Friday, June 7, 2019

Hypothetical Poll: Mind or Body?

Serious question. 
If you had to choose to have a healthy mind or a healthy body, 
which would you choose? 




Only one or the other.  



Mind or body?   Keep it simple.  


Would anyone choose BODY over MIND?

I put this query on Facebook two years ago, today.  On that day, my brother was being criminailzed, spending months in the Oklahoma Forensic Center (OFC) in Vinita, OK, awaiting a level of "competence" to return to face trial in Tulsa.  Thankfully, we were able to save him from all that. But it wasn't easy, and it's just the beginning.

*************************



There were several reply/comments to "mind or body", including:



"... if you had a healthy body but not a healthy mind, you might be blissfully unaware that your mind was lacking. However, if you had a healthy mind but an unhealthy body, you would always be painfully aware that your body was sick. It's really a very tough decision."


To which I replied:  
 "An unhealthy mind is not bliss.  
You can't take care of your body or anything without being able to THINK.  
This is precisely why it should be obvious to some old school "minds" that torture of the brain is MUCH WORSE than torture of the body.  There is no comparison.  
Then again, I was warned that Oklahoma is medieval when it comes to mental health.
  Primitive doesn't even cover it."

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


Our family was calling a long list of attorneys at that time in 2017 in an attempt to file a GTCA tort claim before the one year deadline.

The attorneys I called said they care about the mental health situation, but they're all talk.  Just being "nice."  Nice gets us NOWHERE.  Stop with the niceties and get real about this HUGE, MASSIVE PROBLEM.  We got no attorney to file the tort.  If you'd like to see it, here's the blog link: 
https://notesfromjackie.blogspot.com/2018/09/tragic-tort-enlightenment-wake-up.html
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~




Another reply: 

 "Definitely Mind. Just saying."


And another:  
It "depends what we mean by healthy or not healthy mind.  
I am used to what my mind does, and think I can handle it, but hate physical pain or sickness - do not tolerate it well."

My reply:  
"But if you couldn't use your mind to think clearly.  That's what the mind is for...to think for us."


Several replies with the one word answer:
"Mind."



A very compassionate friend typed:  

"Either way would be miserable."


I said: 


 "Yes of course, but hypothetically.  
For instance, Stephen Hawking could still use that brilliant mind and be a force in this world for the good of many, even without the use of his body."



A sweet, long time friend said this:

"Have been living in a sick body with a somewhat healthy mind. Let me say, the pain of the body can be torture on the mind. My logical choice is mind. My experience being in pain says body. Not a decision made out of vanity at all.

My reply:  

"I'm sorry you're in pain.  My mother lives with gross pain, as well.  It's horrible."

And in a separate comment, I continued: 
"If you have a sound mind you can go to school.  Own a home.  Have a job.  
Love someone and be loved.  Possibly have children.  Be a responsible citizen.  
You make choices, positive or negative, 
but at least you're thinking isn't impaired and you CAN MAKE them.  
Without a sound mind, you have none of these.  
No one [with an unsound mind] can be in a healthy relationship/marriage...
yes you can love them, but it's all ascew.  
Irrational thinking with delusions (which are real to that person) 
bring out thoughts like "you're not my real family" 
which causes exponential tragedy, heartbreak, anger, 
and [possibly] even violence due to that former "real" family being gone.  
Loss is immense in that tortured mind.  
Mocked and scoffed and abused and mistreated and looked down on at every turn.  
Not valued as a human being. 
[Those with an unsound mind] have to live on government assistance 
because they truly CANNOT hold a job, 
even though they want to work and take pride in work."

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The choice has been taken from them for no fault of their own.  
They cannot even take care of themselves 
because for whatever reason, the thinking isn't real.  
Thinking can be ruled by delusions, or a vareity of psychotic patterns.  
Paranoia, mania, hallucinations...  Constant torment that cannot be averted.


Nothing, I say NOTHING is worse than living this life.  
I choose a sound mind ANY DAY, over the physical body.  

Until you've been around it, it's difficult to imagine the layers of complex hardships, impossibilities, voids, lost potential and dreams. 
 It's a loss of life, really.  
Without a sound mind, "life" isn't even on a real plane.  
Everything is questioned, and nothing is solid.  Very sad.  

Tragedy doesn't even come close.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

A dear lady that has a loved one affected, said a heartbreaking and true statement:

"I have said many times, 
I grieve my child that is still living."


She is not alone.  


My reply:   
"My mother has said that, too.  I'm so sorry...  I do understand."



And she so kindly said:

"I understand exactly how you feel too.  I am so very very sorry."

It's a rare person that truly gets it.


I said to someone recently in a conversation,
 "People don't get it, until they get it."  
Meaning, until they are directly affected by it.  


