Arjuna

Rhythmic vibrations expedite life.
Electric chaos controls all thought.
Three minds try to set the stage ,
While five bodies compete for the spotlight.

Why is there war in this place?
I am the leader of all sides.

My body, the battleground;
My soul, the motive;
My perception, the weapon;
My will, the hero.

This life; this spirit; this being;
A fleeting request for tranquility’s light…

Tired of the propaganda.
Frustrated with the glorified demolition.

Let go of my prisoners of war.
Set them free, they too have
Their own wars to settle.

 

 

*********************************************************************

 

 

I’ve been here for two weeks and each day has brought with it new light. Whether it has been a sunrise over distant clouds or a synchronistic conversation with someone who is here with purpose,  I have been positively stimulated. Until last night, I had been thinking that the intense natural beauty around us must somehow be transforming the psyche of the residents and dissolving their fears.

 

Yesterday evening, I made my now daily jaunt into town for supplies, a change of scenery, and a cold beer.  I found myself making the usual stops. Stop 1 :the local ATM – there is always a threat of it having no money as the tourists filing off the ferry dock tend to bleed it dry. Stop 2: the downtown grocer – I always like to peak at the fresh catch coming off the fishing boats.  Stop 3:Larry’s Landing / Redbeard’s Saloon  –  my favorite local bar down by the wharfside village.

 

This is a place where among other things, the locals and ex pats alike routinely come to catch an afternoon buzz, take the pulse of the island,  and if lucky – watch the tail end of a Boston Red Sox game. “Larry’s” can only be described as modern day pirate tavern, where you are expected to pour you own drinks. Literally – you order a “Jack and Coke”, and you are handed a bottle of Jack Daniels, a cup full of ice, and a warm can of coke. The allowance to choose the dosage of your own poison is the most unbelievable business strategy I have ever seen at a bar. But this is an allowance I could get used to.

 

It seems that I every time that I go into this place I run in to familiar, yet completely unknown, people. These strangers are generally quick to tell you all about both their daily conquests and failures over a number of strong beverages. If you are lucky, they may have you co-pilot game of nude photo hunt with them. I found out that the owners are three ex pats. Two of whom are a couple of young guys from my “neck of the woods” in Massachusetts. I am yet to meet them, but it certainly explains the Red Sox connection and the ambiance.

 

It is a clever joint. When you stand on the back deck, while playing a game of pool on the outdoor tables, the scent is unmistakable. The warm winds gently carry the heavenly smells of high priced downtown dinner right through your nose, bypassing your brain, and causing serious yearning in your stomach. The desire to stay in town and consume is unrelenting. I wonder if the owners have some vested interest in restaurants around here. It wouldn’t surprise me given their clearly unique approach to sales.

 

 

 

 

I have begun to make friends. On this particular trip I stumbled into conversation with a young Texan named Marie. She has been living on the island for a year and worked up the street at another local establishment. This young lady is blessed with a smile that drives me wild; and I cant get enough of her accent. As we talked about our respective days, and nothing in particular, my attention was suddenly shifted to the beachfront access across the street.

 

One of Altamount’s most unusual clients – JD Aurosita, was pacing nervously across the street while staring out on the harbor.  He appeared as though he was anxiously waiting for someone or something to come ashore.  From what I have observed thus far,  I believe that like Peter Pan,  JD too has found his Neverland with allies and villains alike. Perhaps he was waiting for his own Tiger Lily to come off the ferry.

 

JD could be described superficially as an oddball hipster from Seattle. He came to to the island after a once “cured” testicular cancer relapsed in the form of torturous bony, lung, and liver metastases. When palliative radiation therapy and further attempts at chemo failed, he bailed on his life as a successful software designer and relocated to Altamount.

 

To me, JD appears as though he is consistently either pissed off, or quietly and secretively joyous – never in middle of the road and simply relaxed and comfortable. Given the situation,  I guess it makes sense.

 

He carries a small backpack everywhere. Within it is a mechanized pump that delivers continuous pain medicine to him through and intravenous line. I am not sure he could live without it. The small backpack and the tubing that comes from it only adds to his unusual appearance.

 

I excused myself from Marie with a wink, and walked toward JD…

 

“Hey what’s happening man, can I get you a beer?” I asked.

 

Tuning quickly as I approached, he grinned and replied. “I’m more of a gin and tonic kind of guy if you’re buying…” I was pleasantly surprised by his response. It seemed like an “in”… So I took a chance…

 

I considered how buying him a cocktail was fundamentally wrong (with the steady stream of morphine going into his system and all); but it was an invitation that took two weeks to materialize. I really wanted to get on his good side, after all no one on the staff had been able to connect with him thus far. We walked back over to the bar together and I ordered a round.

 

“So what are you up to this evening,” I asked candidly.

 

“Just getting some air… I needed to get away from the villa. Jamie was pissing me off today…”

 

Not wanting to overstep my bounds, I sat silently to see if his venting would open up more of his story. “She was bitching about something or other, like she usually does; it really gets me fired up…” He began to appear more annoyed, so I didn’t pursue it further. Within seconds , he had finished the drink, and was shaking the loose cubes and lime against the side of the clear plastic cup.

 

Already presuming to know his response, I offered, “I am going to be heading back up to the villa after I grab a burger, do you want to head up with me?”

 

He thanked me for the drink, and said he was set to get a ride back up in a while.  He walked off and disappeared between the buildings heading towards the center of town. Once again JD’s true shiftiness came through.

