Chance.

I’ve written in the past of my professionally given label of “a medical anomaly” when it comes to my physiology/immunology/genetics. This handle was given to me via a Stanford University medical conference luncheon, in which one of my former doctors highlighted my case in his widely received presentation on ‘reconstructive maxiofacial tissue surgery and uncommon obstacles’. Since that moment in time, most, if not all, of my loosely interwoven healthcare team have adopted the name for my reference. In fact, the nickname seems to be a kind of industry-driven joke from which all humor is lost on me, completely…but what the fuck do I know?
But, I digress.
One of the elements rendering me as such is something known as “Raynaud’s Phenomenon” – a multitude of micro-vascular spasms occurring simultaneously in the digits (and the nose for some people, as well –though I am not one of those thank the Gods…) affecting gangrene and, oftentimes, the loss of one or more dead fingers or toes. You’ll note the word “phenomenon” in the title of the ailment that I foster; this is because there are TWO forms of this thing: one, the most common type, being called “Raynaud’s Disease”, is a chronic and life-altering disease that appears in exceptionally cold environments and/or in the users of regular operation of machinery such as… let’s say – a jackhammer, or the likes. Some doctors even say that this condition is exacerbated by “stress” (in which case, I’m fucked!!!).
I am a beach bum in California with no prior jackhammer experience; so when I was first (and finally, after many initial months of painfully spreading gangrene in all ten of my shriveled toes) diagnosed in 2003, I was defined as having the more difficult type of the ailment known as a “phenomenon”, based solely on the elusive cause and randomly occurring symptoms. The archaic doctor who was on call at the ER where I was FINALLY properly diagnosed and treated called every physician and support staff into the pocket room where I sat with bare feet on an exam table and said to the group of about twenty young med-school graduates,
“This is something you may never see again, so I want to make sure to share this…this Raynaud’s phenomenon; do you all see the skin blanching that happens when the tissue is prompted?”
He pinched and prodded my raisin-esque toes to reveal an odd renewal of color immediately beneath my skin there: they began to oddly shift from black – to dark blue – to a deep, angry red – to a yellowing, white-ish color wherever they were pressed.
“Oooooh ahhhhh.” the young students all cooed.
Very riveting; just give me some pills so my toes don’t fall off, please. Anyway, thankfully the old quack knew his shit and I was finally given the gift of balance and mobility back – not to mention, I was able to keep every toe in its original form.
I have been stricken three times by this “phenomenon” thus far in life; the second time was upon my landing at the Oahu International Airport on the most recent real vacation I took in 2005. The key is in Angina treatment, typically a vasodilator to thin the blood and break up the tiny spasms so far away from my heart. I am currently to the point not being to balance myself or walk normally due to loss of feeling in my feet, especially the right one. My toes have already shriveled quite totally and are shedding entire layers of epidermis as a snake sheds scales – fully intact toe-sized chunks that are being held to my feet with bandages and lots of salve. Warmth only creates a swelling that becomes so uncomfortably shiny and plump that heat offers no help at this point, either. I finally sucked it up and went back to get a script for some good ol’ Nifedipin.

…And, while I shuffled myself down an endless corridor to the pharmacy hidden in a basement of the hospital in the middle of the night – last night – guess who I spied in a bed, unconscious from an attempted suicide by means of drug overdose?
You called it; there was the one and only Boo, my only child.

Today.

Today I helped my somewhat coherent daughter take her first “shower” in ten days; it was the first time I have seen firsthand – the residual extent of her wounds from being kidnapped and tortured in Arizona…it was horrendous for me; but it was like heaven for her to feel clean.
I shampooed and conditioned her now shorn off hair; I found a deep and permanent divot left in the back of her skull from a hammer blow: a half-dollar sized strawberry colored sphere smack dead in the center of the back of her head. My throat tightened up so badly I began to wonder if I might start to hyperventilate.
All over her shoulders, arms, belly, chest and back are huge burn scars as long as the sword that was used to leave them; her arm has been pinned in three places, she’s been given a tracheotomy as a result of 1) Being forced to drink caustic chemicals; and 2) Having a belt cinched tightly round her neck for almost two days.
At one point, I looked down at the floor and asked what the mess what all about; don’t they have a janitor who comes and sweeps the floors? She said yes there is a janitor, and he never cuts corners on her room – she raised her feet both up in the air across from me and I saw the bottoms of her feet for the first time…I had not been made aware of what they had done to the bottoms of both her feet…my heart just hurt so bad. Her feet were burned the worst of all…they burned the bottoms of her feet into mush. What I was seeing on the floor was simply from her feet shedding skin layers endlessly. I just didn’t even know what to say to that…I didn’t say anything; just rubbed lotion on them for her.
She was laughing, smiling; still somehow trying to glow from underneath the mess on the surface…today was a very emotional day…but she’s coming around we hope.

