Luigi Mangione, Jordan Neely: Mental Illness in the News? One Mother’s Opinion

About a month ago I wrote about how my son, Ben, was close to homelessness. At the moment he is still housed, but facing eviction. Why? Because he repeatedly breaks the rules in the lease, endangering others in the building with his addict lifestyle. That is a consequence of his own choices, illogical as they may be. He needs treatment, and no one is allowed to step in to “require” it.

No. He is not “sick enough.” Running alongside my car last month, trying to jump into the driver’s seat to stop my car so he could have extra money? Not an “imminent danger” to himself or others.

Huh??

I beg to differ.

But there is no mandate requiring Ben to have the treatment he needs. My hands are tied, and I can only “help” from afar while trying to protect others that I love.

Lately, two events have brought the question of untreated mental illness to the forefront: the stories of Jordan Neely, who died by vigilante chokehold when he was frightening subway passengers, and Luigi Mangione, who murdered a Healthcare CEO in premeditated cold blood and is still somehow being hailed by some as a hero.

No. Not a Hero. But possibly very ill, with a family helpless to help.

Jordan Neely was diagnosed with schizophrenia, exacerbated by the tragic murder of his mother. He was homeless at the time of his death.

My son’s behavior when trying to get money for a fix (though of course he said it was for a concert) frightened his family enough for me to get a protective order in place. For now we send his money for rent and food, but cannot (and should not) let the behavior that is leading to his eviction be excused.

That’s us. As for Neely, I don’t know what went down in that subway car. I wasn’t there, but I do know this: the only thing worse than my son hurting himself would be if he were responsible for hurting another human being. That guilt…I can only imagine. I never want to know.

Had Luigi Mangione developed a mental illness in the months before his alleged act? As psychiatrist Dr David Laing Dawson points out, no one is really talking about that right now.  But signs are there, as are stories of how hard his family searched for him when he went missing.

One thing is consistent, though, in comments on social media. People keep saying, “how could they have gotten this far? Where was the family?”

When Treatment Works, The Love is Returned.

I’ll tell you where the family has been. At least this family.

This family, like so many others, has been working for years to “save” our loved one with SMI (severe mental illness) and blocked at every turn by:

• anosognosia (their lack of awareness that they are ill), 

• substance use and abuse (often a self-medicating beginning to addiction when SMI is present)

• Lack of psychiatric hospital beds

• Lack of funding for more research

• Blame for families

• Stigma against SMI,and 

• a system that puts “patient rights” to homelessness, hunger, crime, addiction, and other “freedoms” about the right to be safe and get treatment.

“This family, like so many others, has been working for years to “save” our loved one with SMI (severe mental illness) and blocked at every turn.”

So - where have we been, as my son Ben faces addiction and homelessness?

Right where we have been for the past two decades, ever since his diagnosis of schizophrenia: 

• Trying to help

• Trying to arrange help

• Fixing what we can.

• Letting natural consequences settle - usually to no avail.

• Setting boundaries.

• Leaving the door open - or closing it tight if we are afraid for our safety.

• Searching the streets.

• Advocating for change.

• Reaching out to each other.

• Reversing their bad decisions.

• Keeping young children away when our loved one is symptomatic,

• Talking to attorneys.

• Paying for rehab and “troubled teen” programs.

• Declaring bankruptcy.

• Visiting hospitals and jails.

• Educating ourselves.

• Daring to hope.

• Fighting with all our heart.
  

We’ve been right here all along. Help us help. And - unless you have been in our shoes - stop with the comments and the snap judgments. Ask us questions instead. We are living in the trenches. 

Happier Made Simple™: The 7 Core Phrases and Mental Illness in a Loved One

In the decade since Ben Behind His Voices was published, I've had the opportunity to tell our family story to a lot of people - sometimes more than once, for it is ever-evolving.

If you love someone with schizophrenia, you know this all too well. It is a life lived like a never-ending game of Chutes and Ladders, with moments of rest here and there.

The question I am most often asked, after sharing, is this:

"How do you stay so positive?"