 

It irks me that JD never looks people in the eyes, he’s fidgety, and I’m pretty sure he doesn’t sleep. I routinely see the lights on in his room at the villa when I come home after being out for the evening. Although the residents have the freedom to leave the property on daily excursions, usually the Simon’s prefer if they have someone with them… JD rarely did.

 

The Simon’s must have had him sign some type of disclaimer stating that if anything were to happen to him off the property, they would not be found negligent. They were understanding of his need for independence, but also aware of their own Hippocratic responsibilities.

 

My attention promptly turned back to the bar stool where I had left sweet Marie hanging…

 

Thankfully she was still there, magic smile, sweet accent, and all. Unfortunately now she was getting acquainted with some clearly drunk, knuckleheaded, greaseball tourist. His level of sunburn and outrageous slurring was particularly impressive for this time of day…

 

“Probably should have seen that one coming”, I said out loud to an uninterested and unsuspecting passerby…

 

I made my way back up to Altamount.  I started off walking through town, up and over the large hill.  It was a slow walk. As the public transportation system here seems to rely heavily on hitchhiking, I decided to throw out my thumb and catch a ride.  I was in luck as a couple of guys in a weathered blue pickup pulled over and had me jump in the back. Clearly this rig had some upgrades, including home made brazilian hardwood foot rails, and a couple of well mounted  beach chairs in the flatbed designed for just such a service. They delivered me home.  As I later found out, it was the bar owners of Larry’s who gave me the ride.

 

 

 

 

Entered days later (May 20, 2008) 

 

It wasn’t until I had several other meetings with JD that I began to notice my own diminishing tolerance for his anger. Regardless of how I felt before our encounters, my threshold for experiencing frustration and negative emotion was always lower afterwards.

 

At some point Peter (JD’s lead physician) suggested that my own psyche might simply be responding to JD’s unspoken feelings. He commented that anger is clearly a common emotion expressed by those living with life limiting illnesses. When confronted by the anger, it is normal for the caregiver to either get angry in return, or to simply and totally withdraw. This made sense. It also helped me realize why I was reluctant to visit JD in his final days. The strange part is, that I never specifically felt as though he was directing his anger at me or anyone else.  Despite his intention of inward emotional projection, it seemed infectious to all around him.

 

There was clearly a lot for him to have been angry about. He was young, had been successful, outgoing, and popular in his life before cancer. I also suspect he had much to fear. You could see it in how he acted. Whether it was fear of the unknown, of the pain from his metastatic disease,  of losing control of bodily functions or cognition, or something else.  I soon realized it (fear) was there  – and it was huge.

 

Fortunately the Simon’s put me in touch with some literature of how to approach negative emotions and maintain empathetic interactions despite them. In hindsight, it would have been very helpful to know these strategies earlier – Like even before coming to this place. Everyone should be taught this stuff.

 

Had I been equipped with such strategies earlier in my life, I wonder how I could have developed my own rage into positive energy and momentum. Perhaps I wouldn’t be here.

 

Tamed

The young girl was curious…
Why would a young elephant to be tamed,
First be tethered to an aged, docile companion.

Would the wild not rebel,
And enrage the smoldering embers
Left burning within the heart of the aged beast?

Would this not cause
A disturbance in those forces
That inspire both man and beast alike?

As days passed, with girl
Observing with both eyes turned outward,
She began to understand elephant’s nature.

For she is a social animal,
Simply defined by her connection
With her community.

Wild would become tame,
And tame would become wild.
And in that moment, when Truth was evident,
Girl smiled knowingly as she reached for her father’s hand

 

 

***********************************************************************

 

 

So far the position is not nearly as glorious as I had first envisioned it to be. Although, I am affectionately referred to as the “med student,” by the residents and staff, I can think of many other names that could characterize what I’ve been doing the past few days. Pool boy, line cook, village idiot, and now gardener come to mind. I suppose even paradise has infrastructure that needs support.

 

Today’s task: weeding and spreading bark mulch in one of the upper gardens. After three hours hunched over in the equatorial sun, with only the occasional relief from the warm breezes, and a warming bottle of Gatorade, I felt the heat getting under my skin. Fluids weren’t getting in as fast as they were coming out, and my psychic irritation grew like the weeds that I was trying to pull. My nerves peaked, I got dizzy, and then I began to cool.

 

As I wiped the relentless sweat from my brow, I heard a familiar melody rolling through the trees. Once I convinced myself that the eventual delirium of sun stroke wasn’t setting in, I recognized the sound as chords being strummed from an acoustic guitar. It sounded as though it was coming from the clearing by my cottage. My curiosity soon became motivation, and I followed the waves of sound to their source.

 

Sarah sat bare-footed and cross-legged under an umbrella. She was wearing a breezy white sundress and a ten gallon cowboy hat. She was playing an old acoustic guitar and she was clearly playing her heart out. As her fingers effortlessly slid up and down the bridge, soothing notes escaped outward.

 

They moved towards the sky up above and fell to the sea down below. The birds overhead seemed to sing a harmonious back-up, offering their collective hymn to the world that Sarah was addressing. Trying not to interrupt her flow, I slowly walked toward the bluff where she was directing this universal symphony…

 

“Hey there Mark,” she smiled. “You know  it’s gonna cost you ten bucks for admission”

 

“Only ten?” I smiled back.

 

Under the brim of her over sized hat, she squinted up at me, “Yeah, I’m charging by the finger today.”

 

“Mind if I sit for a while and take a break, this weed pulling business is for the birds.” Still smiling knowingly, she nodded and welcomed me down.

 

After some small talk and bullshitting about how things were going so far, I asked, “Sarah, can I ask you a question about your cancer?”