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
This is another one of the complexities.  It's TOO DIFFICULT.  
Everyone has trying lives and troubles of their own, so who has time, energy, or enough compassion to wrap their minds around THIS gargantuan issue?  I get it.  
This is the reason I write - in an attempt to touch people's hearts with personal stories.  
It's going to take a societal mindshift to make the necessary changes.  
If even one person is moved to care and act on that care, my job here is a success.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~



I continued on the Facebook thread with these truth rants:

"Not to mention [the SMI/Seriously Mentally Ill are] thrown in jail to be raped and beaten and left alone for months simply because their mind isn't sound.  
This would never happen because someone's body isn't working 
or because of having to live in pain.  
Then there's the part about the person without sound mind being feared.  
And homeless and hungry and dirty and diseased, 
and the family can't have [this person] live with them because they're sometimes scared [of being hurt] due to delusions.  
Imagine how a mother feels if her son is not of sound mind and this has been his life.  
Yet, he is still kind enough to say "I've lived a good life" while incarcerated, because jail has been such a "normal" for him.  
GOOD GOD.  Why can't we help these people???!!!!!!!  I'm so mad."

Then things got really real. 

My post says:

"And this is truth.  I'm not afraid to say it.  
I'm jealous of all the other mind issues that garner compassion and love, 
instead of fear and punishment. 
 I'm jealous of alzheimers and autism.  I'm jealous of the developmentally disabled.  
This is how horrendous it is.  
Those HORRIBLE AND DEBILITATING DISEASES everyone has compassion, empathy and love for.  [The difference is], they don't get thrown in jail for those diseases.  
And yet...someone without a sound mind can "test" SMART, so they don't qualify for the same level of government assistance that the developmentally disabled do.  
They get NOTHING.
ONLY DISDAIN and FEAR and PRISON and NO LEGAL HELP and kicked to the curb.  
It's a harsh reality but IT IS REALITY.  
How sad is it that I'm jealous of those horrible diseases?!  
I do apologize. I realize it's offensive.  
But for my brother's sake, 
I wish he were treated with compassion and kindness and love 
and people brought casseroles and well wishes.  
But that's not the reality of serious mental illness.  
[At times] we fear it. [But most of the time, it's daily dealing with the delusions].  
We want it to go away.  FOR REAL WE DO.  
But in the mean time, how about we learn to be good people and CARE for them, 
instead of shaming them and punishing them?!
 It's hard.  But until we look at it realistically, nothing will ever get better."



Then the friend that has the mentally ill child commented again:  

"I wish I could like this a million times.  Because a million times I say yes..yes..yes..you are right.  Every bit of it right.  This breaks my heart.  All of it...then you have the looks and stares.  And goodness if they happen to talk to themself or some other odd behaviour.  The, can't you control him.  Or just the looks of fear and distain in general as though we the parents or family members in some way have caused illness."



My reply to her vulnerable and heart-wrenching comment:

"So true.  
So heartbreaking.  
Blame and shame game.  
Horrible and tragic on every level."


*************************


That was the FB post on my wall, June 7, 2017. 💔


I feel bad saying I'm jealous of those with terrible diseases.  
Please know, that comes from a place of constant trauma.  
I'm not diminshing others' pain and suffering.  
More specifically, my envy stems from THE REACTION of the world 
to those suffering from the other brain maladies.  
The way they are treated by society.  That's what I'm referring to. 
I'm only human, so please forgive me.  
 God help us, all.
***** None of these debilitating issues are choices. ***** ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


Improvements since that 2017 post:  
This family paid brave, private attorneys a boatload of money to do what should always be done: 

Defend the rights of the seriously mentally ill.  

We are proud of this effort, and grateful beyond words that we saved our loved one.  It shouldn't take six figure $$$$$$ and half a year of legal safeguarding to prevent the punishing of these disabled individuals.  The result:  All charges were dropped.  They were bogus.  The system for these indigent, suffering citizens is set up for failure, and has to change.

This is why we continue to work VERY HARD every day, to develop appropriate assistance.  The Legal nonprofit is forming, and looking strong!  Attorneys deserve to be paid for hard work. And mental health work doesn't currently generate income.  Thus, coming soon... #WJWMHLF

It's a long, slow road, and we will not stop until the future never again mirrors insane, repetitive, past practices of an antiquated, backward, punitive system.  People with Mental Disabilities should NEVER be punished for their disability.  It's beyond wrong.


For Jeff, and all the other "Jeffs" out there.

~Jackie Welton DiPillo

Sunday, April 21, 2019

Samaritans: Some good. Some not so good.


The journies of those diagnosed with severe mental illness (SMI) are harrowing.   No mincing words.  It's very very difficult.  It's also very very difficult for the family.

In a conference call this week, the psychiatrist told us that ninety percent (90%) of families with SMI cases have no contact with their mentally ill family member because it's too hard and too "unpleasant."  

That's the understatement of the century.

Our family member left his Residential Care Facility (RCF) this week, and the family wasn't notified for almost six hours.  He is court ordered for treatment, so the RCF notified the police to be on the lookout.  We are grateful for that.

We didn't get any sleep for fear he was dead or God knows what.  This used to happen often.  He has hitchhiked across the United States mulitiple times in years past.  But since he is now fifty years old with a body that's falling apart, it's not something we're particularly used to, anymore.  It has always wreaked havok on our nerves.

The RCF where he lives is in a remote part of Oklahoma.  We are eternally grateful he has this place to live, as it's the one and only place that suits his basic needs.  He NEEDS the care they offer.  If he didn't have this place, he would end up criminalized again, as has happened countless times.

