Less than a year ago, I was chin deep in a pile of texts and hand-outs, frantically studying for my neuroscience mid-term. While using a Frank Netter human anatomy atlas for my pillow many nights, I would’ve never guessed that given a year – I would be floating in the warm Caribbean Ocean and enjoying a good novel.
It sure is a whole lot more inviting down here than in the dark and quiet insanity of a medical school library. For some reason, the books I have read on the beach seem to stick a bit heavier to my mind. I figure must have something to do with the added salt content.
The stories that I have really sunk my teeth into lately have been excellent fodder for my imagination. While in the didactic phase of med school, I grew used to painstakingly scouring through waxy pages of thick texts. My primary goal of content memorization. The current set up is so much better. I finally finished Moby Dick, for the first time. Up until last Saturday, I assumed that I had read it, but who was I kidding. I read a weather beaten synopsis, and authored a questionable C+ caliber book report in the 10th grade. As it turns out, there was a bit lost in the Cliff Notes interpretation.
Down here on island the “library” that I have been frequenting isn’t a library at all. My local book depository is actually a sailboat that belongs to a couple named the Moore’s. It is tied up just a stones thrown from the west side of the property.
The Moore’s are based out of Denver, Colorado. Daniel is a well known nonfiction writer, and Judy is a registered nurse. Judy works at the hospice, and is probably the most down to earth woman I have ever met. I have learned there is no bullshitting with this dame. She calls things like she sees them, and sees things like she calls them. Somehow she is generally spot on.
Judy and Daniel have a house on the East end of the Island but spend most of their days down on their beautiful forty two foot yacht. As it turns out, about thirty five of those feet are lined with amazing books. Judy told me there were about 3200 books in total, and they represented the favorites of their “collection”. Daniel jokes that they are their to act as a ballast to keep the vessel upright.
They bought this beautiful boat just after Daniel’s third best seller hit it big in New York. He authored a treatise on the European Union and its effect on the world economy. Despite the academic subject matter in his own books, Daniel was clearly an aficionado of fine literature. He also knows how to enjoy his books. I have never experienced a more amazing place to sit and read a book than on his boat. On-board there are several designated reading areas lined up on the deck and in the cabin. They also have a pretty impressive scotch collection tied down in the galley. That might further explain why Judy sleeps down on the boat most nights that she works at Altamount.
Daniel and Judy split time between the mountains and the sea. Judy has been down since August, and plans on staying through next May. I have to admit I am pretty excited that they both will be here through the end of my experience. I have learned so much from them both already; after only eight weeks. I know there is so much more to come.
Judy blew my mind the other day when she explained how in her earlier years, when she first became a nurse, she worked in the neonatal intensive care unit in a New York hospital. It was here that she fell in love with the vocation of ushering blossoming souls into this worldly life. She was a gift to the children and the parents whom she served for 15 years.
After Daniels writing career really began to take off,she took a break from nursing and traveled with him while he was promoting his books. Judy confided in me recently that she actually stopped neonatology because she and Daniel lost a child of their own during this time. It was too much for her to bear in an attempt to return working with the premature babies. It was far too close,and far to painful for her to continue.
Once she decided to return to work , she did some soul searching (and healing) and was reborn as a adult hospice nurse. Now she has fallen in love with the vocation of ushering blossoming souls faithfully on their course to the next realm of existence. I have never met anyone that has impressed me more than Judy. I believe she is the local shaman – she is a true psychopomp.
Having the afternoon off today, I took the opportunity to row over to the “library”. I was due to return the copy of Moby Dick, and pick up a new gospel of unconscious truth. I was thinking maybe I catch up on some Jack London, but it soon appeared that Jacque Cousteau was more appropriate.
When I pulled up to the sailboat, I could see that Judy and Daniel were busy at something on the swim platform at the stern of the boat. As I approached, they appeared to be removing an injured sea turtle from the grips of a fishing lure that she had lodged in her left front fin.
Daniel pulled the turtle from the ocean and held it on the wet platform as Judy quickly and gracefully cut the barb from her flailing arm. Once Daniel placed the turtle back to her own devices in the drink, Judy yelled over to me… “Hey Mark, Do you think we could convince Peter and Andrew to get rid of intravenous access in all of our patients?”
One particularly arrogant, and seemingly steroid injected ex pat that I ran into at the beach the other day , offered me this gem… “In their thirties, men find themselves; while at the same age, women find themselves losing their minds…”
At the time, I remember a mixed reaction from the group that he was with. It got a good chuckle from the guys, and a “protect your genitals” type of look from the girls. Either way, it started an interesting follow up debate among the group of beach goers.
This initial statement was clearly intended to throw spark towards what would be a gasoline soaked conversation. Reflecting back on my own questionable words, just prior to that fateful bar fight back in Ireland, I appreciate how much influence making a provocative statement can have on an interaction and an ultimate outcome of events.
As now I approach my thirties, my most common provocative statements have been self-directed, and primarily in an attempt to stimulate the way to “finding myself.” My faith remains that it will be revealed, but my anxiety and awareness is constantly challenging this hope. I’ve done the right things, and fortunately developed more positive than negative impact around me. As I become more familiar with my true self in time ahead, I pray for serenity.