 

Thinking for a minute while still strumming her black Aria guitar, she looked up with a smile that I will never forget, “Sure Mark, but keep it light; I’m on dinner duty tonight, and I don’t want to look like I’ve already been peeling onions. Jamie gets upset if I’m not on my game up there.”

 

I knew we’d have a chance to talk more again later, and we certainly had a good vibe between us. “What helps you stay so positively warm? I mean with a smile like yours, I feel like you know something that most don’t…”

 

And out it came again… Glowing… Turning around and looking up proudly, she pointed to the distant horizon. Though it was only 4:00pm, the faint white hue of the nearly full moon was strengthening in the distance. “You see that Mark, the moon is out during the daytime…”

 

I didn’t get it…

 

She continued, “when it gets hard, I just think about that…The way I see it, if you and I can see the beauty of the Moon and the Sun at the same time here from on Earth, just imagine what we can see from our view in Heaven…” The words and image will stick forever to my brain.

 

From what I’ve witnessed over the past six days, I can say that Sarah James is the most amazing sixteen year old that there has ever been. Her grace, understanding, and resilience are like nothing that I have ever seen – but she is a teenager none-the-less.

 

I remember being sixteen; pimpled face and pissed at the world; falsely thinking that I had my life under control. How could she appear so calm and at peace with everything that has happened to her?  Selfishly I am beginning to think that she has something to teach me.

 

Sarah and her father Matthew came here a month ago by way of San Francisco. They arrived to the island after multiple rounds of body numbing chemotherapy, and intensive radiation treatments, forced them to reluctantly accept the terrible fate of Sarah’s progressive brain tumor. Although she was in better shape now then she was at diagnosis – She had not wanted to put herself through more. All efforts had proved to be futile in halting the progression of her tumor.

 

Nine months ago, Sarah was told that she had a glioma, a tumor affecting the brain stem. She was initially diagnosed after succumbing to persistent morning headaches that made way for intense nausea, vomiting, weakness. Once Sarah was diagnosed, her father had a hard time forgiving himself for ever thinking that her symptoms were psychosomatic. The guilt of this denial led him to mobilize all possible resources to ally with her fight against this cancer. The drive to find his beloved daughter the best pediatric oncologists that the United States had to offer, soon consumed his day to day life. Ironically as CFO for a major health maintenance organization, he certainly had the pull to get the best that is out there.

 

Matthew had been professionally successful on the west coast. He held a high powered job, and financial security. He and Sarah had both lost the Love of their lives, Wendy (wife and mother), when she was killed in a car accident in the fall of 2002. Sarah, who was barely twelve at the time, lost her mother, her childhood, and her faith, all in one intense flash of bending steel and splintering glass. From that point on, things would somehow be different.

 

As hard as Matthew tried to be Sarah’s remedy for a mother lost, his own feelings of grief and uncertainty led him to his own psychic and emotional isolation. I wonder if these same feelings also allowed Sarah to come to terms with the reality of her own eventual death.

 

 

 

Entered weeks later (June 21, 2008)

 

Anticipating the devastation her father would experience when she died, Sarah asked that we spend time devoted to preparing Matthew for what was ahead.  It was with this peaceful awareness that Sarah gave him an amazing final gift. It was also this anticipation and request that further established her in my mind as the most remarkable teenager ever. Somehow she was OK – and I believed it.

 

I am beginning to recognize the enormous role that anticipatory guidance has for our patients and their families. For them it provides expectations and clues as to how things are progressing through the dying process. It also provides us a framework of signs of discomfort or distress to look out for that might otherwise go unrecognized.

 

In this type of environment most dying patients experience a stereotypical pattern in the hours/ days before death.  Although there is no exact timeline, or certainty that specific signs will manifest, it is information that we can mobilize in an attempt to prepare everyone for what they will experience or witness.  Sometimes providing this information in an empathetic way is more powerful than any pharmaceutical kept on the shelf, or delivered to someone who is suffering.   

 

On Sarah’s behalf,  we described to Michael that in her last days she would begin to withdraw and sleep more. She would become less aware of her surroundings and gradually begin to separate from the world. Despite this, she would want him to be present and talk her through what was happening. Sarah wasn’t the type to want to miss out on anything.  Eventually she would become disoriented and perhaps even restless, but we had medications to help that.

 

We detailed that she would become less interested in eating or drinking, and that was alright. By not feeding her, we were not starving her, or expediting the process of her death. We were merely accepting the notion that her disease wouldn’t allow her to comfortably take in solids, and drinking would only exacerbate coughing and aspiration. Her coughing would make her headaches worse.

 

We told him of physical changes he would witness. Not to torture him, but to prepare him for what was ahead. If he saw her breathing change pattern, then he would know it didn’t mean she was in pain or distress. It was actually reflecting the slowing communication of her nerve impulses from her brain to the muscles that help her breathe.  We spoke of the sounds of the breath evolving towards a expiration that would sound wet, as if she was breathing under water.  He knew then, that it was simply oropharyngeal secretions draining down and pooling in her upper airway, and she was not distressed by these as she was not conscious of them. It reassured him to know she wasn’t going to “drown”.

 

We outlined signs that the end was near, like superficial circulatory changes noted in mottling of the skin, and diminishing urinary output as a general measure of her kidney function. Noticing these things, it gave him some sense of what was happening. It was a cruel but helpful knowledge that allowed him some sense of control as his life seemed to skid off its own tracks.