The next morning around 8am, the family was literally dialing the phone to report a missing disabled person, when he called.  He made it to McAlester overnight, walking, and with two rides from a couple of kind Oklahoma Highway Patrol officers.  Another civilian man also gave him a ride, and left his business card.  This man even gave our loved one a pair of tennis shoes, as he had gotten blisters on his feet and had abandoned his shoes on the side of the road overnight. God bless that man. A true good Samaritan.  (I won't mention your name, but we will never forget your kindness.)

McAlester is our childhood hometown.  This loved one was in the 7th grade when we moved to Jenks in 1982 - the biggest school district in the state.  Without going into the arduous story, his life went immediately downhill, as it was just too hard on this sensitive teenage young man.  He had already endured childhood traumas (physical, emotional, sexual) and bullying that he internalized and none of us knew about for years.  His grades went from A Honor Roll in McAlester middle school, after only 9 weeks at Jenks, he had Ds and Fs.  The move was breaking him.  He was thin, frail, poor, in a single parent home.  Mom moved to try to better their lives, giving her more job opportunities in the city.  She has fought against all odds to better their lives, for decades, and still is.

But he has missed McAlester ever since.  This is where all his positive memories are.  He misses something that isn't there any more.  I read recently that when someone is traumatized, their psyche and emotions get stunted.  And it does seem like our loved one is stuck in a childlike state, much of the time.  And in this childlike, traumatized state, he has been thrown in jail and prison, he has been homeless, starving, raped.  He has been force medicated with prescription drugs his body cannot metabolize in the name of treatment, and he always got worse.  In the midst of this unbelievable life, he would give his coat to someone that needed it more than he did.  He would buy another homeless stranger food with his last dollar.  This is the kind of person he is.  And he has never had a substance abuse issue.  He does not use street drugs.  His heart is broken, and he longs to be happy.  But his life has been harrowing and fraught with complex traumas ongoing at every turn, nonstop.

He is the strongest person I know.

When he called, he was using a phone at McAlester's Good Samaritan Shelter.  He han't been to that shelter in over three years. But on this day, they refused to take him in.  We know a shelter is not a real solution, but it was Holy Thursday and Good Samaritan Shelter said no to my brother in crisis.  Let that sink in.  That is the reality.  He just wants to come home.

Definition of Samaritan from ©Positivewordsdictionary.com http://positivewordsdictionary.com/samaritan/
1.  a biblical do-gooder who helped an injured man in need.
2. someone who works for the Samaritans - a crisis relief organization.

Our mother had zero sleep all night worrying about him.  She had a full day of events on her calendar for Holy Thursday and missed them, due to his emergency.  Her life is always on hold for his, and she is wearing down after all these years.

Here's the perspective:  Our loved one lives on a very meagre disability income.  He has never owned a phone, a car, or a home.  He can't hold a job.  His mental illness disability doesn't mean he isn't smart.  He's very smart.   It's different for those with other types of mental handicaps, due to the nature of SMI many times exhibiting delusions or hallucinations, which are 100% real to the mentally ill, disabled.  Plus, IQ is oftentimes very high, as opposed to those with intellectual disabilities.  This is a different ballgame, and the "unpleasant" is sometimes more like scary.  Therefore, compassion is generally lacking, and it's usually fear that greets the SMI, disabled.  People are afraid to come to the aid of someone ranting about paranoid delusions.  And to me, the irony is, anyone would be paranoid if you'd have been treated the way he has always been treated.  People just do not understand.

But that's what I'm here for :)

Anyway, that's probably what happened at the shelter.  They probably feared what might happen. But isn't this discrimination?

So mother, in her relief, immediately got in her car and drove around town until she found him.  She bought him some food, and then made the five hour round trip to return Jeff to where he lives at the RCF. 

We are so thankful he is alright. That is the bottom line. He was saved by some real good samaritans, once again. 

This story is repetitive and needs a real solution. This is too much for our 75 year old mother.  She lives on a limited income. Her son's trauma is neverending, and so is hers.  

Our "system" is beyond inadequate. We need long term care facilities that understand these complexities. This is exactly why our jails and prisons are over half full of people with a mental illness diagnosis, and why we are forming a nonprofit to tackle these hardest issues. 

It's been 30 years, but we aren't and won't give up. Real solutions will need much support. Our mission is across the board and will benefit every entity, especially tax payers. 

The suffering continues, but SURELY it opens people's eyes to the very real and tragic issues this person... this family, faces. There are thousands of families that need much more help, and much less abandonment, punishment, and rejection.

Today is Easter.  Sadly, the disappointment I feel toward the Good Samaritan shelter in McAlester settles like a crown of thorns... It is a tangible example of what the severely mentally ill face, and how difficult it is for families to deal with crisis situation. 

We will be praying for them.  If you have some spare prayers, keep 'em comin'.

Thanks.

~Jackie Welton DiPillo


Sunday, April 14, 2019

#AppleOprahHarry - GeneSight® for 2020 Docu-Series

Hello, BlogSpot readers!  It's been awhile...

