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.
Well, I’ve been trying to find out exactly how to put into words what I’ve been experiencing since my return from seeing my daughter (possibly for the last time ever).
On the day after her eighteenth birthday, she disappeared and left me to swallow the reality that she could truly care less about our extremely strained relationship ever getting better. I spent the next day and a half alone and in tears, until it was time to catch my flight back home. I knew it would only be a matter of time before she burned the bridges (as rickety as they were to begin with) between she and her “girlfriend’s” family and people; before she found herself excluded from whatever setting she had been so compelled to ditch me for.
Of course, I was right. It was one of the most difficult things I’ve ever done to actually leave that place by my own will, seeing as how I truly feel as if I’ve walked slowly away from the arena in which she will be tortured and killed eventually. The years of her teenaged life have been spent with her running away – running away – running away…and now that she’s an “adult”, there’s no chasing her anymore. And, that’s what it all comes down to for me I guess, is the fact that I’ve spent so many years in having to “force” my way into her life, if I wanted to be there at all…which is anything but a good feeling when it comes to one’s only child.
Boo has found her way, once again, to right where she undeniably wants to be: a place where she is regularly treated like an animal by grown men who buy her for a few hours at a time to use as they like, before tossing her aside (if she’s lucky). The lies that she spent our time together in telling me only make my blood boil in retrospect:
“You never have to be on the street, Boo; you know as long as I have a roof over my head, so do you…”
“I’m done with that lifestyle Mom…I know that I deserve better than that…”
Her father was the master of telling me what I wanted to hear in order to get me to fall in line with his bullshit…and the older she gets – the more she makes his ways seem so feeble and small. I haven’t heard from her since that day…May 14th 2015; and now I am once again living in that mindfuq place where I am afraid to answer my phone again. I am back to waiting for that call in which I am told that she has been found dead somewhere in a garbage pile. It hurts. Bad.
A very fitting ending to my week might have been an explosion that swallowed my entire section of gridlock in rush hour – nowhere to escape to – no matter if you use your blinker, or not; another fitting scenario just as easily could’ve been something along the lines of having my limbs tied to four horses that were subsequently giddy-upped four different directions; or I maybe should have ended up asleep in some dirty crackhead’s tunnel inside of that horrid “sculpture” thing that I spent several days of last week staring at from a cush hotel balcony…that would have sucked.
The ten days leading up to yesterday seem like a dreamscape to me now, somehow – in a surreal and foggy kind of way; the entirety of the emotional expenditure on my part has left me drained, and sensing a question mark floating above my head when I try to think too hard about why that is. I have decided to let it roll off my back for now – all of it; it’s too diabolical and dramatic for me to wrap my head around, anyway. All that I know for sure is that I have lost my focus lately, despite my progress in therapy and my expanding comfortable environments (good sign!), it is suddenly clear to me that I have been quite “functionally” dissociated and detached throughout.
It’s the final “other shoe” that needs to be dropped before I can possibly breathe again like I used to. The tension and anxiety that are attached to Boo’s upcoming 18th birthday and release into a distant community, on her own and without any preparation or real world social skills – well…the underlying dread and fear have rendered me bassackwards on pretty much a daily basis for so long now that it has come to feel “normal”, almost acceptable on some days. But in truth, this ongoing stress factor for me has done a good job at riding me hard; and these days, I guess it’s time to try like Hell to put me away soaking wet.
The darkness that my life has gradually resigned to, as a result of the past six years of Living Hell in a Waking Nightmare that is directly attributed to, as well as executed by – the local courts and government funded agencies – remains as a hue that my words cannot possibly describe with any justice or worthy depiction; the needle went off the vinyl so many years ago and there has been only the hideous, brain-aching sound of the resultant scratching ever since. The professionals charged with protecting my child have collectively gang-raped me (metaphorically speaking) in succession for over six years – legally, and without shame. They have broken my pockets through repeatedly relocating my Boo further and further away in distance, and then denying me the agreed upon (prior to any of the relocations, of course) financial assistance with the lodging/traveling expenses required to maintain any kind of real “relationship” with her afterwards. These so-called professionals have been the CRIMINALS more often than not, the in the grand scheme of it all.