 

All said, Sarah experienced most of these signs in the hours that preceded her death. Personally I feel like Matthew really benefited from our counsel.  Once he started to talk again sometime later  – He confirmed my suspicion

 

 

Things are settling in nicely. Now physically at the hospice, they’ve situated me in an amazing one bedroom cottage. It sits cliff side on the far western part of the property. The repetitious yet constant sound of the breaking waves flows through the windows and renders me entranced. So far, the people here are downright kind, and I am already encouraged. If last night is any measure of what I am to experience, then I am right where I need to be…

 

A familiar, though indescribable, feeling has started to grab hold of my senses this morning. My father’s memory has been drifting into my consciousness with increasing frequency the past few days. Today I feel closer to him than I have since far before he died; maybe the closest ever. I am beginning to trust the idea that I am being guided by his grace. With this notion, new warmth rolls in my chest, tumbles up my neck, and into my head. Skin and hair both rise to capture the heat, making myself seem larger than I am. It could just be last night’s rum talking, but my head definitely feels a bit larger than it should be today. When my head gets too big, the only thing I can do to decompress it is write – sometimes it takes the form of a poem.

 

 

***********************************************************************

 

 

Learned and Wise

 

An event takes place that changes minds;
Some call it fate, showing its sign.

 

Others see it too, with eyes opened wide;
And claimed that it grew from relative time.

 

Some say it is God, dealing His hand,
Giving beauty to reason over His lovely land.

 

Many call it logic, programmed and planned;
Expecting an outcome, a winner of chance.

 

Greatness is seen
By those who can see
The beauty in Nature
That shows constantly.

 

Observing is capable
By people who need;
A sight to behold,
An idea that could seed.

 

Unfolding life
Is beauty through eyes
That comes from a soul
Learned and wise.

 

 

***********************************************************************

 

 

After joining up with an impromptu bar crawl through downtown on Friday night, I awoke to the relentless clanging of steel drums. Apparently the God-damned resort has a live calypso brunch every Saturday morning. I appreciate the festivities, but there was no mention of this when I checked in. I remain indebted to the makers of generic ibuprofen, and grateful for my complimentary bedside spring water.

 

There is nothing quite as unnerving as the combination of the smell of burning spinach and onion quiche, the fuzzy taste of a rum hangover, and the sounds of a local steel drum band covering Legalize It. I can’t even begin to describe the wrathful punishment that I was ready to inflict this AM when my senses exploded and woke me from a deep slumber.  My initial rage slowly dissolved as I realized it was 10am already, and it WAS Peter Tosh they were playing.

 

Once I stumbled out of bed, I soon realized that I didn’t have to be at Altamount for several hours. I had to fill the time gap, and I needed to get myself sorted out beforehand. I certainly wanted to make a good impression.  I am aware of no remedy equal in efficacy to that afforded by a morning swim in the universal solution (the salt water). In my book, it is the one true medical panacea.   When my room eventually stopped spinning, I jumped in a taxi that brought me over to Cinnamon Bay. A walk down the beach, and a long floating session in the 80 degree water turned out to be just what the doctor ordered.

 

After lunch I became rather anxious anticipating my first meeting with the hospice team. Evening slowly crept in like a nervous cat after shaking the tin containing her favorite treats. You can hear her coming, but you’re left to wait for things to get cool before she moves closer.

 

Check-out time had come and gone already, but my anxiety was still surging. I still needed to get right and even before dinner. I required two hundred sit-ups, one hundred push-ups, and a cold shower. This was my  go-to self prescribed measure to mitigate most panic attacks from developing.  Sometimes it works. Sometimes I need to add a shot of tequila to the mix.  I slid on my backpack, reached for my suitcase, and trusted the faith that I had on hand. I decided to take the mile walk up to the property. Cautiously I took to the road slowly hiking its oscillating grade.

 

 

 

 

As I approached the driveway to Altamount, I was at first taken by the amazing flowers and the thoughtful landscape design. Hibiscus and oleander flowers made for stark contrast to the yellow cedar and cactus that are exploding through the gardens everywhere. There was a cock-eyed iguana that appeared to be the security guard on duty. He sat contently under the entrance sign – seemingly with at least one eye on everything. The driveway wound slowly upward around the perimeter of the property, giving me a chance to look around.

 

Just as the silhouette of the main house came into sight, I walked upon an older woman in a straw hat. She was gently picking flowers out of a raised garden bed on the side of the driveway. With a bright smile and a wooden basket full of lush reds and purples, she sang.

 

“Welcome to heaven, beautiful.”

 

I’ll admit, not the welcome I was expecting, but she obviously meant it. My teeth came out ear to ear. She welcomed me,“My name is Phyllis, and you must be Mark…”.

 

Immediately I wondered how she knew my name, and who she was. But before I could entertain any of my fantasies, she yell-giggled, “I’m so glad you’re with us!”

 

I have to admit, the voice that I heard coming from Phyllis was not the one I was expecting to hear. Being in the islands, my mind is prejudiced to think that every black person I come across will have a distinct Caribbean accent. Not Phyllis though, her voice resonates with a slow southern drawl.

 

As it turns out, Phyllis Jackson is actually a client at the hospice. She happened to be out picking some flowers to place as the table centerpiece of tonight’s weekly group dinner. Sensing my nerves, she took me by the hand and led me up the main house.

 

On our way up, I took the chance to relate to her slow, loving, southern charm, with my quick, cunning, northern wit. Immediately, I could tell we had a connection.

 

As we walked slowly, Phyllis disclosed that she was a retired waitress from Newport News, Virginia. She had been diagnosed with a localized pancreatic cancer four months ago. She mentioned that she had now been here for three “glorious weeks.” She also let me know very early in the conversation that her son was none other than Theodore Jackson, a rookie running back sensation for the Buffalo Bills.