Things have not slowed.  To the contrary - so many things going strong, going not-so-strong, and just going.  Hardly time to breathe between advocacy trips and working diligently on the nonprofit for mental health legal reform.  #WJWMHLF  Coming soon Soon SOON!!

On March 25, 2019 big news that Apple and Oprah® are partnering to produce a multi-part documentary on mental health.  https://techcrunch.com/2019/03/25/oprah-offers-more-details-about-her-partnership-with-apple/

Then, last week, even bigger news.  Britain's Prince Harry will team up with Oprah on this docu-series.  https://www.patentlyapple.com/patently-apple/2019/04/oprah-teams-up-with-britains-prince-harry-to-deliver-a-painfully-honest-yet-empowering-apple-tv-documentary-for-2020.html

How exciting!  Yes!  

Years ago, I used to write to the OPRAH Show, telling of the plight of those like my brother, and the horrors of criminalization they faced.   I never got a reply, so put my focus elsewhere.

I am happy that mental health issues have now reached mainstream, marketable status.  I say this in sincerity, because it's been a very long time coming.  After a generation of deinstitutionalization, and increasing homelessness and the mentally ill filling prisons and jails, I'm seeing millenials REALLY getting it, and stepping up.  #HOPE  And stigma is MUCH less than it used to be...muchmuchmuch.  Thank goodness.  So, the more we discuss, the better.

This project will continue to lessen stigma, empowering those suffering from depression, anxiety, addiction, trauma, loss, and PTSD, worldwide.  This is GREAT!  But what I'm wondering after reading a miriad of articles and social media comments, is will this powerful endeavor dive into the issues of those least served?  Those diagnosed with Severe Mental Illness are shamefully neglected in the big scope of things.  To me, the powerful are exactly the folks that imho MUST tackle the hardest issues.  Although so far, I have not seen indication that SMI will be a focus. We will see.

If Schizophrenia, ShizoAffective Disorder or other of the most complex spectrum disorders are too "big" for the likes of #AppleOprahHarry (and I hope they're not!) - then we will continue to find gratitude in ANY exposition on mental health issues.

This blog, the 501(c)3 being finished as I type, this family, and so many others.  Unless you expose yourself to the extreme. most difficult, most tragic, most expensive cases, the road to improving the ultra dire circumstances for the SMI will be blocked by blinders, ignorance, and fear.  This is why I'm here, typing.  #exposure

Now that I've gotten that off my chest, my goal today is an attempt to bring attention to the one integral, factual, scientific, provable, HELPFUL item we have experienced in three decades of involvement in the mental health system.

I've mentioned it before:  GeneSight.com saved my brother's life in 2018.  I PRAY the AppleTV Docu-Series coming in 2020 will know about GeneSight®  And if they don't YET...I'm here to make them aware.

This simple test is a tool that prevents possibly making symptoms of mental illness worse.  Due to knowing whether the specific medications/treatments can or cannot be metabolized by the individual DNA of the patient, it's a front-line guide to affecting positive results.  And tragically, when not utilized, the standard of care/physicians have no way of knowing if a medication will help, hurt, or do nothing.  If meds help someone, great.  These imperative answers are easily and affordably found via this simple mouth swab.

A picture is worth 1,000 words

Here is a SAMPLE /example of
GeneSight Psychotropic Gene-Drug results.
[Nine (9) PDFs]

1. Antidepressants
2. Anxiolytics and Hypnotics
3. Antipsychotics
4. Mood Stabilizers

  GREEN = Use as directed
  YELLOW = Moderate Gene-Drug interaction.   
  RED = Significant Gene-Drug interaction.    
(see notes)

REMEMBER:
This is specific to each patient.  
If the person cannot metabolize any of these medications, 
the doctor must use one that the patient CAN metabolize.  











These drugs are $$VERY$$ EXPENSIVE!
Literally millions of dollars are wasted on sometimes just ONE PATIENT.
How many SMI cannot metabolize meds they are being force-injected with?
How much more waste and damage can Oklahoma and the nation afford?  None.
This is a huge and very much underutilized SOLUTION.
EVERY DOCTOR NEEDS TO USE THIS TEST PRIOR the use of any brain RX.
This is a foolproof guide.  

It saved our loved one from being further damaged.
We are eternally grateful.
It will save many others.

Please spread the word.

Oprah Winfrey 
@Oprah 
@OWNTV

HRH Prince Harry  
@kensingtonroyal 
@sussexroyal

Apple™️ 
@AppleTV 
@Apple

Best,
~Jackie Welton DiPillo

(As I finished this just now, Tiger won the MASTERS...first time since 2005.  Wow.  What a comeback.  Here's to my brother, and the thousands if not millions of underdogs, that have yet to live their massive potention.  We can help them get there.  You just have to believe and WORK HARD... )



Thursday, March 7, 2019

A Mother's Pain. When will the mental health system improve?

While searching for online items from past years to support our nonprofit narrative, 
google led me to this article my Mother wrote, during a time of grief over her son - my brother - and his long-suffering circumstances.  

To honor this TRUTH, her words will replace of my blog, today.  
This needs to be read, and understood, deeply.

