Quality of Life

The loud exhaust of a motorcycle echoing down the sidewalk let Ethan know that his patient Justin would be arriving soon. This was not the hospital however, where they had met briefly the day before, nor a therapist office or even one of those fancy rejuvenation clinics that refers to their over paying customers as patients to make their shiny promises look legitimate. This was just a bar, but it was the place they had decided to meet to discuss why Justin intended to kill himself.

They had decided to meet at this bar near the end Justin’s state mandated seventy two hour psychiatric hold. Ethan’s shift in the Emergency Room started at the last hour of Justin’s observation, and Ethan had been assigned to supervise the end of his stay. In that time, Ethan learned that Justin had recently discovered he had Huntington’s Disease. This was usually something that someone with this disease is anxiously aware of because of its hereditary origins, but Justin had been safely surrendered as a baby to the very same hospital he sat in now. Whoever dropped him off had either neglected to mention or did not know about the monster hiding in his genes, and Justin had only discovered this disease at thirty-three because of a doctor’s hunch.

Ethan saw the fear, the uncertainty, and the defeated remnants of resilience that Justin was clinging to. Justin thought Ethan was cute, and impending doom makes any chance of connection one worth taking, and they hit it off immediately. Justin told Ethan why he was there while his adopted father rolled his eyes and his adopted mother sighed in exasperation. Having learned that his brain would continue to degenerate over the years, resulting in a slurry of horrendously worsening neurological defects, Justin made a choice while he still had the ability to. He sat down with his loving family, and informed them that after a big party that evening, he would be riding his motorcycle to the nearest national park, and attempting to fight a bear. The way he saw it, he either manages to kill a bear with his bare hands, or goes out fighting in a spectacular story. After Ethan stopped snickering at both Justin’s plan and the confidence in which he stated each possibility was equally likely, Ethan sighed and agreed that he would rather go out that way too if he was faced with the inevitable and inhuman diagnosis of Huntington’s.

Ethan solemnly nodded to confirm each stage of progression as Justin recited what doctors and google had told him. Justin was in the early stage, having skipped the preclinical stage. That meant the sporadic tremor in his cheek that resulted in a smirking look and the twitches in his right middle finger was not his subconscious giving the world the old Governor Reagan. Chorea was the medical term for it, and Justin thanked Ethan for that information with the sincerest sarcasm. The progression of the disease can be quickly summed up by it’s next three stages; Middle, Late, End-of-life.

They had agreed to meet at this bar in the Hospital’s patient bathroom. Ethan accompanied Justin into the restroom as protocol required, which allowed Justin the only privacy from his concerned family. Once the bathroom door shut, Justin turned to Ethan.

“Since I am about to get naked in front of you, how about you buy me a drink tomorrow?”.

All Ethan was able to ask was, “Naked?” before Justin flung his hospital gown at the startled nurse in one smooth motion. Snickering, Justin turned and began to urinate, and watched in the mirror as Ethan’s face reddened.

“Ahhh I am sorry, I just needed that laugh. Although I am looking for a boyfriend if you were interested?”. Ethan graciously declined and handed Justin back his gown. Justin quietly and despondently remarked under his breath that it wouldn’t be a long relationship anyway. Justin finished and took the gown back from Ethan’s outstretched hand and turned face. “Seriously though, is there any chance a drink is still on the table?” He paused and looked down and although his face twitched, Ethan could read the plea for help clearly. They agreed to meet two day’s later at Justin’s favorite spot at three thirty-five p.m precisely as per Justin’s request.

“Do you know what we call those things in the E.R?” Ethan asked Justin as he walked his bike into the spot Ethan had been standing in. Justin took off his helmet and looked at Ethan deliberately impassive. “Donor Cycles” Ethan said, “It’s usually young people with very viable organs after all.” This time Justin shrugged, and gestured at the freshly applied sticker on the side of his bike, “Live Fast, Eat Ass”.

“Oh also check out this other decal I got” Justin smiled and pulled out his license with the freshly added Organ Donor designation “Wouldn’t want to be a poser or anything”. Ethan rolled his eyes, ignoring Justin wide gap-toothed smile, and started in.