 

By getting her here, Theo was “taking care of his mama”. After all, this place seemed the best at what it was; and so had she been to him… No expense would be too much for the good karma this woman had coming her way.

 

Come to think of it, I remember a Monday Night Football story on Theodore “Action” Jackson, in which the color commentator had actually referred to Phyllis’s situation indirectly. Holy shit, here she was, guiding me on my way ahead.

 

I asked her directly, “Phyllis, how do you make sense of this place?” I think maybe she assumed I was inquiring about her understanding of her illness.

 

She replied, “Honey, this place ain’t about me understanding it…It’s about it understanding me… I have spent my life loving all that was right; singing praise to my personal savior Lord Jesus Christ every morning since I was a girl… My life, as hard as it ever got, was never more than providing for my family… And honey, as what goes around comes around, my boy’s taking care of me…”

 

Her reply really didn’t get to answer my question, but certainly I couldn’t argue with her fatalistic logic. After all, it is part of what’s helping to keep her sane in this presumably insane time in her life. I thanked her, and gave her probably the first hug I had really given to anyone in a year. It felt right.

 

After initial greetings with the Simon brothers, I was escorted over to the biweekly family style dinner they had for the clients, staff, and their families. Phyllis kindly went out of her way to introduce me to everyone. There are many names to remember. 5 clients (3 of them with families present), and 7 staff members participated in the meal.

 

I sat next to Andrew, one of the doctors, and co-director of the hospice. He seems to be a charming and rather boisterous spirit. He also seems to enjoy the wine. It was no long into our first conversation that I was sure that he knows his stuff.  I think I learned more in 30 minutes of talking to him about cancer than I did in my entire hematology/oncology curriculum in my first year of med school. I know I will learn a lot from him.

 

On the other side of the table sat Sarah James; another of Altamount’s clients. She is a sixteen year old girl from northern California. She has been living with an inoperable brain tumor. You might never know by just looking at her.

 

Everyone was welcoming. Everyone talked to me. I was encouraged and all of my previous anxiety was totally replaced with hope. With the genuine smiles that I could see around the table, I could hardly tell there was sadness in this place. I don’t quite understand it from the outside looking in.

 

The patio where we sat faced the setting Sun. The massive dark orange orb fell quickly over St. Thomas, leaving only opalescent clouds and the faint early evening stars to watch over us. When the distant lights of the neighboring island came on across the water, house by house, we all shared our stories.

 

I listened intently to theirs, and then disclosed my own. I tried my best to describe who I thought I might be and why I had come. For some reason, I think they already knew.

 

 

 

Entered weeks later (June 7, 2008)

When I had first encountered Phyllis in Altamont’s driveway, her social graces totally distracted me from the evidence of her pathology. It wasn’t until we had several other encounters in the days that followed that I began to really notice the effects of her progressive malignancy.

 

In the setting of her metastatic pancreatic cancer, her liver was being affected. With dark skin, it was hard for me to appreciate her elevated bilirubin, until I looked into her eyes. It was clear that the usual white sclerae, were actually getting more yellow. Her belly was distending, and she required repeat paracenteses (drawing fluid out of the abdominal cavity with a needle) with increasing frequency. These changes didn’t stop her from going out and gardening. It was her eventual change in cognition that did.

 

In her final days, Phyllis experienced significant mental status changes which required several medications in order to keep her calm and comfortable. She began to demonstrate disorganized thinking, disorientation, hallucinations, and increasing periods of somnolence. The Simon brothers thought it was most likely due to an encephalopathy related to her liver dysfunction. They also relayed to her family that there were other factors influencing her ability to think clearly including the medications they were using to keep her pain free.

 

Detailing Rita’s condition, the doctors introduced a new term to me.  It was something called “terminal delirium.” They noted that most patients experience some degree of cognitive function loss in the week or two before death. Terminal delirium is a sort of  blanket term used to describe a constellation of symptoms. It encompasses the most common causes of delirium including (but not limited to) medications, metabolic derangement, infection, and/or CNS pathology. This description was helpful for the family especially to normalize her experience. Appreciating how sharp and socially engaged Phyllis was, it was so hard for them to see her in this way. What she became was not her. In a humorous interpretation of the concept, Phyllis’s daughter commented that “Terminal Delirium” would make a great title for Tyler Perry’s next airport comedy. S

 

It was a blessing that with medication support (haldol/thorazine), and non pharmacologic treatments mobilized ( reducing environmental sensory stimulation , frequent reorientation, and having familiar faces and items present), Phyllis did not suffer. Her family surrounded her in love and prayer in those final moments – and perhaps that was the most potent treatment to keep her present and calm.

 

I think that I have found paradise. This morning I find myself high atop one of the mountains overlooking the main harbor town on the island.  I look westward to see the Sun shining over lush greens, and delicate blues. The clouds are everywhere, making my heart beat a little faster with each moment that passes.

 

I hear the bustle of the island seaport, and the hustle of those people that call it home alive in the town below. I feel the warm touch of the gentle trade winds, like the fingers of a beautiful woman running lovingly through my hair.  Perhaps it is these beautiful surroundings that has me waxing romantic, or maybe – and most likely – it is because I hiked up the trail too fast…

 

Yesterday I made it over to Cruz Bay, St John,  from the St Thomas airport without much difficulty. I bargained my way onto a crowded taxi that was headed to the Red Hook dock located on the far side of the island.  In this process I learned two things  (1) seat belts are a good idea around here, and (2) I surely have some things to learn about when it comes to negotiating my fare.