From her heart.  Eloquent.  
These beautiful words encapsulate so many things that 

MUST CHANGE.

Behold, a mother's pain...



October 7, 2015
Beyond Murphy

by- Marilyn Welton

It’s 9/11/2015.  On 9/11/2001, I was at work in Tulsa, OK at the church I attended.  The pastor put a television in the lobby of the church as the Twin Towers were being destroyed by terrorists.  I remember how stunned I was, not at what was happening at that moment, but by my own lack of emotion.  And I questioned – why.  Why was there no feeling inside of me for this crime against my country, for the deaths of over 3000 souls?  
It took some time but I finally understood.  It was because in my own personal life, residually, and in the life of my dear son, Jeff, for 10 years prior to 9/11, we had been experiencing our own kind of terrorism.  This terrorism was committed against him by psychiatry and mental health courts by forcing him to take psychotropic ‘medications’ that he, literally, physically, could not tolerate because of their side effects.  Side effects, such as akathisia and hyperthermia and others, that caused him so much pain that he was terrified of them and still is.  So much terror that he would run away and try to survive on the street any way he could.  It was, residually, against me because as a mother, it zaps the life out of you not knowing where your son is or how is he surviving. 
This started happening in 1991, when he was first put in the mental health system.  The running away and abruptly stopping the drugs prescribed by psychiatrists. Then he would either end back up in a hospital somewhere or coming back home; and, because he was in violation of a mental health court order to take the drugs and he wasn’t, and because he wasn’t, he would be in rebound withdrawal and/or severe detox, he would be acting so weird that he would be picked up and be rehospitalized again – and again – and again.  Usually, the drugs and the dosages would be changed on each rehospitalization.
No, I do not believe that he was in decompensation, or he was just getting sick again as I was told.  I believe that he was in detox because of stopping the drugs cold-turkey.  We were told that he would have to stay on the drugs the rest of his life. That was not acceptable.  It was always a dilemma.  Why do some psychiatrists not know that these drugs cause dependence?  This disbelief by a psychiatrist was presented to me in a treatment team meeting held regarding Jeff in 2011.  She wanted proof that these drugs cause dependence.
It is my opinion that my son is brain damaged now.  It is very dangerous to abruptly stop taking psychotropic medications.  I don’t call them medications anymore.  I call them drugs.  I think of medications as helping.  I think of drugs as hurting.  I think he is brain damaged now because in 2007, after 16 years of this, he started verbally expressing fixed delusions or false memories. 
It takes me a while to catch on.  It is my firm belief that Jeff has been so brain damaged by drugs he has been forced to take since 1991, that I might never get my son back.  What I had to do on Sunday, September 6, 2015, is tell Jeff that as long as he is at my home, that I would not go back there.  No mother should ever have to tell her own son that.  It’s too much of a heartbreak. He wants to be where I am.  Every time he would run away from where he was, he would always end up back at my home, no matter where I was, or how cold it was outside.  What does a mother do when her son knocks at her door at 2:30 a.m. and it’s 20 degrees outside?  Out of deep love, a mother allows her son to come into her home.  But there’s a catch.  He refuses to leave.  There is so much wrong now that even though she tries to let him stay, because of fixed delusions and false memories caused by the drugs he was forced to take, she can’t because there is abuse now, verbal, emotional, and the real possibility of physical abuse.
So, one Sunday while away from home, I called Jeff and told him to leave and to never come back.  He told me to bring his bank debit card to him and he would.  I did.  He did.  And while hitchhiking again, he was picked up by a Deputy Sheriff and taken, again, to a crisis stabilization unit, where he will, again, come to mental health court in an Oklahoma County and be committed, again, to a psychiatric hospital and be forced to take more drugs, again.  Then, he will be deemed stabilized, again, and he will be discharged homeless.  He has already called me and told me that he will return to the small city where I live and stay in the men’s shelter.  What I know is that he will not stay at the shelter.  He will not take the drugs he is prescribed and will be in detox of the drugs he was given while hospitalized.  He will, again, appear at my door and want to come in – and he will want to stay.  This forces me to file a Protective Order against my own son, my Jeff.  
So – will I get to see my son again?  Will I get to give him a Christmas gift again or share thanksgiving dinner with him again.  Will our family ever get to be together again to celebrate a birthday?  Will he be able to get housing anywhere again?
The mental health system has destroyed my Jeff’s life.  It has residually destroyed my life.  I am only one mother out of countless others whose son has been stolen from her by psychiatry and mental health courts.  Jeff is only one son whose life has been destroyed by prescribed psychotropic drugs..  The mental health system must be changed.  There is a dire need now for recovery homes, houses, units, farms, ranches, etc. for people whose lives have been stolen from then by psychiatry and the current medical model of psychiatric treatment.  It destroys lives.  It destroys families.  It destroys hope.
Thank you, Mom.
Jackie

Tuesday, January 1, 2019

2018: Observations & The Rundown

2018 began with trauma and despair, grasping for answers.

Our Jeff was facing LIFE in prison, due to being a "repeat offender", which is the ultra simplified version.  In actuality, it's well documented, even on the news clips from the arrest, that this was a man suffering from mental illness delusions.  Every arrest has been due to this, yet he still gets punished for his disability.