During his thirties, Matthew James found himself achieving all he ever wanted in life. He had a strong marriage with his beautiful high school sweetheart, Wendy. He had an energetic and talented daughter in Sarah. He practiced a vocation that paid him more than he thought he deserved, and he loved it.
As the years passed, the walls of his once magnificent psychic castle started to crumble and fall. I guess the decay began shortly after Wendy died in that horrible car accident. Matthew had been left to pick up the pieces, and put them back together again for the sake of his family .
Now here he was at forty one, left with little more than the poignant memories of his long lost wife, and now his recently deceased daughter. He is a desperate castaway barely surviving on one of the universe’s most isolating landscapes, an island.
For the past seven months Matthew has lived here at the hospice with purpose. He has lived with steadfast resolve to focus his attention towards being present for Sarah. He knew she was dying, and needed to do all that he could to make sure that she wasn’t scared or suffering; regardless of what he might have been feeling. This was his way with her. It always had been . I am sure any father would be as protective. In her younger years his job involved ridiculous work hours that didn’t leave much room for ample quality time at home. Maybe he was even making up for opportunities lost in the past.
It has been just over three weeks since his beloved daughter Sarah surrendered to her earthy afflictions, and died in his arms. It is strange for me to consider a death beautiful – but hers somehow was. As peaceful and controlled as her passing was, the realization of its finality is now almost too harsh for Matthew to bear. As the days wear on, it appears as though he can barely muster the energy needed to breathe. His spirit has been deflated. Now only a rubbery form of what it was before, he finds himself unable to move forward. I feel so bad for him, but I have no idea what to say. It is just so awkward.
Matthew and Sarah had been living in another of the small one bedroom cottages on the property. Although it has been weeks since her passing, he still remains in it. He has paid the Simon’s for his extended stay, and is trying to pull himself together before the return flight to California. I think he’s only coming out for meals, and occasionally at night to sit on the bench overlooking the bay. Now that his daughter is gone, his cause is seemingly lost. I worry that his mind may be following close behind.
Judy, one of the awesome nurses that works at Altamount has been trying to talk with him daily and offer bereavement support. It has been impossible for him to accept this offer as his despair has begun to slowly but sharply transform into resentment. As patient as Judy is, she is getting pretty frustrated with him. She asked me today if I could try talking with Matthew. I reluctantly accepted the task, and put it off all day as I searched for the least uncomfortable words. It turns out there are none. All words that I can think of are inappropriate and feel awful. I was operating at a loss all day.
Embarrassingly, to be honest I’ve found myself avoiding interactions with him all together recently . It is hard even to think about what he must be feeling. In the 6 months that I have been here, there is a depth of cumulative grief that I am amassing. I am aware of it and it is tightly packed right under the surface of my consciousness.
Selfishly I feel like if I start to talk to him, all of my own grief is going to come pouring out – and shit, I need my head to be straight this week. I finally got a date lined up with this sweet Raven haired waitress from Tennessee who just moved to the island. The last thing I want to do is give her the impression that I seem as insane as I currently believe that I am.
In an effort to make my job a bit less stressful, I grabbed a book from Peter’s office concerning the bereavement process. It has been helpful to read. Although many of the concepts outlined are fairly intuitive, I wish I had access to them years ago.
In reading through it, I have learned that while there is no standard for what is healthy and unhealthy in the bereavement process, there are some warning signs of poor adjustment to be mindful of. Coping by avoidance works for some, as it minimizes early distress, but it places the griever at greater risk down the road. I gather that this is how Matthew dealt with his wife’s untimely passing; and now the total loss of his once perfect family seemed exponentially more painful.
I also read that the when the grieving person loses the ability to carry on daily activities, therapy is often needed. This early grieving process becomes critical, as it has been found that those who function poorly after a month of their loss often fail to regain normal function for a year or more….We were coming down to the wire with Matthew.
You also have to be aware of the potential for the bereaved to develop physical ailments, as there immune system is also negatively affected. I pray that some of the anticipatory grief work that we had been doing with Matthew starts to come to fruition, as often the best treatment for the debilitating effects of loss is prevention.
It wasn’t until about eleven o’clock at night until I saw my chance develop as he emerged from the cottage. He quietly sat slumped in the white plastic patio chair by the front door. He was lighting what looked to be a cigarette. I took a deep breath and made my way over slowly…
My opener was lame at best, but it got me through the first terrifying pangs of my own anxiety. “I can’t sleep either Matthew.., mind if I sit?”
He glanced over with glossed eyes and shook his head with affirmation… Everything I wanted to say suddenly oozed out of my brain and dribbled onto my shirt’s collar. We sat in silence while he smoked… It was perfect.
I began to think of what the most helpful thing a friend of mine had done after I received word that my father had died. It was just sitting with me, nothing else… This would be my strategy. I thank God it worked then, and I think it did again tonight…
We must have looked out over the water and star speckled horizon for at least an hour before a word was exchanged… It seemed like an eternity… But it felt ok. Slowly, as my own anxiety abated, his seemed to follow suit.
“You know, Mark, I’ve been asking myself if coming down here has been worth it,” he offered.
“What do you mean?” I posed.