Hum In The Air.

Traveling swiftly,
along in between,
the shuffling feet,
dropping and lifting,
to static frequencies,
over the threshold,
off of the streets,
into the bustling,
and humming,
of a million machines,
fostering,
the very needs,
of broken human beings…
over the sounds,
of the technology,
tubes and dressings,
Hallmark blessings,
I hear her breathing,
ever-steadily,
in the darkness,
over the chorus,
of the ticks, clacks,
hisses and beeps,
she breathes her way,
through the night,
thankfully,
to see another day,
that she’d preferably,
rather not even see,
which is sadly telling,
told by the many injuries,
outside and within,
the broken bones and skin,
all of the gods damned,
technologies and,
cures known to man,
won’t change anything,
the hand,
she’s been given,
the Hell,
that she must live in…
this was once my baby,
and she will,
always be,
worth so much more,
than what she perceives,
as reality,
no hope anymore,
of something in store,
hidden from the sight of me,
I hold my breath in,
unintentionally,
if I fail to register,
rhythmic machines,
over it all,
the patients in the halls,
the button to call…
the sound I faintly hear,
here and there,
along a stream-flow,
of the hospital air,
it’s dull and low,
but a sound I know,
all too well,
it’s the rewound,
haunting sound,
high-pitched,
helium,
voice to the face,
of my baby,
saying things like,
“Mommy please help me.”

“Every rule has an exception. Especially this one.”

Anomalous”, an “exception”, a “phenomenon”; these are all things I have been called in the medical community throughout my recovery from a near-fatal attack over ten years ago.

The “anomaly” came into play during the initial sweep of MRSA that ran through the ICU and burn units, claiming the lives of two patients and yanking many others into the circling of the proverbial drain for months afterwards; I was, once again, somehow spared death at that time as well, despite the many open wounds that left me like a sitting duck for the infectious riptide. Immediately following exposure to the initial strain of MRSA, twelve out of nineteen of the patients there, in my particular unit, broke out with the Shingles (a strain of it that is STILL with at least two of them, to date). Again, I was “unscathed”. It’s important to keep in mind while reading this, that I was unconscious for the better part of 3 ½ weeks straight upon arriving and being rushed into emergency maxiofacial/vasculature surgery – it’s not as if I even had a clue as to what was happening afterwards, in the unit. I wasn’t putting up any conscious fight against anything…that entire period is dark for me, and I carry no recollection of it now. Either way, it was then that I received the medical file label of “immuno-anomalous”; a label that has stuck with me ever since that time – only to be elaborated upon by other surgeons, doctors and various medical professionals in the days to come.

Next was something wonderful: ‘Raynaud’s Phenomenon’.

This is a very strange condition in which cold temperatures or strong emotions cause microvascular spasms in the fingers, nose, and/or toes. Doctors rarely see this condition – it has a very, very rare (identified, at least) occurrence in the world; thus, is difficult to get properly diagnosed, much less treated. I nearly lost all ten of my toes on two separate occasions due to Raynaud’s;

  • Once, before getting it diagnosed accurately, when a doctor came through on his rounds and basically told me that my toes were so gangrenous that they would need to be amputated;
  • Again, before getting it properly diagnosed, another doctor came through on his rounds and said that they wouldn’t need to amputate, because my toes were shriveled into raisins anyway, and would soon “come off on their own” (that was on my birthday, by the way). Happy fucking birthday – you’re toeless!

Either way, I managed to keep my toes – all of them – to the absolute shock and surprise of all of us…I’M still not even sure how that happened without medical interaction – my toes DID literally look raisins for about a week. But – “phenomenally, they bounced themselves back to bloodflow…”, according to the treating physician at the time. And so, was born: “the Phenomenon”.

Lastly, but most sticky, has been “the Exception to Every Rule of Medicine”; a quote, verbatim, about me from a seminary speech made at Stanford Hospital during a retirement celebration thrown for my original reconstructive surgeon – one amazing individual – when he was asked if I was the reason behind his “early retirement”. So many other people from the Medical community were there to hear an esteemed and well-respected old-timer say such a thing, that I will likely NEVER live it down.