Sunday, December 31, 2017

REFLECTIONS on 2017: A Record Year

New Year's Eve, 2017.  
Looking back on this past year....

December 31, 2016:  
One year ago today, my brother, Wm. Jeffrey Welton, was languishing in the Oklahoma Forensic Center in Vinita, Oklahoma, after DLMCJC Tulsa County Jail had kept him in solitary confinement for 111 days until November 14, 2016 when the court transferred him to OFC, deeming him incompetent to stand trial for his "crime."

For context, the arresting incident on July 26, 2016 was fully due to a delusional state of mind, caused by a lifetime of trauma, misdiagnosis, abuse, and 20/20 hindsight we know familial nutritional deficiencies, the adverse effects of sugar, no consistency of care in the mental health "system", forcing of every neuroleptic/anti-psychotic RX Big Pharma has to offer... 
and now we know, medical malpractice.
 
In 2017, we've been purchasing 
Jeff's official medical records. 
We were approached by someone 
in the entertainment industry to do a documentary on Jeff's life.  
So, in order to create a timeline, 
we need actual records. 


The accumulated hospital list alone, is daunting; about fifty facilities, some of them Jeff has been forced into numerous times.  That doesn't count all the times he has been jailed.  Then there's the drug list.  It is mind-blowing.  Pages and pages of neuroleptic brain chemicals, dosages, dates, doctors, facilities...  Our mother has done amazing due-diligence all these years.  She's a masterful record keeper, and documentarian.  So, the story had legs even without the newly gathered, thousands and thousands of pages of medical/psych records on Jeff.  But now, we have new, full records, bought, paid for, stamped, official, and are still gathering more.

They aren't easy to get.  Back in February 2017 we were requesting records from all five of Jeff's Vinita stints since 1989, and we were at first, ignored.  The records department did not respond to our requests, even though we have the legal right to speak on behalf of Jeff to all caregivers.  Jeff has always signed the Designated Treatment Advocate form, an Oklahoma Statute under 43A O.S. § 1-109.1.  ( http://www.oscn.net/applications/oscn/DeliverDocument.asp?CiteID=436655 )
Mom ended up having to type a release for Jeff to sign, mail it to him to turn in. Still, his case manager at Vinita did not comply.  

Next, we pursued getting his decades of records from Carl Albert Community Mental Health Center in our hometown of McAlester.  Mom again typed a FULL release for records, mailed it to Jeff at OFC.  Jeff signed and returned it (and we have all these digitally saved) and in the spring 2017, Mom was informed by CACMHC to come pick them up.  Yes!
  (Or so we thought...)  
What happened was, [Name withheld] gave mom 62 pages, which consisted of only "Admit and Discharge" for the countless times Jeff has been held at CACMHC.  SIXTY TWO PAGES.  It was quite disappointing, because it was nowhere near what we expected to get, and even with their legal right to destroy records older than seven years, 62 pages was NOT his full and complete records.  He'd been a patient at CACMHC many times in the past seven years (on top of the past three decades the rest of which they had the right to destroy), and if you've ever seen medical records, it includes daily doctor notes, all meds, a bunch of stuff I don't yet understand...pages upon pages.  But we were powerless to do anything...

While mom was chasing this dog, I was on the nonstop lawyer hunt. A friend reached out and reconnected me with an Oklahoma Judge that I was in the Pride of Oklahoma band with in 1982. This Judge gave me a handful of attorney suggestions and I called each of them. One of these was Robin Wilson Moore. When I googled and got her contact information, I emailed her and she called me back the next day.  A very kind lady.  She didn't know anything about our story, so during the call, when she realized Jeff's life has been adversley affected by the forced-drugging at every state facility in Oklahoma, she stopped me from saying anything further, because she's the Senior Attorney at the Oklahoma Department of Mental Health and Substance Abuse Services, and the facilities I was complaining about are her clients.  WOW!  Oops...  
(Yeah, I know...I was literally ignorant, 
but 2017 has advanced my learning curve, exponentially.)  

I had already told Attorney Moore how impossible it was to get Jeff's records, even when Jeff signs a release.  Jeff's basic rights were (big surprise) being violated, and the family's attempt at helping him thwarted, due to an arrogant system of facility administrators that think they don't have to adhere to legal statutes and Jeff's own signature to GET HIS RECORDS.  We always wondered - what are they afraid of?  What's the problem with getting the records?  We are willing to pay the (exorbitant) fee for printing, etc...why are we consistently ignored?  Anyway, Attorney Moore cannot help Jeff's legal case (which is the original reason I was calling her), but because she has a good heart, what she DID do was the legal and right thing; She said her office could help us get Jeff's records. Since then, we've been able to email Attorney Moore's administrative assistant to order them each time.  She facilitates the invoice and tells us when they're ready, which has been very helpful.  My only problem with this is, what about all the other families that want/need to get official records for their loved ones in psych facilities?  This was an impossible process, and we had to get special "favors" by important people to make it happen.  It's WAY TOO HARD for Jeff (an indigent, mentally disabled person), and for the family trying to help him.  What do other families do?  My guess is, they give up.  Another reason the state of Oklahoma is overrun with jails and prisons more than half full of citizens with a mental illness diagnosis.  The system is not conducive to families helping their loved ones, even when they have the will to.  It's ridiculously difficult.  Fixing some of these issues will help ease the overburdened system, imho.  

