An Inmate's Mom: More Powerless Than Ever

Well, here’s a new brick to add to the wall separating me from parents of “normal” children. I am now the mother of an inmate.

Ben has been arrested, and is in jail (not prison, I’ve learned the difference) awaiting his court date.

His crime? He’s accused of trying to snatch a purse (unsuccessfully, but it still counts as larceny). He swears he didn’t do it. It is the victim’s word against his. But my child - my man-child - looks like a thief these days. Though he has been living in a group home, he looks homeless. He won’t let a dentist fix his teeth. He has lost weight and his clothes are shabby because he wears them for days on end. Even his bicycle (which we just paid $500 to have repaired, good as new) looks homeless: the tire off the rim, the paint scuffed.

My son’s appearance itself is a liability when it comes to trust.

Did he do it? I hate to say this, but it is possible. Ben’s life, so filled pre-Covid with work and purpose (yes, even after diagnosis of schizophrenia, but on a different medication), has recently become scattered, desperate and empty. Covid had closed the restaurant business where he had worked for years as a popular server. That was when he lost everything that had given his life meaning.

Back in the hospital for nearly six months. Back on (different) meds after I’d called a hearing for a court order to medicate. Discharged to a group home.

Still. Ben had tried to make a life again. He had valiantly landed a retail job nearby. He’d d tried so hard to succeed at this. He’d walked 3.5 miles to get to work, always on time.

But his odd behaviors between injections of Haldol made him look distracted, even lazy. Of course he never disclosed his illness. He was eventually let go, and I think that’s what broke him. He lost hope after that loss.

Then: boredom, purposelessness, hopelessness. The perfect, awful storm for someone to turn to drugs for relief. What drugs? Can’t say, but we suspect more than marijuana, based on how quickly his money had been disappearing and poorly managed as of late.

Stupid schizophrenia.

The shock of his arrest has worn off for now, and as usual the best support is coming from those who have been there, the power of community. But there are now a lot of new things to learn - and the number one lesson is this:

You thought you had no say in your loved one’s care before? Try having a child in jail, awaiting a court date. He wears a standard uniform. You, parent and conservator, are also lumped into a category: inconsequential. You have zero power.

No one returns your calls. Not the public defender, not the jail “counselor”, not the Marshal's office. There is no way to find out if he is getting his meds, or where his backpack is. Your inmate child can call you, but you can’t call him. Can’t get a message to him. Can’t really help him, except to maybe pay for a lawyer other than the public defender.

So you learn, again, to let go of control, of influence - and even, a little bit, of hope.

The bar of what counts as the baseline of normal gets even lower.

Life with a child with schizophrenia. And now, clearly, addiction. And still worse now, one who has been arrested, fingerprinted, incarcerated.

Yet he is safe for now. And, oddly, doesn’t seem to hate it there in minimum security. He has more people to talk to, play cards and chess with, drink instant coffee with, than he has had in months. He has structure again. He has fewer choices - and is clean and sober.

The future? As always, I’m doing what I can, and letting go of what I must. The specificity of those choices is different now. The bar has indeed been lowered. But the stakes are higher than ever.

I hate schizophrenia - the great thief of lives that could have been. When will we fund research to find a cure, and improve the system that allows lives to get to this point?

The fight goes on.

Growing Up Too Fast: When Your Parent has Serious Mental Illness

Our podcast, Schizophrenia: 3 Moms in the Trenches , continues - and to listeners who asked us, "what about the children raised by parents with SMI?" - we heard you.

This episode (42) is for you!

Guests: Karen Comba, author of The Snipers We Couldn't See: A Memoir of Growing Up with My Mother's Schizophrenia

And Christina Lord, mental health advocate (Canada) daughter of a dad with SZ, 

First, your stories.

How has the experience impacted you (Karen writes about life “with footprints on her back”)

How did writing or sharing about it help? Or did it?

How did your experience- and the unpacking of it - inform the work you now do?

What do you most want other children of parents with SZ to know?

What do you want others to know - teachers, practitioners, other adults in a child-of’s life?

How to find happier places for your mind?

Links:
https://christinalord.ca/
https://www.karencomba.com/

Books we mention: (besides our own, Ben Behind His Voices, He Came In With It, and Fix what You Can)

She's Not Herself, by Linda Appleman Shapiro (formerly published as Four Rooms Upstairs)

I'm Not Alone: A Teen's Guide to Living with a Parent Who Has a Mental Illness, by Michelle D. Sherman

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”

Difficult: Mothering Challenging Adult Children through Conflict and Change, Book Review

Author Judith R. Smith had me at the first glance of the callout quotes:

"You can divorce a difficult spouse. It's much harder to give up on a difficult child."

and

"When a child is diagnosed with serious mental illness, they do not die - but they are changed."