“Alright well lets start there, why do that fast? Shouldn’t you uh take your time? Maybe enjoy the scenery or something?”

“Sure, definitely got loads of time to sit around and enjoy the scenery, what with this time bomb strapped to my DNA” Justin replied with his signature sarcasm.

Ethan reddened again, “Alright lets just go inside then” he barked out. They went in, ordered their drinks and sat down.

They sat for a minute, neither knowing what exactly to say or where to start. Ethan and Justin both watched quietly as Justin’s index finger tapped out a beat to a song that neither of them recognized.

“Have you made any attempts or come up with any more plans to commit suicide?”. Ethan broke the silence with this pointed question, and said it with enough professional command that the finger stopped, seemingly snapping to attention.

“Right to the point then huh?” Justin asked, looking up from a now resting finger. “No, I have not made any attempts, as I have had no less than one eye on me at all times. It makes me feel young, like I’m that crazy wild child again.” Ethan continued to look him in the eye, waiting for the next part of the checklist to be acknowledged before he could relax. Justin smiled, “And I did some research and finding a lone male bear and coming in quick for a surprise kick to the groin and a gouge of the eyes is my best bet at getting the upper hand“.

Ethan rolled his eyes, “Look, I know you got this whole bear joke going on but I seriously need to know where your mental state and sense of self-preservation is”. Justin rolled his eyes back, a solid return in their game of optic tennis. “Well I made it here tonight didn’t I?”

“Fair enough” Ethan responded and sat back in his chair. Justin stirred his drink with his finger, imagining that swirling it in ice would freeze the decay before it spread.

A different look crossed Justin’s eyes as he cast them down. “I still want to goto a national park. And I want to hike my favorite trail, alone. Alone with my thoughts, my senses, my still able body. Right around sundown, there’s this beautiful view point at the top that looks over this deep ravine. And I thought maybe I would try to hike a little bit further this time.” Justin’s voice faltered slightly as he tried to say ‘throw myself off the cliff’ without tearing up. They went silent, and the silence seemed to mimick the time it would have taken for Justin’s body to smack into the ravine’s rocky floor.

“Look, while I obviously cannot know what you are feeling right now, I can begin to imagine reasons why that seems like a better alternative. But why kill yourself? Why now?”. Ethan had naturally taken charge of this meeting, as he recognized Justin’s call for help for what it was. But instead of assuming and proposing, he asked and listened. “What made you feel that suicide was a better alternative than taking it day by day? Huntington’s gives you an estimate of how much longer you have left, but that’s no guarantee.”

“How about this guarantee?”. Tears began to form in Justin’s eyes. “The certainty of a monstrous disease that would remind me every day of its spreading tendrils. I mean just imagine them, creeping out like weeds, slowly, maliciously, taking everything from me.” He stretched his arms across the table, palms open to ceiling, then slowly started to curl his arms inwards, starting at the fingertips. “While I’m certainly not looking forward to seeing my body’s crumbling contortion, at least my body can only decay in a predicable way. My arm can only curl so much, there is a limit and that limit is known”. Justin dropped his curled arms to his side.

“What’s it going to do to me? When will this, thing, start playing musical chairs with my brain? Sure I may be able to see fine at first, hear well enough, but when will I stop feeling this” He closed his eyes and brushed his own arm lightly with his other hand “Alright, so I stop feeling things as much. What about when I don’t recognize my family? Or even worse, what if I do still recognize them? What if I see their faces through blurry eyes and I hear their muffled love, and I can’t return it? When will words feel thick and dry in my throat until they stop coming out at all? ”

Justin wiped away the tears from his eyes and barely suppressing his rage he exclaimed “Why the fuck would I want any one I love to watch me go through that? And worse, to see that their love couldn’t do a fucking thing? At least this way it’s over and done, like that”. Justin snapped his fingers and fell back into his seat.

Ethan swallowed the lump in his throat, his tried and true method to prevent himself from sobbing while discussing the dark realities of life that few people can manage to even acknowledge.