Jeff has never been a criminal.  Jeff is a victim of being damaged by medications his body cannot metabolize, and that actually made him more psychotic, instead of less.  He is 49 years old, and this has been going on for 30 years.

DAMAGED by the system, and by "treatment".  Oh, they've treated him, alright.  There are volumes of stories about how he has been "treated". Mistreated. Raped.  Held in seclusion. Beat up.  Restrained, phsically and chemically. Trauma from a young age, nonstop.  HE IS A SURVIVOR.

Looking back on a breakthrough year, here's the rundown.

January 2018
Armed with momentum from nonstop networking... call after call, conversation after conversation, searching for a lawyer for years, to DECRIMINALIZE our mentally ill loved one, who was suffering severely in DLMCJC Tulsa County jail (yet again).

The family put our money where our mouths (and hearts!) were.  The stars lined up when we landed the perfect legal team.  Brave, ultra intelligent, rare.  In a state that has zero mental disability attorneys, these are legal SUPER HEROES.
We were breaking new ground.

FEBRUARY 2018 brought:
Knowledge-sharing.
Expert-finding.
Evidence-gathering.
Meetings that slammed doors in our faces -
yet became open windows of FREEDOM!
A very challenging month.
But this is when the axis began shifting, from:

REVOLVING DOOR
crisis center>to>homelessness>to>jail>to>homelessness>to> crisis center>to>jail>to>homelessness>to>crisis center>to>homelessness>to>jail>to>homelessness>to> crisis center>to>jail>to>homelessness>to>crisis center>to>homelessness>to>jail>to>homelessness>to> crisis center>to>jail>to>homelessness>to>crisis center>to>homelessness>to>jail>to>homelessness>to> crisis center>to>jail>to>homelessness>to>crisis center>to>homelessness>to>jail>to>homelessness>to> crisis center>to>jail>to>homelessness
...AND ON AND ON AND ON...



MARCH 2018 
...blew in a high stakes, dramatic entr'acte of law-and-order that turned the tide of torture and death, toward safety and care, via some never before litigated mental health laws.  
Amazing what following the law, can do.

The winds of change. 
We unearthed these buried statutes, and were able to enlighten everyone.  And when I say everyone, I MEAN EVERYONE.
(That's all I'll say on that. Must save the meat of this shocking true story for the movie!)









APRIL 2018
The curtain was drawn back.
No more crying "ignorance."

For, Behold!
"Consumer Bill of Rights"

Listed on the Oklahoma Department of Mental Health and Substance Abuse Services' website:
For those that don't know, the word "consumer" refers to patient.  
From the POV of the patient, that word is insensitive, hurtful, and has to be changed.


Document is found specifically at this link:

We found out WHY 
our loved one 
got worse in the name of mental health "treatment,"
by asserting this right: 


"Each consumer has the right to request the opinion 
of an outside medical or psychiatric consultant 
at his or her own expense 
or a right to an internal consultation upon request 
at no expense."

!!!EUREKA!!!

I'll bottom line it:
We brought in an outside psychiatrist.  This doctor was able to administer a DNA swab, to show which medications the patient can metabolize, because each individual human being has unique DNA. Should be the FIRST thing they do, prior to forced "meds".  Seems like a no-brainer, right?  What better way to zero in on the most effective, least damaging, least expensive, approach?  But caregivers RESIST (HARD).  YOU HAVE NO IDEA.  Mind boggling!  This simple mouth swab - developed by the Mayo Clinic - is a foolproof tool to GUIDE the caregivers to appropriate treatment, and lessen the guessing game of "this drug or that."  You see, not everyone's DNA can tolerate certain chemical concoctions.  Some people are allergic.  So, we exercised the patient's rights, and got it done.  What we learned is...  
Sometimes 
the pill and/or injection 
IS THE PROBLEM  

Plus, the arrogance of caregivers that don't believe the patient when the patient or the patient's family/advocate says the drugs are harming the patient is a massive, over-reaching, expensive issue that needs a seriously humble solution.  Laws about this are broken every day, at every facility.  This leads to the criminalization of the patient.  There needs to be an oversight committee to make sure the patient's rights are being upheld and not usurped by misinformed employees and omitted by those that should know better!  Hospitals need to be training employees on the rights of patients and the treatment advocate...blatantly ignored.  This all adds to the patient's suffering.

MAY 2018
The day we got the www.Genesight.com DNA mouth swab results, proving that three decades of forced meds have indeed harmed our loved one, felt MIRACULOUS.  FINALLY!  Relief found, in genetic facts.  Complete horror at the 49 legal pages - the database/list mom has kept of every psych drug Jeff has been forced to endure, and every "hospital" that exisits in Oklahoma that he has been a patient at over the years. It's daunting, and truly a miracle Jeff is still alive after decades of harmful drugging, homelessness, jail, hunger, and abuse.

Jeff's story is an important story.  
His story will be told.
This is just the beginning.

The damage is beyond immense and extends exponentially to mom, and the rest of the family.  
We were told by one of our attorneys that families always give up on their loved one in the mental health system, because it's too hard.  
You got that right.  
WAY TOO HARD. 