 

 

From  the dock it was a thirty minute cruise on the ferry across Pillsbury Sound. Once on board I was immediately hypnotized by the vibrant hum of the diesel engine powering the boat below. My attention was quickly transfixed on the hoard of school children who wildly danced around the boat on their way home from another day of learning. This vehicle certainly beat the giant yellow bus that I was accustomed to in grade school.

 

Soon I was carried beyond imagination as I looked around and experienced the grand views of these islands. I was awestruck watching the lush green mountain peaks breaching through the smooth surface of the pristine turquoise sea.  When we eventually arrived at the dock there were friendly faces waiting to greet those who disembarked.  There was even a spot to sample assorted rum drinks for the new arrivals.  This was a genius local tourism ploy.

 

Making my way through the wharfside village, I stepped into a dimly lit and smoke filled bar to get a beverage to celebrate my arrival. Then it happened. My first on-shore beverage was exactly what I needed; a “painkiller”. Made of sweet local dark rum, orange and pineapple juices, mixed with a kick of coconut syrup, and a touch of ground nutmeg – it was a formidable mix. My weapon of choice was now in hand, and I was ready to storm the island. It was time to invite the creature out.

 

Last night was my first night in port. I opted to stay in rented room at the local Westin Resort. Certainly it was a high priced affair; but it was only going to be a couple of nights before I would be settling into a several month commitment  designed to get back on track with my medical training.

 

I needed a good restful sleep, and I fortunately had the money and time to spend. The room turned out real nice with open air breezes through the louvers, and an unblocked view of the pool. There is lots of energy in this place – I can feel it deep in my chest.

 

After a refreshing swim in the warm ocean, another couple of “pain killers”, and  a taste of the wildest mahi I have ever eaten,  I retired for the night. I had to reset my circadian clock, after all I was now re-synchronizing from Irish time.

 

 

 

 

 

Today I started hiking at 7:00 am. Two hours into the national park hiking trails and I’m stoked. I take a deep breath and feel more alive than I have in months.  As I look down on this unfamiliar island that I will soon call home, I open both eyes outward.

 

I become aware of the wooden bench that I am sitting upon. It rests under an unusual four branched tree; certainly a non-native that was transplanted here sometime in the past. It shades my scalding skin, and whispers promises through its budding limbs.

 

The bench reminds me of the importance of taking the time for outward observation. Clearly there is much to be taken in, and in this landscape my eyes are drawn by forces other than my own.

 

I take a deep breath and turn both eyes inward… I begin to meditate on what lies ahead as I make my way over to Altamount Hospice tomorrow. I am scheduled to meet with the Simon brothers and the facility’s staff for dinner tomorrow evening. I feel pretty anxious, but something in their voices over the telephone, seemed very calm and welcoming.

 

In the meantime, tonight is the night to check out the downtown area, and see if I can’t network with some of the locals. From what I’ve seen so far, there appears to be a pretty young crowd around here, and a lot of New Englanders…  Based on what I saw coming of the boat, as long as I wear my trusty, worn in Red Sox hat, I should blend right in…

 

 

 

 

Notes on hospice :

 

I became aware of hospice at an early age. When I was eight years old my mother died. She lived for only a couple of weeks after after experiencing a devastating and totally debilitating stroke. Before she passed, my father brought her home from the hospital for her final days. She was a private person and hated hospitals. He knew that she would have wanted to be at home in the end. I have a hard time recalling all the details clearly, but I distinctly remember the nurse that came to the house.

 

I recall the hospice nurse projecting an alarming calmness – one of those really warm angelic types.  She would always be giving my silently uncomfortable mother medicine that would allow her to rest – and close both eyes. This personal care and thoughtful process  was certainly not something my dad had encountered in his death. His end was quick, unexpected, and fortunately without any suffering. The medical examiners report detailed that he had a massive heart attack resulting in sudden cardiac death.  I knew that he had past heart issues, but never fully knew the extent of his illness until after his death.

 

Given this gruesome family history, it is safe to assume that I should stay out of McDonald’s and lay off the Marlboro’s moving forward. This reality has also driven me to pursue my current path in career, and now to find meaning in this developing adventure.

 

Not wanting to appear as a completely naive medical student, I have jotted down some points of reference to help me get into the hospice mindset as I embark on this new experience. Fortunately there are some good websites that have allowed me to provide the synopsis below….

 

Hospice care is a philosophy and practice of medicine which accepts death as the final stage of life. It focuses its efforts on the palliation of symptoms that someone with a life limiting illness may face as they approach death. Symptoms can be physical, emotional, spiritual, or social in nature. The ultimate goal is to enable patients to continue an alert, pain-free life, and to manage other symptoms so that their last days may be spent with dignity and quality, surrounded by their loved ones.

 

It can be said that hospice care aims to affirm life, and does not hasten or postpone death. It treats the person rather than the disease that they live with. It focuses on the quality rather than length of life. It provides family-centered care and involves the patient and the family in making decisions.

 

Hospice care can be given in a number of settings. It can be provided in a private home, a hospital, nursing home, or private hospice facility. The majority of people who receive hospice care experience it in the home; with family members serving as the main hands-on primary caregiver.

 

Medical treatments that a patient may receive under the hospice benefit are based largely on individual cases. They may even include treatments that may be regarded as curative – like antibiotics, chemotherapy, and intravenous fluids – as long as the goal of these modalities is to improve quality of life and comfort.

