Wednesday, February 5, 2014

When the bullet hits the bone

That's just a line from the awesome Golden Earring song, "Twilight Zone,."   It really has no relevance to this post, except that I needed a more genteel way to say, "When the shit hits the fan."

Thoughtful of me, no ??

Nobody wants to be "that guy." (assume gender neutrality was intended, there ......)

"That guy" manifests itself in myriad ways.  In this case, I mean the person who posts/only posts/mostly posts the saddest bits of their life on Facebook.

But ......

I've been bedridden since Christmas Day 2013.  Without going into all the details, we know -- at this point -- that my liver has been asking permission to fail, and proving its willingness TO fail by functioning at a greatly diminished capacity.  The onset was sudden -- a matter of hours.

I'm all jaundiced.  My skin and eyes are yellow.  That's the "bile" that the liver is meant to clear out.  Lemme' tell ya: that bile feels like a million bucks as it oozes and wends its way out of my chemically burned, Not Protected By Fluid-Filled Lenses eyeballs.

As it turns out, though, yellow IS a pretty good color for me.  Does that make me an autumn ??

Stage 1 of something mellifluously called "Hepatic Encephalopathy" involves an inverted sleep-wake cycle.  I am awake ALL night long, and struggle mightily for an hour or three of sleep over the course of the day.

And then there's the "pruritis."  That's itching to you and me.  The same "biliary salts" that exit my eyes exit every pore in my body, causing an unmanageable itch that -- were my liver not in jeopardy -- would surely drive me to drink.

I'm getting good care.  As a guy who's been a patient since about the second trimester in utero ... unfortunately ... I can ramp up on medical stuff as quickly as my wretched little eyes will allow.  I know enough to know that .... at this point .... we need more info.  Can't rule anything out, yet.

Because I have a compromised immune system, it is agreed that hospitalization is inappropriate, unless [any of the following] happen.

In March of last year, I threw the kind of Hail Mary pass that the OLD Peyton Manning could throw (knowing NOTHING about sports, I really hope that worked !), and took off for Central America, on the off chance that ultra-high humidity would offer relief from pain from the chemically burned eyes. 

At the end of a pretty decent three months, the magic wore off, and I returned to the States.

I had no Plan B before Central America.  Perhaps not surprisingly, I have no Plan B now, either.  If I did, though, having a meltdown in a major internal organ ... probably wouldn't have been considered.

Since coming back to the States at the beginning of August, I've been working with a Pain Clinic AND a Palliative Care clinic, trying to manage the neuropathic pain that comes from the chemically burned eye thing, but we never made a dent in it.  It's possible that any/some/all of those meds could be responsible for what's going on now.  Too soon to tell.

If they arrive at the conclusion that it quite likely WAS a medication, then the only definitive way to prove it, and which one (important) is to "re-challenge me:" start me on the drug again, closely monitoring liver function, and push up dosage slowly, over time, praying all along the way that The Shit Doesn't Break.  Again.

But none of that is for today.  Today, we have to get/keep me stable, keep weight on me (think I've lost 15 pounds since Christmas Day), and try to put a name to the face on .... whatever's going on, here.

As many of you know, this all began in 2009, when -- having moved into our new Colorado home -- life fell apart.  Honestly, it didn't "fall apart" as much as it was wrest from me by comparatively normal looking, but absolutely soulless, evil, and sadistic people who lived in the same Colorado community as I did -- people who, literally, did not believe that I am medically disabled.

That City, that County, that Judge have imposed a Gag Order on me, barring me from telling my story publicly until something like September of this year.

... on pain of being prosecuted for a felony that I did not commit.

I'm at the ragged edge of not giving a damn what those people do to me.  I'm at the ragged edge of writing and posting the story, circulating it to media outlets, naming names, including photos, home addresses, e-mail addresses, and phone numbers of the players, documents uncovered through Discovery, etc., etc., etc.

      "Freedom's just another word for ... nothing left to lose."

They truly cannot take anything more from me than they already have.  I'm IN prison, now ... albeit a very plush, ocean-view prison in Southern California (thanks, Mom !!!)

It is directly because of .... That Of Which I Cannot Legally Speak .... that I can no longer wear the lenses that gave me back .... a big chunk of my life.   And it is now anything BUT a certainty that I'll ever be able to wear those lenses again.

Four Southern California corneal specialists (one of whom is trained in fitting those bionic lenses) have told me, since August, that ... no ... you MUST not wear them.  They have told me that I must get BACK to Boston to reprise the 6+ week "fitting process," to see if I CAN wear them again.

But I'm absolutely certain -- having done the six-week trip twice already -- that I'd enjoy Gitmo a hell of a lot more.  That's why we were trying to get control of the pain: to allow me to get to Boston, and survive the process yet again .... but ... this time ... lacking the former confidence (read: carrot) that there would be a big payoff if I did get through it.

Naturally, we had to taper me off of each and every pain med, over the last month.  I'm flying Au Naturel again ;-)  Debilitating Eye pain.  My closest friend and constant companion.  'Tis good to see you again, Old Chum.

I'm not sure why I chose this night .... my wife's birthday .... February 4 .... to spill the beans.

But there they are.  The Beans.

Sadly, because of my eyes, I have had to -- and HAVE -- risen from the ashes (of medical disability) more times, in 50 years, than I care to recount.

But .... today ... the ashes feel pretty good.  Familiar.  Comforting.  Safe.  Maybe I'll just be early for Ash Wednesday this year.....

Stay tuned.

Ciao for now .... from the Idiopathic Liver Injured bowels of .... The Gulag.


  1. Never forget you've got friends, dude. While I'm not one for the "I'll pray for you" route, I can say that I'll put some good vibes out into the universe with your name on 'em. Get better soon... sounds like at this point, there's lots of room for improvement. But then...

  2. Sending you some good vibes right now omshantishantiom ~~~~~~~~~~

  3. I'm so sorry, Neil! I hope you hang in there and take care of yourself. Really, I can kind of relate. I have stage III kidney failure that I just found out (about 4 years ago) and chronic migraine headaches. I had to quit my job in May of 2013. Also, I empathize with you regarding the corrupt Larimer County Justice system. If I were you, I would name names and everything you've got to let the people of Colorado and especially Larimer County, what has happened to you and how evil they are. I named names. I don't care if they come throw me in jail. It is a cause that I am fighting for now. They took you down and they took my dad down just for the fun of it, I guess. I didn't tell you that I live catty-corner to a Larimer County Sherriff and I don't care who knows me, I am going to keep fighting them. We need to make our community aware and we need to vote these people out, i.e. Judge Howard, Justin Smith (Larimer County Sherriff), and the DA. Informing and educating our community is the only way this will happen. Please get your story out. They can't touch you in California. I feel like leaving just like you did, but as long as I am alive, I will fight to get these people out. There are more stories like ours all over the country though; it's not just us. I am wishing the very best and believe me you are in my thoughts, so please keep me posted.

  4. This comment has been removed by the author.

  5. Nuts. More like what Burt said. You know what I said, but...priorities. I just don't want you to waste energy on negative things and people.

    Praying for science, or whatever the equivalent is. Keep your humour in all the right places. Love and peace.