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.

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

Digestion.

At this very moment in time I am so overcome with love for Boo. There’s not a particular reason why besides that she’s my daughter. And despite it all, she’s so brave and so strong. Even if she has a complete lack of her own self-worth…she is beautiful.
My best friend Sam (more of a guardian angel the gods have blessed me with for whatever reason, I don’t ask questions) helped me to understand a key element of this nightmare situation a few weeks back…and yes its only barely setting in now.
She said,

“Babe, the Boo you are waiting for is not going to come back. She’s gone.”

Admittedly, this was NOT an easy conversation for me to digest; and luckily I have a best friend who understands my slow computation process; part of her likely expected me to explode at such a statement. But between me and my best friend, anything can be said without such lingering negative affect – and so the story goes. After my conversation with my best friend, I went through some different things: types of mourning, grief, and acceptance of a loss so deep that it cannot be treated or cured.
During all those trials and emotional roller-coasters, things continued to play out with the current situation surrounding Boo and her status, reinforcing the fears and sadness and loss. And then, something happened. The last time Boo was found unconscious and unresponsive – right before they gave her the first tracheotomy – my perspective and/or perception had shifted somehow.
Now, anytime I spend with Boo is different, but not in a bad way. I do somehow see her as a different girl from my own, yet, she is still my daughter. And, all I can do is try my best to be a good mother to the Boo before me today. She will not be the things I have been hoping to see her become…now at least, maybe never. But should the Boo I have today survive through this, there’s hope for a relationship with her, instead. Which is good enough for me.

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

The Slow Drink.

One element of the strained relationship that I have never written about before on this blog is that which makes up the dynamic between myself and my parents (my mother and step-father) and Boo; the reasons behind this were self-serving, as the depth of detail that would be involved in trying to write down this dynamic is daunting to consider. In order to write about the current status of things now, however, I must do a summary of that dynamic first:
• Upon my return from a long-time in-patient stay at the hospital, she had changed (this much, I HAVE written about in the past on this blog) – changed in the sense of her overall characteristics, personality and functioning behaviors – she had become “spoiled” in the classic sense as a result of residing with her doting grandparents for too long without any real ground rules.
• It didn’t surprise me as much as it hurt me to quickly learn that when given a choice in the matter, Boo would unfailingly and repeatedly choose to be with her grandparents (instead of me) – as she could control the situation to a disturbing degree when she was with them, as opposed to when she was with me.
• A wedge was built between all of us.
• Boo’s “splitting” set the stage for the years to come.

By the time I had come to terms with Boo’s preference of my parents over me, it was because I was unable to uphold the rules and culture of my home when she was at home; her disregard and disrespect for my expectations as well as my consistency when it came to cause and effect, and any attached repercussions that she might have at a given time. She never had consequences with my parents: they let her run all over them and always found reasons to excuse her behaviors – to the point of sheer enablement. It had become so bad that even prior to Boo’s being put into a “residential treatment facility”, our family was at constant odds in regard to what to do with her. They always accused me of being too hard on her; and I still stand firm that they were detrimentally lenient with an unruly child.
I hate to say this, but everything that has become…everything that our so-called family has disintegrated away to…I had flashes of it years ago; I saw it coming – or at least the very clearly represented possibility of such an un-solvable puzzle as that in which we now reside. As time wore on, Boo began to steal from them; by the time she was eight years old, she had already broken into my step-dad’s safe and stolen close to $1,000.00 over the gradual period of about a year or so. When I learned of this, I exploded and went into a rage, admittedly; I was disgusted and ashamed of Boo for such despicable things. It was within the following few months that she was remanded to the place where she became a child victim of sexual assault – and things obviously tail-spun from there to a much deeper and darker type of despair for our family. However, my explosive reaction to Boo stealing from my parents had started another period of time in which I was once again: cast out and collectively shunned by my mother’s closest family. Things were in such a state when Boo went away, and I did not start to speak to my parents again until several years later – when Boo was almost killed for the first time by a grown man while she was on the lam. None of us had seen nor heard from her in over a month and our fear drew us together at the hospital.
Since then, we have been pretty solid…
I believe the healing that seems to have been happening within my relationships with my parents (together and individually) is due to Boo’s worsening behaviors and lessening concern with how those behaviors affect the people who love her i.e. my parents and I. These days, it’s during the times when Boo has showed her ass and stabbed one or both of them in the back with painful blatancy somehow, that they tend to want me around for comfort. I am happy to be around them for this purpose and always have been, so in turn, is created a circumstance to which I am only bound by the negative and destructive displays put forth by my daughter. Upon my return from the last visit I had with Boo on her 18th birthday in May, I have only been re-affirmed through her own actions of her complete inability to live an honest life, in pretty much any context. She has since that visit, been kidnapped, tortured and maimed, literally nearly killed, had surgery, been hospitalized, and eventually returned to my her home county as a judicially procedural result; she has come back to her hometown – where I live.
She did not come back with any changed sense of appreciation for Life or how close she was to losing hers, unfortunately, either. No, Boo was flown back by her trusty and ever-disappointing “case worker” with nowhere to go besides yet another joke of a Sober Living Environment Safe house that only allowed her in because of some professional future perk the county offered in desperate return for an open bed. Boo lasted all of two whole days there (never calling or apprising any of us to the developing situation surrounding her living status or whereabouts – because she doesn’t have to now that she is an adult). As soon as she finished her course of antibiotic and needed no further assistance to shower etc. due to her numerous and severe recovering flesh wounds that are dispersed quite evenly from her head to toe – she was gone again.
She showed up at my parents apparently; and next, somehow managed to talk my dad into buying her a fucking top of the line i-phone and adding her to his phone plan (he still uses an ancient flip-phone w/out a camera); she promised all kinds of shit and then took a shower, ransacked my mother’s bedroom and jewelry, put on some hooker shoes, and left once again.
• She stole heirloom jewelry from my mother
• She came to the house with ONLY the plan of exploiting my dad’s fondness of her
• She has not returned since
She has, however, had the fucking audacity to call and ask for more cash!!! Not only from my dad, but also me and my mother also!!! My mom has finally been forced to water and I’m helping her to drink as slowly as possible, because it hurts like Hell to be stabbed in the back by a grown child of your own line that you helped raise up, I know…I know. But my dad…well, he would likely GIVE HER MORE CASH if he had the opportunity to do it without me and my mom finding out, I just know it deep down…and I don’t like it.

HATE.

“You get justice in the next world; in this one you have the law.”
~ William Gaddis

I’m not angry at her; it’s hardly her fault at all – what she has become. I am angry at myself, at her monster of a sperm donor, and at the failed juvenile courts system of the United States of America. I am angry at the useless social workers who weren’t paying any attention to what I told them when I reached out for help with her so long ago; I am angry at the many handfuls of children’s services that miserably disappointed her needs back then; I am angry at the laughable façade called the JUSTICE that remains only through legend and lore.
I am angry at the judge who has sat back for over six years now and watched with a wretched smile as my only child has been spiritually battered to death under her “care”; I am angry at the court-appointed legal representative that gets paid to protect my daughter’s rights as a clueless child in the midst of a heinously constructed legal process; I am angry that my community doesn’t give a shit about my daughter’s demise; I am angry at the various grown men (at least one of them, an employee of above mentioned failed court system) who saw it fitting to have sex with my underage child, beginning when she was only eleven years old.
I am angry at the case worker who claims to love my daughter and truly care for her…she is undoubtedly the BIGGEST piece of shit breathing air at present – the one who could and should have stopped many things many times, but didn’t. I HATE HER. And, I hate nobody else in the Universe.