How do we continue mothering, when our children are long past the age when we thought we'd be graduating from the phase of hands-on support? What do we do, what do we feel, what do we fear when our stepping aside could spark poverty, homelessness, even violence for our children?

In this thorough, empathetic account of this important previously-swept-aside issue, Judith R. Smith combines eight years of research and grimly honest stories from mothers  of children who have SMI (serious mental illness), addiction, and other issues we never expected to face in our kids.

We learn about the problems presented by not only our own family challenges, but also cultural expectations about motherhood and system failures of support. We feel less alone when hearing the stories and reading the facts. Then, Smith takes us through steps including attitude change, getting support, practicing self-care, and ways to stay safe and possibly even help our grown, difficult, children.

There has never been a book like this. If you're a mother still inside the journey no one wants to speak about, get this book. You'll be glad you did.

Available February 2022, Rowman and Littlefield

Daring to Hope Again: Faith or Foolishness?

The game of Schizophrenia Recovery Chutes and Ladders (or Snakes and Ladders, for you Brits) continues.

In the past few weeks, Ben has climbed some ladders, made some progress. Yesterday's family visit was full of simple pleasures again:

• a car ride that was full of conversation, not the torture of awkward silence and small talk

• Ben and a friends watched a movie in our living room and actually made it through the whole thing

• We talked about his future, his feelings, his sobriety journey (now counting again, 15 days)

• Ben was less defensive, more forthcoming

• I brought up my concerns about his current med (Haldol) and my wish that someday he might try Clozaril again so as to avoid the side effects (tardive dyskinesia, mainly) of the Haldol - and Ben seemed to listen. (not agree, but he did listen)

These days are miracles. These days give me hope, though I've learned not to predict beyond a good day.I don't predict. But I can hope.

• I can hope that Ben will continue to value his sobriety and the meetings that help him.

• I can hope that the side effects of the Haldol are not permanent.

• I can hope that he can again be a part of family celebrations.

• I can hope that, perhaps, one day, he will gain insight into his illness and serve as an inspiration to others.

• I can hope that he will, again, be able to work, to have friends, to feel purpose and joy.

• I can hope for a cure for schizophrenia.

Hope is not foolishness. Hope is a celebration.

If I'm wrong, at least I'll have had a day of seeing my son's smile again, or actually enjoying talking with him, of seeing that he might be able to get some of  his life back.

And that I can't do it for him. All I can do is love him (always), set limits (whenever I have to), and do the behind-the-scenes advocacy that is necessary to keep him afloat.

(where are his social security benefits?  Does he have money to pay his rent? Can he work again someday? Where? How? Are there activities he can participate in right now, to give him the structure and purpose he lost when he lost his job due to Covid and then turned to smoking weed instead? ....the list goes on. We orchestrate behind the scenes.)

A good day. I'll take it. 

Hope for "Normal" Days Springs Eternal

"Mom, I sometimes I thought I'd never actually have a pleasant day with Ben again. Today was so great!"

Exactly my sentiments, honey.

Families of those with Schizophrenia know:  "normal" days are miraculous. And we treasure. Every. Single. One.  Because, well, we might not get more of the same. no guarantees.

Hope springs…and sustains

Blog followers here know that we've had quite a few, um, adjustments to make re Ben in 2020-21. From full-time employment to hospitalization, to back in group home care...and now, addiction to contend with. It has been a tough year for us, sure --- but so much worse for Ben, especially now that he is "well" enough to realize that his life has gotten so messed up.

He has lost so much.

Stupid Schizophrenia. Thief of lives.  Robber of relationship. Obstacle to useful employment. And so much more.

And yet. There is hope - and moments to treasure again. Grateful, grateful for:

Ben, 25 days clean now. (his addiction is marijuana). One day at a time. He is going to meetings. Fingers crossed. But - wow - it is so different when he isn't stoned.

Two days in a row of family fun - yes, fun! Ben is on Haldol now - not my favorite, as I fear the permanent side effects, but Ben seems happier on it. Letting go of control...as best I can. It's his life. But I must say that things are better than expected, even though Haldol doesn't do much for the "negative symptoms" of his brain illness.

But  - some miracles in the past few days, on family visits:

He went swimming! He used to love it so much as a boy, but for some reason hasn't gone in the pool for five years (I suspect some sort of psychosis belief that kept him away, but I'll never know for sure) -it was always, "Maybe next tiem" - but he went swimming with his young nieces and nephew, and actually played with them. Played!

We did a family trip to the local Aquarium and Ben was actually helpful - the kids adore him, and he was present and involved.  And - during lunch, he turned to his sister (as the kids were doing their "I-haven't-been-to-a-restaurant-since-Covid- and-forgot-how to-behave" routine) and said, "wow, sis, you have your hands full, don't you?" 

Empathy!

If you have a relative with SZ, you know what a miracle this is.

Yeah, he's trembling a bit, and I fear the presence of tardive dyskinesia - a possibly permanent side effect of the med Ben is on.