Yet – nobody gives a second fuck about it…because it is unbelievable right? It only happens to people on TV or in a different state than ours, right? Sadly, anyone you see in the news with similar stories is only even shown on the news because something irreversibly tragic and impossible to sweep under a carpet somewhere has happened to that person’s child(ren). I would love it if someone – ANYONE – could successfully show me any form of lasting justice in the Juvenile Court System, nationwide. I search and search these days for any documentation that sways an opinion in the direction of such a notion; one thought of Boo, and my blood starts to boil, naturally. Yes – Boo has FINALLY seen a small piece of the justice due after the Living Hell that she has been forced endure for the last SIX PLUS YEARS…but it’s hardly enough.
Notably, these crucial and trying years have been spent being forcibly separated from each other by the very same individuals and agencies that set Boo on top of the burner to begin with all that time ago. Notably, the tragic and disgustingly long line of events that have transpired as direct (and indirect) results of the Judge as well as the local DFCS’ initial fuck-ups through Failure to Protect/Failure to Act/Failure to Follow Procedure continues to be swept aside to all corners by every “professional” involved. Notably, anybody with any empowerment to have helped Boo receive said justice when it still might have meant something to her – as a child victim to a Pedophile on the county Payroll – has opted NOT to exercise such powers in the sake of a child’s fundamental human rights to be unmolested while under the COURT ORDERED “care” of an institution.
Theoretically, last night should have brought me the best sleep that I have had in some time, after hearing a jury’s guilty verdict of the man who ruined my daughter so long ago.
As I lay there in darkness with buds tightly squeezed into each ear playing Ben Bonetti’s “Hello Spider” meditational gig, I began to think about the Pedophile’s family (he has a wife and two children the same age as my own), and was overcome with grief.
Over the last few years, I’ve seen his wife various times in passing- on the news, and other places associated with the common denominator between us; there are ill feelings in the air during each of these instances, almost naturally. I have watched the Pedophile’s aged and decrepit mother hobble up and down three floors with her cane to trial so many times I couldn’t count them if I tried; I have seen the toll taken in the faces of his kids as they have become young adults, just like my own has; I have watched his family disintegrate into dust amidst the chaos of what he has done.
These things do not give me a sense of peace or fairness in any way…two shocked and completely torn children who stopped showing up at trial days altogether about halfway through…the jolly smile gradually fading altogether from his ancient, crippled mother’s face…the last string of hope attached to his poor wife’s perception of his innocence just falling away into nothingness…
the many scenes that would undoubtedly be enacted most dramatically for a movie; the parts in which the viewers would be pumping fists and shouting “Yeah! That’s what they get!”
But reality tells me differently now… “they” don’t deserve this at all. They have been victimized also (especially the kids) and have been also been permanently damaged and traumatized by the actions of their’ Pedophile father. His wife, who stood by her man for years before finally becoming so jaded and embittered by the proverbial “bag” that she was left to hold after her husband was arrested, she has been traumatized as well by the causes and effects of her husband’s Pedophilia; she has truly been changed in many ways by this circumstance – and I am not even someone who knows her, but it’s that apparent, even to a stranger, how heavy her burden weighs in on her back – it shows in her face, her disappointment and shame…and, that isn’t fair – she isn’t the Pedophile. Last night, I found myself wondering about her; about what she was doing in response to this news that has lifted my spirits to new heights yesterday…what thoughts was she spending her night playing out through her tired mind?
Anyway, I am obviously relieved beyond words that he has been convicted of many counts (not just Boo), but the verdict and its permanence holds more facets carved into its surface than I had originally been prepared for, I guess.