Well.

When Life is Challenging…

It isn't always easy, as you may well know. But - here's the thing that continuously reveals itself to me, no matter what the challenge:

Yes, living happier is a function of what happens to you - no one gets through life unscathed, after all - but it is, eventually, even more a function of what you tell yourself about what happens to you.

And so, I finally wrote a book about it, and it launches officially in a couple of weeks. 

In it, I talk about the "Seven Core Phrases" of self-talk that get me through most situations, and keep me hopeful, though realistic - and, yes, happier.

Yes, living happier is a function of what happens to you - but it is, eventually, even more a function of what you tell yourself about what happens to you.

It's how I "stay so positive."

Let me be clear (and I state it up front in the book) - I cry too.

Life isn't about constant happiness. That isn't even a goal. But neither is it about dwelling on the negative when the time for action has passed, nor about stressing about things that may never happen.

So here are the Seven Core Phrases (meant to be said to oneself, not as advice to others, please) and how they help me when our family deals with challenge or disappointment:

These phrases can set your mind down a different path of association and action. In case of severe trauma, you need to process the shock and emotions first.

Be Here Now:  I use this when my son is in a good place (enjoy this conversation; savor the moment; enjoy his company) - and when he is not (this is where we are right now - what action do I need to take?)

It Is What It Is: This gets me past the moments of regret (why didn't I see the signs earlier?). disappointment (why was my son robbed of a chance to go to college?), and doubt (why me? why him? why us?). There may be no reason for Ben's illness. It simply is. Now what?

We're All Connected: Other families are going through this too. Other people have the illness. Let's talk about it. Let's help each other. Let's reach out. Let's thank the people who have chosen professions that help us (lawyers, social workers, advocates, psychiatrists, etc.)

This Is Good: Savor the moments when the stars align, and your loved one can communicate, eat dinner with the family, etc. Yes, even during Ben's ten hospitalizations, when the phrase simply meant "enjoy the vacation from caregiving for now." We remember what we savor, and learn from what we regret.

All Will Be Well: Depends on how you define "well."  Will Ben ever attain his childhood dreams? Doubtful, at least right now. We learn to adjust our dreams. And I have no idea if the Universe has a "Plan" - but sometimes it helps to believe that it does. Whatever gets you through. As I say in my book: All will be well, just maybe not the way your expected it to be.

Isn't That Interesting?:  Curiosity, and even humor, can lurk underneath the trauma and crises. There have been times (especially when in the company of others who get it) where humor has saved me from crashing; when curiosity instead of complaining led me to learn more, do more, find another way.

Whatever Happens, I'll Handle It Somehow: This gets me through more times than I could ever list. Loving someone with schizophrenia means a lot of second-guessing, a lot of waiting to see if the meds work, if they'll come home, if they will be Jekyll or Hyde at the family dinner. So we do what we can to prepare, and hope for the best after that. This phrase gets me through the times where worry is unproductive.

Want the book? You'll find it now on Amazon, in paperback or kindle - but pssst! On launch day Feb 23 the kindle will be only 99 cents for a limited time! - and I am now working on the audiobook.

I hope it helps. Even a little.

Randye  

Channeling Grief and Anger into Advocacy and Acceptance

Mimi Feldman, Mindy Greiling and I have been co-hosting our podcast, Schizophrenia: Three Moms in the Trenches, for almost a year now. Our 32nd episode this week has garnered more YouTube viewings in its first two days than any other so far, and guest Jerri Clark, our " Fourth Mom in the Trenches" for this episode, is the reason.

If you want to know more, please subscribe to the podcast on itunes or wherever you get your podcasts, and/or on YouTube. Our facebook page is @schizophrenia3moms.

Here are some of the notes:

What if: the mental health system would pay more attention, take more steps to help , before tragedy, violence, or crime finally calls attention to symptoms of SMI (serious mental illness)?