“It’s not about the money, or the services, because everyone has been great… I have appreciated all of it; but getting as close to her as I did the last several months makes right now so much harder… Sometimes I think I could have benefited from some respite by working if I were at home in California for all this.”
I hesitated, “Yeah, but there must have been a reason that you wanted to get here when the shit was hitting the fan…”
“There was…..” he said. He left it at that…
I did not pursue further. I just followed his lead, and looked up at the sky. Without the orange hue of city lights, the night’s sky was sharper here than I guess just about anywhere; between the moon and the clouds there was fodder for any imagination… I quietly was embraced by the knowledge of my previous conversations with Sarah and her take on the view.
It’s been almost four months since coming ashore. I can hardly believe it. Although I’ve been sort of a shape-shifter when it comes to my role here, I have also been able to get a reasonable amount of practical medical training accomplished. I realize how am lucky I am to be be a learner in the presence of the Simon’s, the staff, and these residents alike. I am feeling quite blessed that this unique experience is going to eventually help me to become a better physician someday, somehow.
I think about the limits of my previous “patient experiences”, and consider how much I have yet to learn. Granted that I am only headed into my third year of medical school, I recognize the lack of exposure that most of my classmates and I share. Most of us have primary experiences afforded by some bullshit EMS class we took as undergrads, or in the form of a personal presence during a loved one’s decline as they passed away in some dimly lit hospital room. Some of us have our own medical issues that paved our path into medicine. Now this here, this was something different. Something real. Something poignant. When faced with the end of life, it is amazing how these residents cut right to the point. All bullshit is shed and only what matters is focused on and discussed. I wonder if all medical students should be started in a place like this -to see what we are trying to save, and how it can be when we don’t cure or fix someone.
An infusion company representative was visiting today from San Juan, Puerto Rico. He stayed for dinner and gave a presentation on his new drug delivery device / IV pump. he versed us in the intricacies of subcutaneous infusions for medicine and fluid delivery to patients with difficult intravenous access. As it turns out, a very appropriate topic for a hospice lecture. The only thing I knew about it before today was that I had a cat named Stanley who once needed this set-up when he got really sick. Good old Stan – he was a hell of a mouser, but he certainly didn’t stand a chance against the speed of that mail truck.
There’s nothing quite like a side-dish of salesmanship to compliment a nice steak dinner. This concept of powerpoint by candlelight is a combination that I am sure I won’t soon forget. Tonight’s cuisine was crafted by Jamie, and offered by Natalie Bartolli, one of the residents. The entrée was called Bistecca alla Pizziaola, and with a name like that, it was as good as it sounded. Natalie suggested this classic Italian dish the other morning during the clean-up after breakfast. Since then we all had been anticipating its greatness.
Tonight we were not disappointed. Placed together with a grilled steak, grilled tomatoes, and a load of herbs fresh from the garden, was an amazing fettuccine. If that wasn’t enough, a cappuccino tiramisu was the desert. I think I ate too much. Perhaps if I ran back the sales rep may have some free samples of insulin or a antacid to take. As I am back on my computer now, tucked into my bunk for the night; my blood sugar rises and my sedation peaks. My usual angry stomach rumbles have quelled to the occasional shrills and squeaks of pure intestinal delight.
In preparation for the evening’s meal, I was able to help Jamie in the kitchen by washing and cutting the herbs an vegetables. I also was tasked with puting together the salad course. All of this was done under the careful watch and direction of our culinary consultant for the evening, Natalie. Making my way around the kitchen with Jamie and Natalie, it struck me that given a few cameras and a live studio audience; we could have a pretty kick ass cooking show from this place. Maybe we’d call it “Death by Chocolate,” or some more euphemistic play on words that could represent who we all were in this time and place.
The only way I can describe Natalie Bartolli is by reflecting on my own stereotypes of a third grade school marm; aged beyond her years, and with a certain warmth only granted to those who she is teaching. It wasn’t until I was slicing the tomatoes the “wrong way” that Natalie has spoken directly to me since coming here a month and a half ago. “Lengthwise, not width-wise” was the lesson for the day. Maybe she was right, it did look much better…
Reading through all of the residents medical records upon arrival was now a part of my learning. My chart review and subsequent discussion with the Simon brothers was all I really had to base my personal opinion of her on. On paper, she is described as a sixty eight year old woman diagnosed with, and treated for, metastatic ovarian cancer. Since the time of diagnosis two years ago, she has received multiple chemotherapy regimens and a few courses of palliative radiation therapy to her pelvis, where there is significant tumor burden. Her other past medical history is significant for fibromyalgia, depression, anxiety, and post traumatic stress disorder spurred on by childhood sexual abuse perpetrated by a family member.
As I read through years of this woman’s medical treatments and examinations, I have been introduced to the jaded view that doctors must have of unknown patients when they first come into their office or hospital. Many might have a hard time getting past her fibromyalgia and mood disorders ( as manifested in her affect). I could see her just getting written off as initially crazy, or someone who couldn’t be helped.
Sure all this bad stuff had happened to her in her lifetime, but she had also been an amazing teacher for forty years. Nothing mentioned about all that… I am sure there are hundreds, if not thousands, of people that look back fondly on Ms. Bartolli and her giving presence. Unfortunately there is no ICD diagnosis code for the important stuff.