“I cannot make my family go through that.” Justin shook his head, still angry, “Besides watching me go through this, do you have any idea how much money it will cost to take care of me? That is reason alone to bow out now”.

Ethan knew all too well what Justin meant. The practice of medicine is a business almost like every other. A skilled and trained professional administers goods and services, and the recipient of them pays for the goods and services received. However this is the only business whose consumers would rather not be there, given the choice. Consumers, a.k.a people, who are often sad, scared, and alone, realizing exactly how inevitable entropy is and willing to do anything to feel better again. Desperate is no place to be when in need of help. Unlimited revenue due to universal demand, with an easy lifetime guarantee slapped on every visit. Someone who tests positive with Huntington’s will certainly, barring any advancement in the practice, lose the ability to work and start to need assistance early on in the progression of the disease. The medical cost of maintaining comfort, safety, and health, will grow in both price and futility until they are deceased and those left must pay those bills despite having just watched their loved one shed every beautiful petal until they wilted away all together.

Ethan began to say softly, “There are programs, and assistance that can be-“

“It doesn’t matter” Justin said, “It isn’t all about the dollar amount. I mean it is, but more so it’s about the stress that it puts on them and the lives it prevents them from living.” Justin scoffed, “And I don’t even know what is worse, Huntington’s or dealing with insurance!”

Ethan chuckled, unable to help himself from agreeing with Justin. He saw it every day. Insurance won’t cover all of this, or some of that, or any of it until this or that condition is met. Or the doctor simply orders the procedure, with little to no explanation, but full expectation of compliance because of their designation of M.D, also known as Medical Diety. Who knows if insurance will cover that either, and finding out is like being forced to take the SAT while, well, sick.

Justin truly did see the situation for what it was. He saw how his parents would constantly be torn between caretaking and maintaining the household, while also needing more and more money to support their decaying son. Financial stress plus emotional stress equals a metric ton of constant stress, devouring the body and soul.

Justin looked at Ethan and Ethan looked at Justin they both felt the weight of inevitable and unimaginable sorrow. That sorrow fell over them like a soft sheet as soon as they began their conversation, it’s weight imperceptible at first. It grew heavier and tighter around them as they confronted the realities of both the disease and the healthcare system. As that sorrow starts to snuff out the oxygen and replaces it with its own gaseous form. Sorrow is a lot like oxygen, but it has the ability to change its mass to every individual situation. It fills the lungs and circulates through the bloodstream, and slowly the heart pumps the sorrow with its sinister alchemy all around the body. Once its infiltrated everything, the arms, the lungs, the head, it starts to pull you down. The heart begins to hurt, a side effect of the pressure needed to push this weight through the veins as it desperately attempts to keep you alive. For some the weight is too much, and for others the sorrow dissipates before it becomes too much. Neither one is lucky, or stronger, just relieved in different ways.

“So let me think, uhhh around this time I believe I’m supposed to remark despondently that you couldn’t possibly know what it’s like. One gleaming tear will flow down the side of my turned head.” Justin then turned his head accordingly, and dramatically. “This of course results in your unveiling of the related or somehow equivalent traumatic backstory, the result being this new vague establishment of a loosely connected premise for you to extend your magically positive rope of hope for me clutch onto as we ride off into the sunset” Justin gestured and looked off into a far away horizon as he trailed off.

His face reddened, and looking down at his fidgeting finger, he said “It’s a defense mechanism, I’m sorry.”

Ethan shook his head, “Although that is the classic route, I was planning on revealing to you that I am actually your biological father, and I have come to apologize profusely for passing on the disease, then help you find the cure.” Ethan’s smile grew as he saw Justin scrutinize his face closely, do the approximate math, and upon realizing it was mostly unlikely, Justin started to laugh.