 

The main caveat of hospice is that it traditionally is reserved for patients that are diagnosed with a life limiting illness, and are not expected to live longer than six months.  The typical illnesses that people face associated with hospice care are cancer and AIDS, though stroke, end stage heart, lung, and renal disease are diagnoses becoming increasingly utilized.

 

Many hospice organizations have their own inpatient facilities, where care can be  provided for the patients who cannot get it at home. These are often the patients with refractory and difficult to manage symptoms in the home environment, and/or in situations where there is limited care giving support at home. These facilities are run by specially trained staff that is versed in caring for the terminally ill.

 

Some patients believe that remaining in their home to die would be too difficult for the family, or feel a need for privacy in front of their family. Having care provided in a facility allows the family to remain “family” and not assume the role of “clinician and provider” at the bedside.  Some families have no problem providing the nursing care necessary, while others cannot bear the experience of their loved one’s decline and pain or suffering.

 

 

Hospice Foundation

 

Hospice Info

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

By way of Dublin, Ireland I find myself at thirty-five thousand feet above the Atlantic Ocean. Currently we are en route to Cyril E. King Airport on St. Thomas – United States Virgin Islands. It is just over nine and a half hours of flight time (and one short layover) until I am there.

I am deep into the process of developing a strong mistrust for airplane food. As graceful and calming as these flight attendants make themselves out to appear, I am fairly certain they are trying to kill us with these awful prefabricated meals.  I read that low air pressure and humidity can alter taste buds, though I am sure this is a deliberate attempt at misinformation that the airlines have created.  It is certain that the limited ability  to taste sweet and salty flavors at altitude is a clever and convenient myth concocted by some evil genius chef who works for American Airlines.

The wait for use of the bathroom is lengthening. The current line dwellers appear panicked and seem to be quickly growing more restless by the minute. Considering my recent meal, I am concerned that when the inevitable occurs and I need to hit the can, I’ll need to bypass the line… It certainly could get dramatic…

Other than the terrible Dakota Fanning movie playing overhead, the only things keeping my mind off the now deep and horrible sounds resonating from my bowels are the erratic clicks of my pressured typing, and the promise of where I am headed.

My current journey began two weeks ago. After a somewhat inebriated and heated conversation with a stranger took an inevitable turn for worse,  my fate quickly began to change.   I believe it was “lady luck’s” boyfriend that hit me square in the face outside of the Beggars Bush Pub in Dublin. Apparently I insisted on paying my ‘drunk tax’ right on the chin that night. After a well deserved uppercut found my seldom complimented jaw, I saw my chance amid the stars.

In an effort to slow the bleeding from some toothy area in my numbing mouth, a good Samaritan handed me a copy of the Irish Times newspaper. Now I was certainly not a doctor yet, but at the time it seemed like an appropriate pressure bandage.

Somewhere between the rhythmic throbs of a swelling gum line, I caught glimpse of bright red blood dripping onto the “Life and Culture” section. The expanding drops led to a report on a destination hospice retreat that is located in the Caribbean Islands.

As many of my recent late night explorations have led to searching for deeper meaning in the mundane, I stumbled back to my rented studio apartment. There I sat silently and tried to make sense of the article’s commentary amidst the now darkening blood.

The article I read detailed a unique volunteer opportunity geared towards medical students and clinical providers alike. It appealed to those interested in pursuing practical education and training at a palliative medical practice in a destination setting.  The upside for the volunteer was huge. Beyond the obvious amazing accommodations, it appeared to be a poignant and unparalleled immersion experience. I suppose it also seemed that they were looking for some good (cheap) help down there .

At first glance, I read the article as a help wanted ad promoting some upscale death boutique for the classy and unloved. But shit, there I was with a numb mouth, half a pint of Guinness on my shirt, and a fear of impending doom. A remote tropical island, some sense of direction, and a new chance at perspective on life – What did I have to lose?

The following day I emailed the contacts cited in the article from the Times. Peter and Andrew Simon were two brothers from Maryland, who are the physicians and co-medical directors of Altamount Hospice Inc. – USVI.  In the article they came across as truly passionate about what they’ve created.  It read as though they are really enthusiastic about teaching others what they do.

Serendipity revealed herself as our email thread grew. They had a spot open for a learner, and the post-doctoral psychologist from Chicago (who was supposed to be joining them) suddenly couldn’t make it.   After several more emails and a phone interview,   I said the right things.  I also had the audacity and means to get on a plane in a moment’s notice. The window was opened!

 

 

 

 

Next stop warm weather…

Now with this prospect, I feel as though there is charge coming back into my batteries. What about this notion that things happen for a reason? I mean hell, the bloody Irish Times, a newspaper that two months earlier ran my father’s obituary in it… I realize it’s a stretch, but I am chalking this coincidence up to being a good omen…

This sabbatical that I am floating towards among the clouds creates the perfect environment for a new and heightened anxiety.  Will I be able to handle it??? I am not sure. I haven’t really been open to acknowledging my fears lately. I haven’t even cried since my father passed. I guess this trip could grant me some way back into my life and future career, and hopefully back into my right mind.

One of my present fears is more about the culture in the islands. Clearly I had a hard time connecting with the good people of Ireland. My own blood – from a common ancestral home. How am I, an awkwardly nervous white boy, going to fare with a bunch of irie feelin’ natives?

From what I can appreciate by the virtue of Google, and an obsessive compulsion for detail, Altamount Hospice is situated on the Island of St. John, in the United States Virgin Islands. The facility appears to have been born from a subdivided estate originally owned and operated as a sugar plantation in the distant past.