I was really stoked that everyone loved the meal… As usual, Jamie deferred all compliments to Natalie. Even though anorexia was a symptom that Natalie was plagued with, suffering with recurrent malignant bowel obstructions secondary to the tumors in her belly, she was able to sample a taste of her own creation and agreed heartily. I could see the satisfaction on her face as she watched us all eat what she had created. I am sure there is an immeasurable sense of being, when you can create something in the setting of internal destruction.
Selfishly I hope that given Natalie’s predilection for teaching, I can get to know her better… Part of my intuition leads me to believe that because I am a young man, I may remind her of past atrocities that she had experienced….
On a night like tonight I look to the heavens and thank God for our also human ability to create. In whatever form or product that results, it is a great sense of pride.
Natalie’s meal
Entered weeks later (September 6, 2008)
We toasted before our meal tonight in honor of Natalie Bartolli. She had died peacefully with the staff sitting vigil around her, and ushering her into the next world. We all had become her family. She passed calmly after becoming septic from an infection that we presumed came from a perforated bowel. In the days before her death Natalie had some profound insights that she was quick to share with us.
In her final hours, she was able to detail what she was physically and mentally experiencing. She detailed her thoughts of what was happening in her body. We followed her lead and listened in awe. These descriptions and reflections were not only helpful for us managing her symptoms, but also for her in ascribing meaning to what was occurring within. From what I have learned, it is not uncommon for hospice patients to experience this blessing in their final moments.
This self awareness at the end of life is coined “near death awareness.” It is a phenomena that can manifest in many ways. In Natalie’s case, she was at first very specific and tangible with what was occurring, and then it progressed to more symbolic descriptions.
When she detailed the presence of her grandmother outside the window, I was reminded of a similar “hallucination” my own mother experienced before she died. Natalie also told us of her own visual perspective changing to that of her experiencing the room from a few feet above her own bed. She even joked that it felt similar to the time she “mistakenly” dropped acid as a college student in the 60’s. Moments before she died, she told us all that she was ready to go home. As she reached out her hand, we all knew what she meant.
Natalie’s death was a beautiful experience. As morbid as that sounds, I feel like I am immediately less fearful about what happens next. I can only imagine what would happen culturally if people saw moments like these, and understood there significance. Perhaps we would all be consciously reborn and work to treat death in a way that accepts it as part of life. Rest peacefully Natalie – thank you.
There’s a strange phenomenon that I am becoming acutely aware of lately. It involves the random airing of particular songs that come onto the nearest radio during the most opportune moments. The most poignant, I am sure, have gone unnoticed; though as my awareness is heightening, I am recognizing these synchronistic moments occurring more and more. Either the universe is conspiring to reveal something, or quite possibly I am going bat-shit crazy.
At the bar the other night, I was talking to this gorgeous girl who was vacationing on the island with her friends from Manhattan. They were there celebrating some sort of post collegiate spring break reunion. At the peak of our slurred conversation she told me about her irrational need to always wear her favorite Yankees T-shirt inside-out for home games against Boston.
Just then – Stevie Wonder’s Superstition came on the juke box…. Being a Boston sports fan, and having my own illogical beliefs about what I can do to help the teams win, it was perfect timing. My earlier decision to not wear any underwear (to help the team) was not in vain. We watched the game together and the Sox were up when I headed home later that evening.
This morning, I was talking to Jamie Sullivan about her time on the island. She told me about how her parents used to bring her here as a kid. She reflected on how those early experiences led her to pursuing her escapist fantasy with her now husband Johnny. They first came to St John when they were 21 and just out of college. As she talked, a similarly well timed tune made its way from the ragged looking FM radio propped up on the kitchen counter. Kenny Chesney’s Girl from Boston played across the static of the local radio station. We both sat and listened. According to Jamie, the song could have been written about her…It somehow made perfect sense.
Jamie is a thirty six year old woman, originally from West Roxbury, Massachusetts. Since the inception of the hospice, Jamie has utilized her sociability and love of the culinary arts as the head chef, hostess- extraordinaire, and part owner of the facility.
Jamie and her husband Johnny, certainly never could have envisioned their lives would have unfolded as they did, but Jamie seemed truly content. She had purpose, lived in paradise with her soul mate, and selflessly gave herself to healing the residents’ weary hearts – one fresh baked chocolate chip cookie at a time. Her philosophy was that if you kept the smells coming from kitchen inviting, then people would feel real nice about coming home.
Apparently this was also the way Jamie met Johnny back at Northeastern. She baited him into her dorm’s kitchen by wafting the smell of fresh baked brownies right up to the men’s floor he lived on. Obviously Jamie also was a believer in the adage about getting to a man’s heart through his stomach.
For all intents and purposes, Jamie is the matriarch of this extended family. She loves everyone with a the selflessness of a mother, the fierce advocacy of a sister, and the loyalty of a best friend. Johnny is one lucky guy. As their Love appears to have been created in the heavens, I bear in mind that so too is thunder and lightning.
