As I slipped in and out of sleep on this first night in the hospital, I looked around and caught sight of a fruit fly, exhausted from trying to escape through the sealed window. He would walk a few steps from the corner of the window, lift his legs up onto the glass, remembered there was no way out, then turn and walk back the corner. In some sense, he and I were as close as cell mates--creatures who had made it through all of the bullshit of growing up, trying to do what we thought we were put on this earth to do, only to be imprisoned in sterile isolation. We paced our respective window sills and looked outside at the world we were no longer part of. The only action we could take was to lift a limb up to the glass... 

By about 7:00 pm, I looked back at the window and noticed he was lying upside down in the corner with his lifeless legs up the air. I thought then, as I'm thinking right now, that surely he was the lucky one............released...........


* * * * * * *
      

This post represents the abrupt end of the Grounded in Maine Journey. Perhaps it is fitting that like the Manifest Destiny, Living Magazine and Homecoming Journeys, it concluded with personal disappointment--this time, profoundly so. Perhaps my only bragging right is: consistency. 

I'm sorry that I could not put a positive spin on it all. To do so would be disingenuous. The purpose of this blog has changed many times over the last five years. But, it was never designed to be artificially "uplifting." It is simply the honest record of my interpretation of the experiences I've had traveling at ground level around Maine and America and how these adventures have affected me. 

There will be more at some point, sooner or later. I just hope the reader got something out of what has been written here in the last two years. 

I thank you for wallking along with me and for reading, sharing and loving this Living Magazine.




1 comment:

  1. Most importantly, I am glad you are around to share your story. I'm sure you have spent many days and nights analyzing all the pre and post event issues. The more I read and get to know you, the more I feel needs to be shared. You've made a mission out of your visions and I hear you loud and clear. Some days I pray for that meteor my brother :) But my Spark always rebukes me on that. Chop wood and carry water, every day and let every breath of life that leaves our bodies echo peace and goodwill towards everyone. Evil won't win, no matter what it tries to make us believe. It can't even exist without good. Wearing our souls on the outside is a daily effort. Thank you Alex!!

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