“Look, here’s what I can tell you.” Ethan sighed, put his forearms on the table, and leaned forward. “I don’t have any magic words or really that positive of an outlook on life. I work in the Emergency Room because it’s one of the few department’s where I can usually say I know for a fact this person in front of me needs my help. Lots of other places in the hospital, well its questionable. My first job was Cardiology, and on most days I couldn’t give you a single medical reason, to the extent of my earned knowledge and subsequent research, why I was preparing this sucker for an angiogram. Shaved crotch, sedation, needle inserted into the femoral artery to inject a contrast dye into the vessels for a picture of the openness and health of the arterial walls, and that’s the minimum. If the doctor sees a need for a stent, a small artificial segment of wall made of a metal mesh is placed that is designed to open and restore blood flow. Same procedure that saves countless lives in the event of a heart attack, and is used to prevent one too.” Ethan scoffed.

“I asked to transfer after I saw a doctor put the twenty second ‘preventative’ stent in a fifty four year old that loved cheeseburgers. Between knowing this is a problem in our healthcare system and actively just pretending it doesn’t exist if I am not doing it everyday, yeah I don’t always feel the best about myself.” Ethan smiled, “You know the reason I wanted to become a nurse? Because every time I told people that’s what I wanted to do, they told me the world needed more people like me. Which indirectly meant it needed me too right? I mean I am people like me. Now days I tell people I am a nurse just to hopefully hear them say it. Maybe hearing it will make me believe it for a while longer.”

Justin placed his hand on Ethan’s shoulder, and Ethan could not feel the wiggling finger. Justin held it for a moment, and told Ethan “Well it’s not Huntington’s, but I feel it, and I can at least tell you I’m not sure if I would’ve made it through the last two day’s if it wasn’t for this upcoming talk.” Justin pulled his hand away. More chipper, he continued “Kinda like when you know the dentist is coming up and you could just ignore it but instead you are like ‘alright I guess I can get it over with’. But now that I’m here, and we’ve conquered these emotional hurdles together, you may now grant me the magical solution to make everything ok, and I will go on smiling until I can’t control it anymore.” Justin’s chipperness faded back into seriousness by the time he finished talking.

Ethan shrugged, “All I can tell you is that family of yours would rather have every single day possible and know they were there until the end then to wonder what other memories they could have had with you in them. There is always the hope for a breakthrough in research, but not if you kill yourself. Live each day like you have up until now and let those who love you show you that love longer. Besides, I suppose I could lend a hand when things progress, help out a little”

“Ohh I guess I could look forward to you giving me a sponge bath one day” Justin said, smiling wildly.

They laughed. They cried. They shared stories. Ethan told Justin about the girl he planned to propose to and Justin speculated how many guilt sleepovers he could muster. They discussed when the next time they could meet and check up could be and exchanged numbers. They walked out and Ethan extended his hand, which Justin met with a firm squeeze. Ethan squeezed back, and pulled Justin in for a tight hug. Justin laughed and squeezed back, then started to playfully move his hand down Ethan’s backside before, pulling away and climbing onto the motorcycle.

“Hey put that helmet on dumbass” Ethan yelled out as Justin backed out into the street. Justin smiled, and gave the “Live Fast, Eat Ass” sticker two slaps. Justin aligned himself with the street, revved the engine three times for Ethan’s bemusement, then started down the street, sun setting now after their long talk inside the bar.

Ethan watched Justin’s saddled figure stop at the intersection. Justin turned to look at Ethan in his handle bar mirror, and kept looking back he took off aggressively from the stop sign to show off. This meant only Ethan saw the truck roll just to far into the intersection to bring Justin and his momentum to a severe stop. Justin’s helmet-less head smacked into the hood as the rest of his body bounced limply over the front fender. Several people heard the crunch, and Ethan could tell just how bad it was from where he stood, where they stood moments before. While some of those who witnessed it started to call 911 and the driver of the truck rolled Justin’s body over, Ethan pulled out his own cell phone. He walked down to the corner and quickly confirmed what he knew, blood slowly trickling from Justin’s ear. He sat on the corner and cried while he waited for the ambulance to arrive, a call for rapid transport to the hospital having been issued for a young brain dead male and confirmed organ donor, with a nurse on scene assisting.