In the past months, their “lover’s quarrels,” have been picking up in frequency and publicity. Jamie confided in me that that she has been stressed, and feels like she’s been instigating trouble with Johnny. She couldn’t come up with a good reason for why though. We talked for a while about it on the way into town to go shopping for the day’s grocery needs.
It must have been the eggs… Once we started to examine the boxes for an appropriate dozen, Jamie began to think out loud. “This book I’m reading says that I am getting caught up in ‘senescing experiences.’ It says that I am imposing an inner turmoil to help resolve my ambivalence towards becoming a great chef with my own restaurant, versus my hope of being a mother and raising kids. I think that’s why I’m getting so worked up with Johnny; he’s so aloof about it all.”
For maybe the fiftieth time since coming to the hospice, I felt like I had stumbled into a conversation that was way out of my wheelhouse. From what I’ve heard, Jamie had followed her dreams by getting married, and then coming to the island… Now that she was here and settled, and beginning to see that the territory she was in was no longer the same fertile ground for change, she was now engaging in a reappraisal of her situation.
I suppose on some level this was happening to all of us – residents, staff, natives, ex-pats, and tourists alike…
All of us are constantly moving forward through these new cycles of change and personal evolution. We progress onward, exploring new possibilities and finishing up old business in the way of our future. Sometimes it gets hard to keep the momentum of this personal inertia moving when we’re alone. If we are lucky, then we can ally with friends and loved ones to get a push to keep us going ahead…
It felt good to be Jamie’s friend, even if it just meant listening…
When we got back to the villa we unloaded Jamie’s Jeep, and brought the groceries up to the kitchen. This area is Jamie’s sacred space. There is no tolerance for disturbing the peace… To prove it I still wear a now bruising welt on my arm inflicted by Jamie’s sharply whipped spatula. I received the stinging red surprise after instigating a water fight last week while on dish duty. It was awesome. I definitely didn’t win, but it was a glorious post dinner ambush that caught her and Johnny off guard. It was all in good fun, but shit, that girl’s got quite a backhand,– I wonder if she plays tennis.
As we unpacked the gorcieries, Phyllis and Natalie came strolling into the kitchen. The were prepared to sit and inspect our local grocery purchases. There is always someone hovering around the center island here, pulled up at one of the counter stools (“just supervising”), or more often actively helping Jamie out with her culinary duties. The two residents had plans to help Jamie cook dinner tonight…
“Helping with dinner” usually involves the older ladies sitting and talking Jamie through the process. Though Jamie’s an excellent and acclaimed chef in her own right, she also does a beautiful job playing dumb for the ladies amusement. They both have their unique recipes that they share in order to craft a few meals for group dinners.
It is clear how much this simple act of cooperation means to all of them… The passing of stories, traditions, and love across this kitchen counter is absolutely the best appetite stimulant anyone could create. Quite possibly the conversations in the kitchen also the most ideal social outlet for them as well. I suppose there is something universal about this room that brings people together. Though cachectic and anorexic, and often feeling isolated in their own suffering, the residents always have better nights when they get together i to participate in the creation of a meal.
It was in my junior year of college when I first began to meditate; in the eastern sense anyway. I remember that at first, it felt much like the Christian prayers my mother would have me say as a youngster before bed. These meditations too were complete with random forays into mindless rumination about nothing in particular.
Both reflective modalities provided a meandering riverbed for my flowing stream of consciousness. The trick was maintaining on course. It was about that same time that I first began to value the undeniable effects of stress on my body and mind.
Like most of my contemporaries the majority of my time as an undergrad was spent trying to figure myself out. I was just starting the struggle to understand the world around me. Some peaceful deep breathing was probably the healthiest of my coping strategies. The practice continues to help. Often still, like a diver adjusting his depth in the water, when I need to regulate my psychic buoyancy, I sit quietly and alter my breathing in an attempt to balance myself in time and space. One foot in the future, one foot in the past, and body steady in the present.
This morning was one of those times that self regulation was called for…
I walked down the well worn footpath to the sand at the water’s edge, and sat quietly. I’ve found that it’s always easier to collect myself when I am inspired by a natural view. As I settled in, waves of unnamed restlessness and irritation were crashing over and over again in my head. When the frequency and amplitude of these waves increase, I find it harder and harder to get back to the safe harbor of a quiet mind. I tried to synchronize my respiration to the lap of the warm water breaking against the rocks, and rushing over the sand by my feet.
Between internal screams of frustration, I began to regain calm. I noticed the client Tom making his way down to the beachfront. He seems to spend an inordinate amount of time down on the dock. Whether it be reading a book, writing into his journal, or just sitting under the cover of a white canvas umbrella; he’s always reflecting on this water.
Thomas Djarvek is sixty six year old retired army captain, turned landscape architect from Arizona. He found his way to the hospice, after brachytherapy, surgical resection, and a course of chemo, and biologic treatments failed to quell a progressive prostate cancer. The multifaceted attack on his cancer was profoundly successful in making him a frequent flyer at his local oncologist’s office.
Tom had struggled with many things in life, and now the repercussions of past battles were somehow influencing the ones he was facing now. Part of his past medical history involves toxic exposure to Agent Orange during the Vietnam War. Now he was one of the ill-fated tens of thousands to be feeling its devastating effects some forty years later.
