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.
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.
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.
“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.
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.
I am simply telling my own truth as I see it:
here’s what my life as a mother has consisted of – or the closest thing to my experience…TRUTH.
Article on Childhood Psychopathy
“Be Fucked.” – Calamity Jane
I received a package containing all of my daughter’s school papers, notebooks and any other miscellaneous documents that she collected over the years of her incarcerated teenaged life. I have had possession of the box for almost a month now and only opened it the other day because my mother was seeking out a particular photo that she assured me was inside.
I have avoided opening this box and exposing myself to the mess of utter bullshit that it encloses, as I know that there is very little about her persona that is her own; the lies that she cultivates and maintains regarding her real life events and the real family associated with them. It’s been a few years now that I’ve had to digest the fact that my only child is a compulsive liar who seems incapable of telling even simple truths in the most casual of contexts.
I can imagine what it must feel like for the mother of a serial killer or a fucking terrorist who has been identified and detained before the world to see: the inconsolable shame and regret, bewilderment and lack of any ability to relate to the actions of one’s own offspring – much less: be able to account for any of those actions as the mother of the creature in question…I don’t need to imagine what it feels like to go through the later part of one’s life in absolute shock and faltering denial pertaining to the finally produced grown-up version of what was once her child; the child she never understood or related to, the child that boggled her mind and trampled her heart in the long run.
But yeah, my good ol’ mom insisted on sending me to swim with the jellyfish yesterday, and asked me to look for the photo in the box…and…
Was I surprised by the horse-shit chronicles that I found inside?
Does it hurt my very core to its hollows upon being reminded how very fucked up my kid is as a human creature, to be able to put such miserable dishonesty in writing?
Hell yes it does, every time…to read such disillusion in her own words always stings and burns like it was the first time reading it.
Yes, the box is chock-full of lies and delusions in written form; horribly non-believable versions of her life story that paint not only me – but my parents as well – as warped, mutilated and fabricated versions of ourselves to fit the varying purposes such documents were meant to serve. These constructs of penned deceit written by the hand of my only child are not something I take lightly – on any level; as they have come to serve as written proof in my mind that my child has been lost to me and my family for a long, long time already. And, somehow – as crazy and unhealthy as this may come across to my readers, to be reminded of exactly the depths of character incessantly displayed by her at the cost of her own family – the only people who have ever given two real fucks about her – is a comfort to me now; as I have no idea whether she is dead or alive, anyway.