On four acres of seaside land, it supports a reconditioned six bedroom villa, and four associated cottages. There is evidence on the website of a giant infinity pool, and of magnificent terraced gardens throughout the grounds. It appears to sit on a westward facing peninsula that invites the soft Caribbean Ocean tides and a blessed view of the sunset over the neighboring island of St Thomas.

According to a Wall Street Journal article that I found online, “since its inception in 2005, Altamount Hospice has provided expert and compassionate support and accommodation to those who desire an end of life experience in paradise…” The article went on to describe that the actual main villa as being “the first of its kind,” being designed by architects, palliative care physicians, and its clients to be purpose built for those transitioning out of this world.

Sounds classy… I suspect, in this era of open access care and increasing numbers of wealthy “for-profit” hospice facilities emerging, that this place doesn’t cater to those who define the masses of society. The clientele must already have enjoyed the collection of tangible treasures that wealth brings to a person.

As the sleep aid I took thirty minutes ago is beginning to kick in, I realize I’m out of whiskey. My typing is becoming errant, and I’m longing for the rum. I reach for the antacid in my pocket and press the call light…

The rest of the flight should be a breeze…

 

From time to time, in the challenging moments of intense self-reflection, people will look deeply into themselves. They search for evidence of those experiences that may have granted them hope in the past. We naturally scour over our memories, trying to identify and reconnect with those instincts that served to get us through tough times before. Perhaps these strategies, if summoned, could help us again…

Often if we are patient, we can remind ourselves of our personal capacity for these instincts; though other times, someone or something else does the reminding…

 

When my father unexpectedly died of a massive heart attack last year, my mind went blank, despair rolled in, and I surely needed  some reminding. I quickly found myself looking back upon my life for answers to questions that I had not yet built the courage to ask.

At the time of his death,  I was at the tail end of my second year of medical school. By all objective accounts I had been doing well for myself up until that point.  It was this event that triggered my own downward spiral.  The once manically wide-eyed, curious, and energetic version of myself quickly devolved into something much less ideal.  I started  turning inward, isolated, and angry. The world that I had created, full of promise and hope, was suddenly changing.  With my sense of purpose waning, and my illusion of control completely dissolved, I got scared. I was truly terrified.

My initial reaction was to take a temporary (and voluntary) leave of absence from my studies. This was in an attempt to regain mental composure.  During this hiatus, I moved into my father’s house 25 miles north of  Boston – on the North Shore.  It was a modest and appreciated inheritance that revealed itself after the execution of my father’s will.  Without siblings or a living mother, the keys, the deed, a life insurance check, and the remains of a home came sliding across the lawyer’s desk and into my trembling hands.

Within only a few months, this strategy seemed destined to fail… I couldn’t stomach it. Being “home” was nice and all; there was plenty of distraction to help with my anguish, but it just wasn’t the right place for my healing. I desperately needed to approximate the wounds of my now open heart, but my sutures were somewhere just out of reach.

It eventually got tough to breathe. Winter’s chilling winds and pervasive darkness made me want to jump head first into the ocean and keep swimming. I had to get out. I had to see things differently and challenge my mind. Say what you will about the delights of daytime television and cracking a cold beer on a Tuesday afternoon, but the brain that I had just spent two years and a hundred thousand dollars on was slowly beginning to rot, and I could smell it.

My static soul was out of oxygen, and I became desperate for inspiration. I followed my instincts and ran. In an attempt to get some fresh air, and to go looking for something that I knew certainly wasn’t in my past, I planned an extended trip to somewhere I had never been.  I set my sights on Ireland. It was an ancestral homeland that I had always intended to visit with my family, but never did. I thought perhaps my remedy would be found there.  It turned out eventually that I was partially right.

As a creative outlet and coping  mechanism, I have always kept track of my thoughts in writing. Being an only child growing up in a home where the parents didn’t subscribe to  television’s stimulating potential, I had to make quick friends with pen and paper. It was my only reasonable option. Every time I scratched some fleeting thought into one of my notebooks, my sense of isolation and anxiety would slowly diminish.  My imagination and concrete reflections would reliably provide all the company that I needed.

When I take the time to look back at my stories, reflections, rants, and raves  – I am usually amused, always interested, and occasionally horrified.Writing continues to be my preferred energy outlet and my personal vehicle to achieve balance. By journaling about my experiences, I have been able to document, look upon, and make sense of, that certain insanity that drove me from Boston, to where I am today.

Over the course of the eight months that I spent at Altamount Hospice in the U.S. Virgin Islands, I wrote with more purpose than ever before. It was here that I came to realize that this, once upon a time, mechanism for connecting to something outside of myself was now my strongest, and most reliable ally.  I have been able to capture some very important lessons that were granted there…

They were lessons of love, and of love lost…

They were lessons of the timeless and endless nature of this life…

They were the important lessons; but they were also not the easy ones…

I could not have imagined that what started in December 2007, as a grief and a chemically induced numbing of my senses, would lead to something so profound. It has lead me back to stable ground upon which I once again was able to regain my footing.  The experience allowed me to return to my studies with more purpose, inertia, and understanding than ever before .

 

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Heaven is eternal, earth everlasting.
They endure this way because they
Do not live for themselves.

In the same way, the wise person
Puts himself last,
And thereby finds himself first;

Holds himself outside,
And thereby remains at the center;

Abandons himself,
And thereby is fulfilled.

– Lao Tzu … Translated from the “Tao Te Ching”

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This blog  is a work of fiction. Names, characters, businesses, places, events and incidents are either the products of the author’s imagination or used in a fictitious manner. Any resemblance to actual persons, living or dead, or actual events is purely coincidental.

© 1 April  2016