“Agent Orange” was the handle given to one of the weed-killing chemicals used by the U.S. forces back in the days of its use. For over ten years, it was haplessly sprayed from planes, helicopters, and spray packs to clear dense Vietnamese jungles. This was in an attempt to remove leaves from the thick foliage that enemy troops hid behind. One of the chemicals in this deadly mist contained dioxin, a particularly nasty carcinogen that has since been related to several types of cancer and other maladies. Tom is of the minority of effected veterans who actually receive the VA benefit for the suffering related to his exposure to war. It was hard for them to deny his individual claim; after all, as a chemist he had been one of the unlucky servicemen enlisted to prepare the devastating cocktail.
Being the intuitively warm and social guy that he is, Tom made his way over to where I sat … “I don’t mean to intrude Mark, but I could see that your aura was off at breakfast this morning; everything alright?”
I hesitated for a second; after all I was rather surprised that he could recognize my inner discontent… “Yeah, I think so; I can’t quite put a finger on what I am feeling. I came down here to sort myself out a bit…try to give it a name or something…”
Tom replied with a modest and knowing grin , “I know how it is man, I do the same thing; couldn’t be a sweeter place to turn your focus inward… Just gotta keep track of your time in the sun, double edged sword for us gringos. That shit will give you cancer you know…” I looked over at him and smiled while holding up the sandy bottle of Coppertone.
“Tom, you’ve been here for over a month now, looking around it may seem like a stupid question, but are you glad you came?”
“Absolutely, my pain was getting terrible at home, and I couldn’t work anymore. It forced me to go to see the doc way too often…I was losing track of myself as ‘Tom the successful and happy landscape architect’, and was beginning to identify myself by my cancer. Everything that I was doing was becoming centered on it. I was tired of the amount of attention my God damned prostate needed; it was beginning to feel like being back with the ex- wife…” We laughed…
He continued, “plus every hospital, clinic, and support group that I went to was filled with guys that all looked like my friends down there at the VFW. I couldn’t help but feel responsible for all that suffering ; nope, way too much…” he hesitated. “I mean fuck, after all, I was the guy that mixed the shit up over there. I had to get rid of triggering those awful thoughts, I’d tried everything else, only thing I could do was get away.”
“How are you doing with it so far?” I asked
“Well, I realized that the triggers are everywhere, in the trees, on the boat, in my mind… I’ve tried to forgive myself for what happened, but this sadness lives on a different level, it always has…It won’t die. It won’t go away… In some ways, I think my mind is convinced that it’s committing suicide whenever I try to forget what happened. Seems like the memory itself has some notion of self preservation… It really is psychic torture.”
“What helps you breathe easier?” I followed…
Tom thought for a minute and replied with a questioning sarcasm, “A fifth of vodka and a big joint…. Well, not anymore… I stopped all that junk twenty some odd years ago after the divorce; but it really worked… until I regained a healthy consciousness anyway.”
I could certainly understand what he was saying; hell it was only three short months ago that I was testing that same hypothesis, retreating from my own despair…
“What about meditation, I see you down here all the time on the dock; can I assume correctly that’s what you’re doing?”
Tom shifted this position in the sand, “Much better for you, and a whole lot easier on the body, never mind the wallet… I started in ’71 after I got back from my second tour. I was living in California at the time and there was a lot of this ‘new age’ mumbo jumbo floating around. I got into transcendental meditation for a while -then some Kundalini yoga. I even found myself at an ashram weekly getting advice from some knock-off guru. As it turns out, none of that stuff ever had the same effect if you were also stoned out of your head while doing it.” He pensively looked into the distance…
“What made you stick with it?” I asked. “I mean after you gave up the junk?” I clarified…
Tom went inward for a minute, and I thought he was getting tired of the questions. When his focus returned, he asked if I wanted to hear a story. I turned my shoulders towards his, smiled, and he spoke…
“Back in the early eighties, I went to India on a bit of a spiritual journey. It had been about a decade since being in Asia, and I thought I’d find the balance and an answer; the proverbial yin to my yang. I found out some truths alright, but none more poignant than the use of being centered… When I was there, I met this real cool cat in Bombay; what’s now called Mumbai… I’ll never forget his mug, or his lesson… He went by Ramesh… He was an unassuming guy who was a professor at some medical school over there… Basically he detailed a story about when he was a boy. The town he lived in had a festival every year to celebrate the Lord Ganesh, one of the Hindu gods revered as, among other things, the Remover of Obstacles, and the Lord of Beginnings… You’ve probably seen pictures of Ganesh – deity with an elephant head… Anyway during this celebration, they would march decorated elephants in procession down the city’s narrow streets, leading them to the town center; to the marketplace plaza where the festival would kick off and eventually come to a close… For years they had so much trouble with the elephants. They couldnt walk them through town. Every ten God-damned feet, the things would stop and grab some item belonging on one of the street vendors’ displays with their curious trunks. A shiny piece of jewelry here, a ripening melon there… Slow and unsteady was the pace. After a few years of this pattern, it became a joke. The fucking elephants never even made it to the plaza; it kinda blew the punch line, you know?”