What if Darrell Brooks (charged with murder after plowing his mother’s car into a parade in Wisconsin) had been helped, and treated, instead of ignored or imprisoned? His mother, Dawn Woods, wrote a letter to the media. She, too, is a “mom in the trenches”. So is journalist/advocate/mindfulness coach Jerri Clark, our guest for this episode.

What if Jerri’s son Calvin had received treatment, despite his “civil right ”to refuse it - although the refusal itself is a symptom of his illness?

She says: 

“I watched my son delivered into society’s underbelly by design. He spent months homeless, met law enforcement again and again, and tried multiple times to die. These traumas are part of a tragic inventory of the requirements for public assistance when someone has a serious mental illness”

Beyond Hidden Valley Road: Is There Now More Hope for Schizophrenia?

What a panel! I got to interview 3 schizophrenia experts at once :

Robert Kolker, #1 NYTimes Best-selling author of Hidden Valley Road - also one of the rare non-fiction Oprah book Club selections

Miriam Feldman, author of He Came in with It, publication date July 21

and Laura Pogliano, SARDAA Chapter President and Board member, mom of late son Zaccaria, who was diagnosed with schizophrenia at age 17.

We cover, among other things:

What, if anything, has changed for families dealing with schizophrenia - and what has to happen next to improve the current situation? We touch on: Early Detection and Treatment Need to fund and advance research and find a CURE Four Pillars of Recovery Stigma - is reducing stigma enough? (no!) Schizophrenia as a brain condition, not a psychological issue the sibling experience Hidden Valley Road and the Galvin family current disabled mental health system need for education, NAMI Family-to-Family ...and more.

The Tragic Newtown Shooting: Attention Must Be Paid

The horrors of 9/11 got us into wars overseas, and the memories continued to be used to justify our involvement there. Will the tragedy in Newtown get us into a war against easy access to assault weapons, underfunded mental health services,  stalled research, and lack of support?

Never Forget. Act to Prevent.

Details continue to unfold about what might have contributed to the horrific incidents Friday in my neighboring town of Newtown, CT.

It is beyond comprehension, yet we struggle to find some threads that might prevent a repeat of it.

Many will, I hope and pray, start to listen and make changes to some of the issues involved: smarter gun control, earlier detection of mental health problems, and more access to (and insistence upon) treatment for those problems.

As we struggle to "search for solutions" (this week's topic on Good Morning America), I hope we also get to find out what Adam Lanza's mother, Nancy, had struggled with.

• Did she try to get help for her son, only to be denied because he was "legally an adult, and there's nothing we can do now"?

• Was she left with no choice but to home-school her son after he dropped out of high school?

• Was she lost in a desperate attempt to hang on to some sort of bonding with a son she loved, but was losing to mental illness? (in her case, by teaching him about guns, taking to shooting ranges)

• Did she even know how to navigate the confusing world of mental health services, only to find no road map, no support, no funding?

• Did the stigma and blame of having a son with mental health problems keep them isolated and feeling there was no community left for them?

All of these things were true for us, at times. We had to, have to, fight every step of the way to get help, support, understanding. We are lucky. Ben's nature is sweet and peace-loving. Even his "grand delusions" when in psychosis were about writing the perfect poem that will create world peace. Also, we found help and community in NAMI, and Ben got support from an ICCD clubhouse, a residential facility, outpatient treatment, and newer medications that had not existed decades ago.

But the truth of the matter is that too many familes (like, I suspect, the Lanzas) simply give up before they can find help and support. They are left to "fix it themselves." Too many families are wiped out financially (as we were), emotionally (as we often were) and socially (as we sometimes were) before they find new paths to recovery. To help these families, I wrote our book, "Ben Behind His Voices", and advocate for the kind of help that might have prevented Adam Lanza from committing the most horrific crime the world could ever imagine.

I don't "know for sure" (Oprah phrase) that this tragedy could have been prevented. But, as the mother of someone who has a mental illness and has managed to find hope, I can't help but wonder - no, suspect - that the answer is yes. This did not have to happen.

We must all fight for understanding, research, funding of services, turning stigma into treatment, and supporting the families who are, too often, ill-prepared to fight mental illness alone.