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... )