In addition, something very interesting happened.  We asked Attorney Moore's office to 
RE-REQUEST all records from CACMHC in McAlester (again).  Less than one month later, the very same person [name withheld] that gave mom only 62 pages, suddenly produced 368 pages!

 *****Jeff's "full request" was not honored ***** 
 ***** until the ODMHSAS attorney's office put the same request in. *****  

Something's terribly wrong with this picture...and sadly, it's a systemic problem.
And yet another reason we need systemic change.
"Oh!  What a tangled web we weave, 
when first we practice to deceive."  
Sir Walter Scott

So, fast forward month after month, records request after records request, batch by batch, hospital by hospital, building the timeline with Jeff's official records, a revelation occured.  Within those many thousands of pages, we uncovered some bombshells.  Several facilities list a diagnosis code for Acute Intermittent Porphyria (AIP), which is an enzyme disorder that can mimic psychosis, but which administering anti-psychotic drugs is not ony contra-indicated, it can cause psychosis.  We've had lab tests showing Jeff's corprophorins are out of range, ( http://www.hmdb.ca/metabolites/HMDB00643 ) and mother has filed these records into the court ad nauseum all these years, as well as telling ALL Jeff's caregivers, but NO ONE HAS LISTENED.

My brother has been MedMal'd for decades, 
and while those that profess to "First, do no harm" have done just that.  
They have harmed and damaged my brother, 
and HE gets punished for it. 
https://en.wikipedia.org/wiki/Primum_non_nocere

So, yes.  This is a time for reflection...  
We reflect on our Jeff's life continuing to decline, due to those in "charge" of him, not listening.  Still.
We reflect on another long, hard year, of overcoming those that think they know better, of violating Jeff's rights by ignoring the family, which has always been the case.  The family's diligence has been intelligent...a constant search for answers when Jeff was getting worse, not better, in the "system."

We basically have to put these injurous incidents in "compartments" to be able to move forward, because there are too many egregious, repeated, occasions to be stuck dwelling on.  We have a suffering human needing rescue.  We can't spend time wallowing in every one of those "compartments".  We must keep the bad items compartmentalized, so we can continue dealing with the daily hardship of Jeff being delusional and in extreme physical pain...not getting good nutrition to the point of extreme constipation and nonstop nausea. These are both symptoms of (AIP) Porphyria, btw.  And yes, his current "caregivers" at the DLMCJC Tulsa County Jail mental pods were given the (AIP) Porphyria records on November 15, 2017.  This is the illness they need to be treating, but again, it is being ignored.  Jeff puts in requests several times each week on the kiosk, for Porphyria and Diabetes treatment, and he is ignored.  We call the medical unit (again, we are Jeff's legal Designated Treatment Advocates under the OKLA statute) but they never call back.  As always, we are ignored.  And as always, Jeff suffers due to no one listening to the FACTS. We speak to Jeff, daily.  We know how he's doing every single day.  We do not tarry. 

For some positive reflections on this year:
Some folks for the first time, stepped up, finally understanding, really trying to help. Folks in a position to start turning this battle ship around.  It has felt like a war for so many years...this feels like a miracle.  But yes, a glimmer of HOPE is in sight.  Hope, not only for JEFF, but for so many others like him, for Oklahoma, and - in my big-picture, long-term thinker mind, the entire country.

I've always believed the life Jeff has lived
 - which he does not deserve - 
would one day have great meaning. 
My instincts are telling me it has begun.  
Now, to keep pushing the envelope forward.

2017 also had some AMAZING new developments, some of which I cannot speak of, just yet.  
But this family lives in a massive state of gratitude for the new additions to "Team Jeff" 
that we didn't have one year ago.  
World changers, that have the "resumes" and credentials 
to get those that ignore the family and Jeff's records to finally, take notice.  
It seems, in Oklahoma, it takes someone "important" 
in our corner, to make ANYTHING happen.
This year, we've been getting those connections... 
...God has literally thrown them in our lap.  
Just as the timeline of Jeff's life story tells hard truths, all this will set things in a new direction, away from arrogance, to finally respecting when a mother that literally gives everything she has, every single day of her life, to SAVE HER SON, is no longer ignored.  
People will open their eyes to a new understanding, to new empathy, like never before. 
And so we move into 2018 with the energy to continue fighting on.

Jeff is currently still suffering under the punitive system he's been forced into, 
but he's still alive.  
And as long as he can do it, WE certainly can.

