Line in the Dirt.

To shelter you in true security,
to laugh with you at funny things,
to cover you when you fall asleep,
to comfort you when you’re in need,
encourage you to do the right thing,
push you ahead when you’re faltering,
keep you tucked away in secrecy,
wrap you inside warmth for eternity,
to take you places that you like to be,
show you a world free from captivity,
to emphasize your own worth individually,
to make you understand all of this, finally,
to demonstrate the big picture clearly,
to express with a most thorough accuracy,
hold you close to the broken heart in me,
until the day that the thing refuses to beat,
to let you know of the alternate way it could be,
in the place where you have abandoned me,
to sit you down and show you the hard reality,
the line drawn in the dirt that will kill us both, eventually.

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.

Open-Ended Places.

I dreamed again last night
of your younger life
of visions I saw
when things were alright
when the future ahead
was laid out, bathed in light
and the time hadn’t yet come
to hold my own defeat tight
I dreamed of open ended places
where anything stood possible
in its own living right
I dreamed again of nothing
but bathing you in sunlight
and opening the doors
that you’ve kept closed in life
I dreamed again of motherhood
in a victorious bond held high
I dreamed of never knowing you
as you’ve come to slice my pride
I dreamed again of rescuing you
from the darkness where you reside
and redressing wounds, unhealed
wiping blood from those beautiful eyes
I dreamed again of your newborn face
and all the promise inside if your smile
I awoke on fire and screaming aloud
a visit from my long-lost child.

Now.

I’ve been going to bed earlier and waking up later…I have somehow allowed myself to detach again…I couldn’t tell you how such a thing is even possible, considering everything that has happened and likely continues to happen in the world from which I have detached…but I have, and it is.
My feelings are not hurting now, not in the slightest; my senses are as far from sharpened or honed as is humanly possible; my thoughts are grey and soggy; my heartbeat exists quietly in the background noise of everything; my memories seemingly evaporating with slow certainty.
But I’ve been here before, it’s not some recovery set out at the edge of the woods; it’s not the end or the beginning of anything else; it’s just how I get through the unbelievable, it’s how I bear the unbearable, and it’s the only thing I know how to embrace without fear anymore.

The Struggle.

All that is happening now does, indeed, go back to the incident in Arizona. The surgeries that she has already undergone and recovered from have each been in attempt to separate scar tissue that has grown around Boo’s trachea from being cinched by a belt for nearly two days; also – her inability to speak has finally been de-mystified as well. The same thing is happening at the base of her vocal chords, as a result of scar tissue build-up, only the vocal cords have been permanently affected by residues left from the chemicals that Boo had been forced to drink during her captivity. The doctors have done what they can without sending her to a specialist for what is considered as “delicate surgery”; the next step to come.
Within the month, she will be going to Stanford for such things…and I have little doubt behind her strength or ability to deal with it. She remains in care still – a milestone in and of itself; she is bored beyond description, covered in bed sores, and must be feeling pretty low…yet, she hasn’t left again. Her little boyfriend (the one who do not necessarily like so much but cannot deny his humanity in comparison to the other men she has surrounded herself with in the past) comes to visit her now; I know that makes her feel like the world isn’t ending, after all. Anything that helps her to stay put and ride out the road ahead through her physical recovery – I am on board with it.
She has grown up so much…in such a short time…she is so jaded and darkened by her own experiences, that I watch her struggle with simply being cared for by another human being…it’s rough. But she’s letting it happen – as hard as it may be on her.

20150904_140004-1

Re-inflated.

Apparently, she thought that walking downstairs and meeting “a friend” at the hospital was safe enough.
All I know is that within the hour of her leaving the hospital, her trach cap had been taken away from her and she was unable to speak and barely able to breathe. She spent almost 36 hours away from medical care with a brand new, unsettled tracheotomy that needed attention.
She has returned now; out of sheer necessity of course…and she has further complicated her own condition by allowing the trach to become clogged and dirty. Now they will need to replace the original trach with a new one – another surgery, another gamble with her life.

Deflation.

“Hope is a good breakfast but a bad supper.”
~ W. Rawley

When you have a daughter like mine, this is the element that destroys you:
The incurable death wish that transcends even a hole in her own throat; Boo left the hospital last night at some point with an unknown couple and has not returned.
Granted, it is her M.O. to disappear from a recovery unit in the hospital, she has always done that. But never before has she had something as serious as a tracheotomy to worry about. She was notably struggling to breathe in the hospital – what is she going through out there? I don’t understand…I don’t believe it…but I am forced to accept the fact that she intended it. She apparently walked out by her own free will once again. She likes to think that she knows everything and has it all under control, somehow…and…well, we have all seen how well she keeps things under control…
So once again, as of the instant I woke up this morning:
My heart has disappeared to an unknown location outside of my body but still pumps and beats painfully.

inked us 2015