I was entrenched in the story, and he enthusiastically continued…
“So this one day, a sage comes down from the mountains just before the annual parade… The town elders who were looking for a solution approached him. They tell him of the difficult time they are having with these enormous mammals, and keeping them on track… Sure they could throw a dress and some make-up on ‘em, but they couldn’t make ‘em dance…”
At this point I was trying my hardest not to laugh; but he was so serious about this story…
Tom continued, “The sage thought for a while, and then gazed at a tamarind tree that one of the largest, and most wild, elephants was secured to… He walked right over to the tree, snapped off one of the branches, and handed it to the curious giant… The sage suggested the handlers then do this same thing with all of the elephants…Wouldn’t you know it, when the parade began; those elephants marched swiftly, and with more purpose than ever before… They were tempted by their natural curiosity, though always focused on that damn stick… They made it alright; right to the plaza in record time, and with record turnout…Times were good, and again Ganesh was the hero. They partied and the festival was never better…”
I sat stupefied, and sure that I missed something in his story… As if the look on my face didn’t already beg the question, I blurted it out, “What does all that have to do with mediation Tom….I think I lost you?”
“That’s what I said too Mark.” He encouraged…
“So this whole story, he tells me, is a metaphor relating to meditation… Those wild elephants and their distractions represent our clumsy and large minds, always tempted by the next fleeting thought… The tree branches that they clutch represent what meditation is. A simple tool, always in our reach, that can provide among other things, a ticket to the party. You know a device to re-focus your ever fleeting and wayward mind upon.” He continued, “just gotta make sure that tree branch isn’t a drink, a pill, or some other shit that’s no good for you…”
We both had a solid laugh, and then sat quietly enjoying the air… “Thanks Tom, you’re a good guy, a weird guy – but a good one.” I said.
Without fail, every Sunday morning one of the Simon brothers will row out to the white ball mooring just off the western point of the property. They head out for a day of fishing, cruising, or escapes to nearby beaches aboard their 1981 Chris Craft Catalina. This is a twenty five foot cruising and fishing boat that they had purchased together in Maryland when they graduated from college. They had it shipped down to the island soon after moving here.
Although it doesn’t have an official name stenciled onto the stern, I’ve heard them refer to it as the “Aqueous Humor.” This boat has been their sanctuary, their respite, and their bliss. It has been something they describe as always available to recharge their psychic energies after a taxing week. So long as it wasn’t breaking down.
As I have noticed, Sunday evenings always make way for a remarkable time to chat with them when they stumble up the hill carrying a fresh catch and a fading buzz. On occasion, some of the clients and staff will join their days’ fun; but it seems that most take care to respect the docs’ Sunday space. Andrew says time on the boat is his preferred version of “going to church”, it achieves a similar connection to God, though with far more more wine available.
Today after breakfast, Peter invited me to join him on a morning fishing trip to a location referred to as “The Shelf.” He billed the impending adventure as a “serious wahoo hunt.” How could I resist… It sounded like an opportunity I could get into?
Andrew couldn’t make it out today, as he had plans to accompany a client over to St Thomas for a scheduled intrathecal pain pump placement procedure. Peter needed a strong deckhand – presumably to help with opening the beer bottles and baiting the lines. Fortunately I was totally available and happy to join the crew.
On the way out of my cottage, I grabbed my sandals, my wallet, and my now trusty sunscreen. I filled up my water bottle with a pile of crushed ice, and added a fresh side of a cut lemon left over from breakfast. I figured it would protect against scurvy in case we got lost at sea. I wanted to be prepared. I wanted my next merit badge.
When I met Peter at the shoreline, he had already prepped the vessel, the lines, and the coolers. I knew this was going to be a big trip. With a five day old beard, an unenviable case of bed head, and a torn Hawaiian shirt; this guy looked like a fisherman who I could trust.
On the thirty minute trip to the hallowed fishing ground, Peter told me a bit about himself in terms of his adventures behind them helm. He told me about an epic struggle against the ill tempered and snaggle-toothed monster bluefish on Cape Cod. He described a fatally flawed oar-powered charter of Key West. He even detailed a story that reflected his own heroism during a hurricane in 1991 that was later dubbed “the perfect storm…”
I guess he figured I hadn’t seen the Mark Wahlberg / George Clooney movie. I grew up in Massachusetts, and I could clearly see that this guy wasn’t a Gloucesterman; not even close…
What I do know is that Peter Simon is a medical oncologist by training. He is single, and he appears to be in his early fifties. He and his brother Andrew established Altamount Hospice Inc. as a joint business venture almost seven years ago. They embarked on the project after both had taken sabbatical from their respective medical practices to complete further training in palliative care.
They too had been inspired to appreciate the utility of this discipline after bearing witness to the death of their respected father. He had experienced a torturous struggle with the diagnosis and treatment of a metastatic head and neck cancer.
The unrelieved symptoms and hardship that his illness revealed made Peter and Andrew question their own professional focus. It was some time after Mr. Simon had died that the brothers took a solemn oath to heal themselves, and create opportunities for others healing as well. They had realized the ideal way to spend life’s waning days; comfortable, in paradise, and with dignity intact…And if possible, with a rum drink nearby…
Peter and Andrew had spent their formative years in southern Maryland, as their father had been an instructor at the US Naval Academy. It was there they had known Johnny Sullivan. It was destined that Johnny found himself as their third musketeer, and balance to the brothers’ dynamic. In the years following their adolescence, they all would follow different career and life paths until they fatefully reconnected on the island.