JUNE 2018
The legal process found everyone looking for an appropriate place for Jeff to live, upon discharge from the crisis center.  (I've blogged about this.)  There is a gaping hole in a system that allows vulnerable psychiatric patients to be put on the street, without any way to know if the drugs are helping or hurting them, and for them to maintain meds if they ARE helping them.  The burden is huge.  This hole needs to be acknowledged and closed, with appropriate housing/hospital options, so the "frequent flyer" psych patients can start to be productive citizens again, instead of the perpetual cycle/trap many of them are in.  Jeff has been sent from hospital to homelessness many times.  But our legal team prevented it in 2018.  We are eternally grateful for that.

JULY 2018
Mental Health Association of Oklahoma told us they cannot serve Jeff this time, because his needs are beyond their scope. It amazes me that the MOST chronic, get the LEAST care and assistance.  Plus, the HUD regulation prevented Jeff from retaining his eligibility for subsidized housing options.  Another gaping hole in the system that I've written about. We will be on that, soon.


Our attorney found the one and only place for Jeff to live, that serves his skill level.  
On July 19, 2018 Jeff got his life back.  What a moment that was.  
Long time coming is the understatement of the century.  
Complex details that I've written about as it was happening, so I won't repeat, here. 
For the first time in Jeff's life, we had hope.
A place to live where people actually care about him.  
A huge VICTORY in the grand scheme of his life.  

But It shouldn't have cost one family so much to prevent this tender human from being punished because he has a disability.  It was worth it, and we have no regret, but it was expensive.  And....our WJWMHLF nonprofit will be up and running soon in 2019, which will help change the system for everyone, not just for our loved one.  I'll be blogging about that...  SO much, it's overwhelming.

AUGUST 2018
Jeff's story begins shifting here, and I am not going to divulge details, even though he has given permission.  What was stunning, was the timing of our father's health declining, overlapping from Jeff's discharge and new living situation.  This subsequently took over MY life, as our father is 82 yrs old, depends on a walker, lives alone, and he has no one to help him.  I had already spent most of 2018 in Oklahoma back and forth from where I live in Georgia, and suddenly I realize dad needs me.

Why does dad's story matter here?  Because Jeff and dad are 50% related by DNA, and dad had one of his rare bouts of "episodic mania" starting summer 2018. I couldn't believe the timing.  It also matters, because it highlights how important it is to know that hydration and nutrition affect mental status, while doctors only focus on psych meds, as usual.  So I had to stand firm, and be strong, to prevent dad being damaged by the psych drug guessing game.

I am my father's Designated Treatment Advocate under Oklahoma Statute under 43A O.S. § 1-109.1.
http://www.oscn.net/applications/oscn/DeliverDocument.asp?CiteID=436655.
As outlined in Jeff's story, Dad's and my rights as his TA were ignored.  
This is how it ALWAYS goes.

SEPTEMBER - DECEMBER 2018
Without giving specifics, Dad spent over two months in one hospital.
It's way more involved than that, but I'm refraining from too much detail.  #LongHaul 

*Did you know that UTIs (Urinary Tract Infections) can cause delirium?
http://www.benrose.org/resources/article-delirium-uti.cfm

*Did you know that Sepsis can cause an abrupt change in mental status?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3673822/

*Did you know that dehydration can cause sugar/glucose levels to spike?
https://www.everydayhealth.com/type-2-diabetes/symptoms/surprising-causes-of-blood-sugar-swings/

*Did you know that hospitals count carbs for diabetic patients, but don't care if the diabetic patient binges on diet pop, potato chips and sugar-free deserts - as long as the carb count is adhered to?

*Did you know that when a patient has a surgery at one hospital, but ends up in another hospital, there is a fear-based lack of continuity of care, that creates more problems, end up costing more money and could become permanent issues?

*Did you know that when an elderly patient is in ICU, then moved to the main hospital, the staff sometimes doesn't get the patient up, and they could lose their ability to walk?

*Did you know that stress releases cortisol in the body, and cortisol causes glucose levels to rise?
https://insulinnation.com/treatment/how-stress-hormones-raise-blood-sugar/

*Did you know sugar causes inflammation in the brain, which can cause depression and mania?
https://kellybroganmd.com/from-gut-to-brain-the-inflammation-connection/
and
https://www.psychologytoday.com/us/blog/the-depression-cure/200907/dietary-sugar-and-mental-illness-surprising-link
and
https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(16)30262-0/fulltext

*Did you know there are promising studies on probiotics to treat mania? https://www.health.harvard.edu/blog/probiotics-for-bipolar-disorder-mania-2018062514125

* Did you know administering first-generation psych drugs to the elderly can cause death twice as often?  https://www.webmd.com/alzheimers/news/20120223/dementia-some-antipsychotic-drugs-riskier-than-others#1

*Did you know that a small percentage of patients given injections of certain psych drugs, lose bladder function? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4730936/ 
and https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3488871/

*Did you know that even if a judge tells a doctor to try to get the genesight swab done, and even if the hospital has the swab kit in another part of their building, it still may not get done?

