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

 

 

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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