Johnny and his wife Jamie had inherited the property in the 1990’s from his grandparents (before the island was popular among the East coast masses). They initially spent their efforts trying to build and improve it. It was a dream come true for the both of them. The villa that Johnny’s family left them was run down, and no one had lived in the cottages for years. When they first started out down here, they were camping on a withering investment.
Rising costs of labor, supplies, and recession gave the Sullivan’s a very grave look into the future of their island dream. They prepared themselves to sell the property in the late 1990’s as the taxes and electric bills alone were becoming more than formidable with each month that passed.
Things were looking very bleak for the property until serendipity floated ashore aboard the incoming ferry. It carried the physicians, their hope, and a idealistic vision to build Altamount. With the partnership of the Sullivan’s, and an impressive financial backing of their own, the Simon brothers set out to transform a shared dream. In the process they solved their desperate friends situation, and transformed it into into a thriving new business.
The carpenters returned, and work resumed. Before long they had a business plan, a quality product, and enthusiasm to change the world. After some well placed advertisements in reputable stateside magazines (and a talk show appearance that Andrew arranged), clients began to drift ashore. The rest was history. I had heard the story recently but I wasn’t interested in the details of it today. Today was about fishing.
on the way out
Once we were off shore we set the lines and trolling began. Peter reached into the cooler, pulled out two Carib beer bottles and popped them open.
“Here you go Mark, now you’re ready boss…” he chuckled. He turned, grabbed the wheel, and rested his beer aside the now blinking fish finder.
In a moment of relaxed curiosity I turned my back on the bending rods, and climbed up to the bridge. “Peter, listen I really appreciate this opportunity, I’ve been here long enough to know how impressive all this is…”
Peter looked back over his shoulder towards the stern and addressed the wake with a squint- induced smile, “Yeah it’s a hell of a day, lots of fish along this ridge. They float right up to the surface. They’re tempted by those attractive instincts that keep them fed… I just wait for the screaming zip of my line to start, I hit neutral, and then I do what I do best… I catch fish…big ones.”
I thought to myself, ‘wow, what a weirdo this guy is, I was talking about the hospice.’
I said out loud, “Sounds like a plan Doc, let’s get some dinner.” Saying it that way seemed so much easier and appropriate for the situation.
It must have been a solid two hours before I got my call to duty. Using a wire leader with a double hook trap set up and fresh mackerel bait, I landed a bite. “Fish on, Doc,” I yelled.
The throttle clicked and the engine slowed to a hum. The sound of my drag letting loose cut sharply into the salt air. Setting my feet, I gave it hell… It was real ugly, but I certainly hooked the son-of–a-bitch. Peter talked me through the hard parts, and then the glowing yellow fish came into sight.
After what felt like an hour, the fish was reeled in to a distance fifteen yards from the boat. At that moment my line tightened, momentum shifted, and I flailed. Out of the water it jumped, breaking the surface and exposing itself completely to the air for the first time. A real beauty indeed. Just then a sharper jerk directed my rod to the port side, and my line went loose.
I thought the fish must have freed itself with that last effort through the surface. Disappointed, I reeled in while retracing my steps through the lost catch. As the rig approached the side of the boat I was shocked to see that I had actually still had something. The fish was still there…Well, half of it anyway…
For a second I wondered if I was really strong enough to rip a fish in half? As I raised it from the water, Peter looked amused. “Looks like a good mahi… You got the rest on layaway buddy?” He laughed. “I guess the shark out there was hungrier than you today…”
“Story of my life, Peter…” I woefully responded. We reeled in the rest of the line and inspected the remains of the fish. Sure enough, it had been a shark. There in the ripped scales beneath what remained of the dorsal fin was a small serrated tooth. I picked it up and held it to the light. My optimism convinced me that this tooth was the reward for catching two fish at once; rather than not landing either of them. Blind faith and a constant search for a silver lining was also accurate synopses for the ‘story of my life.’
Although the morning hunt didn’t provide dinner for the night, it did provide some good, old fashioned, fun for the day. As we pulled up to the dock, we threw the bow and stern lines to Tom, one of most “healthy” clients at the hospice. Apparently he was playing dock master for the afternoon while reading from a weathered Robert Ludlow spy novel.
“Hi Mark, you look good friend, what’d you catch out there?” He asked while pointing at my widening grin.
“Just some rays Tom.., and somewhere out there, floats the body of a thirty pound headless Wahoo…” I raised my brow to explain my statement, and Tom got the picture…
Peter cut the engines and we unloaded the boat. Now I sit safely in my room, three hours later, and can still feel the undulation of the waves under my feet. Swells of inertia move awkwardly from my feet to my stomach, and eventually spin into my head. I feel like I’m walking on water here. Easily the sensation lulls me to sleep.
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.
the scene
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.
local “taxi service”
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.
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.
Sarah’s stage
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.
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.
not a bad place for a detoxifying morning swim
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.
bougainvillea by the front of the main house
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.
Destination Hospice 