*Did you know, sometimes doctors may say one thing to the patient at bedside and say something completely different/quite the opposite in private to the family/advocate that witnessed the patient/doctor conversation?  And when you address it with the hospital, fear may become a power play, which could lead, once again, to the treatment advocate rights being violated, undermining the health of the patient.

*Did you know, hospitalists, 95% of the time, don't return family/treatment advocate requests for a call back?  And they get mad when social workers tell them to.

*Did you know, that if a hospital chart says a patient has a psych issue, that all SNF's (Skilled Nursing Facilities) will say no, they can't take that patient?  Makes me worry about these days, 1 in 6 Americans, popping psych meds. When YOU'RE elderly, you will not have a SNF.  Think about that.
https://www.scientificamerican.com/article/1-in-6-americans-takes-a-psychiatric-drug/

*Did you know the doctor always knows best - even when they don't?!
#CultureOfArrogance #StandardOfCare #MedicalModel

BEWARE of issues you might never consider, 
because no one cares for your loved one like you.
STAY ON THEM, lest severe complications and even death are real posibilities.

The things we learned this year have BLOWN OUR MINDS.

ALL VERY BACKWARD.  
ALL VERY WRONG.

This story is astouding.  I realize I'm not painting a clear picture, using generalizations.  But I am chomping at the bit to WRITE THIS STORY and SHOUT IT FROM THE MOUNTAINTOPS.  Now that the storm has passed and we were able to save dad's LIFE, maybe I can have time to carve out the screenplay.  All the records have been tucked away for safe keeping, and shared with appropriate folks.  And nothing important ever changes, unless we go through the fire to make it happen.  So, that's what we did.
This fall was unreal.  My dad almost died.  
If I hadn't have fought for him, he would've been stuffed in a nursing home, all his assets liquidated, and forgotten about.  
NO WAY I was gonna allow that.

But we stuck it out.  Dad and the family endured shocking things I will not divulge here, and now, Dad is doing great.  Many serious, life-threatening health issues later, a couple of surgeries, thirty-five pounds gained, and he is about to have the best year of his life.  At some point I will send an update to those doctors that were giving up on him, so they will know WHY I bucked their system.  Dad has years left in him, and he brings joy to many with his music, wit and charm.  He has left a very positive impression on those that didn't scorn him because of multiple health issues that caused a period of manic behavior.

NOTE:  Psych MEDS, Dad DID NOT NEED.  Oh, they still gave them to him in secret...and I confronted those caregivers.  It's not right.  And over time, a nurse told me she agreed that the psych med was doing nothing.  I told them it wouldn't.  And now, his new/current doctor in Assisted Living has taken him off, and is listening to the family, as he should.  Thankful for that.

IT WAS ALWAYS MORE ABOUT 
* (DE)HYDRATION
* STRESS
* NUTRITION/SUGARS ... Which is what I told them, but the doctors were taught in med school to deal in medications, not natural solutions.  But TIME HAS PROVEN all we tried to tell them, to be true.  Thank GOD my Dad made it through the storm. 

*********************************************

In this family, the suffering of loved ones isn't left in secret silence.  We are their voices.  And this year brought some long overdue attention to wrongs that were made right, in hard fought battles to end the criminalization of my brother, and standing up to MANY "powers that be"in both his and Dad's cases.  So many instances of the family being right, against the grain of medical professionals.

We'd rather not have to tackle these issues.  But standards of care sometimes need to be rattled when harm has been done over and over, year after year, and the patient getting worse and worse.  We are paying attention.  We did not allow the "life in prison" Jeff was facing.  It made me older.  It made me wiser.

I'm sorry to be so vague.  I'm just a sister, writing about life-long family issues, while not divulging too much.  Must protect privacy of all involved.  But the complexities are layered in the abyss.

For sure, in 2018 there is more gratitude than in years past.  The world seems to be catching on, slowly.  Mom isn't alone in her advocacy journey for Jeff, any more.  And DNA doesn't lie.

Eternally grateful for the extremely intelligent folks 
that have been on this maverick journey with us, this year.  

* Milestones reached * Mountains moved * Loved-Ones Lives Literally Saved *


We are tired.  But even though it was a gargantuan year, 
it's only the tip of this iceberg.  
And our ship, moving forward
even though it IS a titanic voyage... will not sink.  
Love does not shrink, or tremble, 
especially when real change has begun.

After we catch our breath, hit refresh, refuel, refill our wells... This destined journey will continue.  There's no way all the suffering so many dear human beings have endured for decades will not, in the end, have great meaning.  So, we document and discuss.  We present facts and resources.  We learn and share.  Communication is key, and we must not fear ruffling some feathers, here and there.

A far cry from one year ago, when Jeff was sitting in jail, secluded and delusional,
facing years of punishment he did NOT deserve.

I was told by a highly respected attorney who is a lifelong friend, that he had never seen an outcome like we got for Jeff.  He called it "Herculean".  I won't disagree.  That's what it felt like.   Dad's too.  And it was all worth it. 
It's 2019.  Onward! 
Here's to positive change like never before.
Time to
STOP THE MADNESS

************************
Jackie Welton DiPillo