CHEERS to 2018!
May times long past, be put behind,
and may we all have better days ahead.

Should auld aquaintence be forgot, and never brought to mind?
Should auld acquaintance be forgot, and days of auld lang syne.
For auld lang syne, my dear, for auld lang syne.
We'll take a cup of kindness yet, for auld lang syne. 











#ForJeffAndAllTheJeffsOutThere
Jackie Welton DiPillo
#NeedNewKindOfHospital  #Need2CARE


Saturday, December 23, 2017

'Tis the Night Before Christmas

'Tis the night before Christmas when all through the land
Families are stirring. Gathering clans.
Kindling relations, some travelling afar,
By airplane, through weather, or long trips in the car.

Parents look forward to seeing bright eyes
Awaken the morrow to Santa's surprise.
Opening gifts of red, green and gold,
Sharing traditions, young loved ones and old.




One person can't be there though well missed, he is.
It's a troubling story; his life is not his.
He's a brother, an uncle, a long-suffering son,
Who sits in a mental-wing jail cell, alone.

A small barren room with steel toilet and sink,
His thoughts his companion; his fears on the brink.
Through thick plexi-window he can see others roam
In a room not allowed him, his status too low.

The "well-behaved" have freedom beyond three inch glass
Denied to this person as he watches them pass.
Deemed "better" than him, TV programs they view
An example of incentive rewards by review.

No...no simple pleasures, alas so it goes
For a criminalized man, through no fault of his own.
Misdiagnosed; forced "meds" make him worse,
for 29 years, is this lowly soul cursed?


Downward, the spiral continues to wind,
This "consumer," this "inmate" - trapped in his own mind.
Psychosis is feared and it still carries stigma,
The system is broken! (Yet the answer - no enigma.)



A "patient" he is, needing root-cause care,
But no specialized doctors...just jailers to spare.
Society punishes: out of sight, out of mind,
Justice By Tax, but justice is blind.



Road blocks and red tape, no mercy from "the man,"
Desperate to save him, the family wringing their hands.
Judges and lawyers rule the criminal court docket,
Hammer to slammer, and make sure to lock it.

Twenty-three hours a day, claustrophobia reigns,
One hour outside offered, but it's cold to the pain.
Much older than his years, an American Fail,
So many more like him - indigent and frail.

But lo!  We have records, yet no doctors take note.
A medical mimic, ignored by arrogance and gloat.
A condition requiring keen attention to diet,
Not daily lunchmeat as protein (and oo yay they fry it!)

Only once a week visits, but no siblings allowed,
Budget cuts to save money, more blows to his brow.
The low just got lower, admin canceled his Christmas
No visit from parents, the two hour drive useless.

Caged like an animal in the jail mental pods
So much for this pricey solution, Sir Moss.
Exacerbated torment, a "grey area" debate?
Punitive mindsets are black and white in this state.




Despair.  Inhumane. It should not be like this.
He's done nothing to deserve the fate that he lives.
Why are the "mental" jailed, you may ask?
We need new hospitals! Santa, is there one in your bag?

The family's prayer is a constant on our knees,
"Lord, quiet his terrors; Angels hold him close, please."
The delusions are the criminal, but he suffers their snare,
We grieve how he's penalized and how no one cares.




We ask for help everywhere, and prayers are free.
It's been too damned long, Lord heal this disease!
This person endures more than any man should,
Hindsight will prove we did NOT do all we could. 

Jailers see "bad guys" - incarceration is their job.
Please open their eyes, and teach them, dear God.
One day in heaven, he will wear the king crown,
Proud of him I am, as the world keeps him down.

Sweet dreams, brother Jeff, we hold you so dear,
May you spend holidays with family next year.
Sorrow is heavy, clouding this Christmas moon,
But we KNOW in our hearts......OUR BLESSING IS YOU. 


*******************************************************
Merry Christmas
~~~~~~~~~~~~~~



Jackie Welton DiPillo

Sunday, December 10, 2017

PERSPECTIVE #NotAPityParty - Advent in the Trenches

     It snowed where I live this weekend.  It's feeling more and more like winter and the holidays.  We put up lights, a beautiful Christmas tree, and a nativity is on display.  Beautiful family traditions.
     Living in a suburb, we are far removed from the downtown, city center.  There isn't an obvious presence of abject poverty and homelessness on display, out here in the 'burbs.  I live far from the skyscrapers and concrete jungle.  Maybe that's why I'm not "numb" and overwhelmed when I see a panhandler on the street corner holding a "need work" sign, or the bag lady under a bridge, wrapped in a shoddy blanket.  I still have room for compassion, because it's not my every day, up close.
It would be hard to see that every day, without turning a blind eye.  Even if you want to help, you can't help everyone. That's true. In my world I may not regularly see the weathered, scruffy man, walking to a shelter, hoping to have a warm place to sleep on a freezing night...  But I know him...well.  He's not a stranger.  This IS the life my baby brother has lived.