But all we have is today, and what is, is.

So I'll take the miracle of having made some more good memories with my son. Grateful And always hopeful, and ever watchful.    

Guest Blogger: CJ Hanson, Mental Health/Brain Illness Advocate

One day into June, and the official #MentalHealthAwarenessMonth is over - but the fight is far from over.

Please welcome guest blogger, C.J. Hanson, with these thoughts regarding her brother who has serious brain disease.  CJ is one of the authors in Dede Ranahan's award-winning book,

Tomorrow Was Yesterday.

"I have strong opinions regarding the many different causes for the continual denial of help and easier access to real treatment for my brother since the beginning of his trauma and brain illness of Schizophrenia and Anosognosia.

We initially thought the care he needed was going to be available to him given how severe his multiple disabilities including having lost his eyes in an accident and then brain illness.

We each have our own obstacles. But, like most families - access to that elusive help - was slammed shut on us because Mark is an adult who happens to have anosognosia related to the brain illness.

Waiting for him to figure out what is best for him.. what is safe for him... that he even has a serious mental/brain illness... will never happen.

CJ Hanson, Mental Health/Brain Illness Advocate

No one can understand the respective roles that we are each left to play amidst the absolute expectation from society that we should just innately have all the answers, when we have a loved one with SMI/SBD - an expectation that we are fully capable to physically house and care for someone so floridly psychotic after he has fallen 34 years into the abyss and the tiniest of cracks of his mental illness. Our shattered and fragmented Mental Health Policy & Laws which includes abandoning the most vulnerable of those among us and their families is cruel.

Many of us are just family members struggling to be what we are not. - Medical professionals, Neuro Psychiatric professionals, Medical intervention, Legal and Financial advisor, Psychiatric Technician, Social Worker, Protector, Nurse, even Guard - day and night. Every day and night.

From what I have seen some of the top advocates for Mental Healthcare Reform are those who have paid the ultimate price already... either the loss of their loved one to suicide, abuse, injustice or just completely and forever lost in their illness.

Some family members, advocates and activists are still smack in the middle of their struggle to avoid those outcomes.

But, we are all advocates and activists - for Serious Mental/Brain Illnesses and the change towards quality of life, comfort, justice and fairness in #MentalHealthcareReform. Which means including the family members."

~ CJ Hanson

PS - I hope that my friends, group members, and followers will visit the new Facebook page which will follow the development of the movie documentary and give us a "like," follow it... and if you are moved - to contribute to the production and success of the documentary. Please share the link to the page on your timelines and to your friends too for the success of this important project. We will be successful with your help!

https://www.facebook.com/noonecaresaboutcrazypeople

#LPSReform

#HIPAAReform

#NationalShatteringSilenceCoalition

#MayisMentalHealthAwarenessMonth

#NoOneCaresAboutCrazyPeople

The Extra Innings Movie - and Podcast

A few years ago, I had the honor of speaking at an event  to increase mental illness and suicide awareness, and to built support for an independent film called "Extra Innings." -described this way on  imdb: "Set against the enchanting backdrop of 1960's Brooklyn, Extra Innings tell the story of a young man who is caught between pursuing his dream (baseball) and staying devoted to his Syrian Jewish family that is afflicted with mental illness."

I have stayed in touch with the creator of the film, and last night was honored to be a guest on his podcast.  We talked about schizophrenia, family, stigma, support, and so much more.

Listen to the Full Episode: talkradio.nyc/shows/extra-innings
You can see or hear the podcast here: 
or here.

Meanwhile, about the movie:

It did get produced and released - and was winning awards all over the place and set to go to movie theatres...and then Covid hit. We all know all about that.  But - the good news is that you can now see it on Amazon Prime. Don't miss it!

As for the podcast, here's what Albert had to say:

“The love is pure, but the rest is difficult. I wrote it for families to not feel so alone.” Randye Kaye on what motivated her to write her book chronicling the journey of the development of her son’s mental illness.

Check out this exclusive clip of Extra Innings: Covering All the Bases! This week’s guest was actress and author, Randye Kaye.

Randye Kaye makes her living as an actress. In 2011, she published her memoir Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope, based on her own experience understanding and living with her oldest child’s schizophrenia. She hosts two podcasts: The Life Talk Show and Schizphrenia: Three Moms in the Trenches.

Find More about Randye Kaye
Website: randyekaye.com

Albert Dabah is a certified life coach and therapist who began his career as a social worker. He founded his video production company, Simba Productions, in 1979, and recently directed and wrote his first feature film, Extra Innings, which is based on his own life.

Life Coaching: adabahcoaching.com

#ExtraInningsMovie is available to stream on Amazon Prime, and on demand at Google Play, Fandango, Apple TV, Vudu, and DVD through our website at extrainningsmovie.com
Watch the trailer! bgpics.com/movies/extra-innings/
Watch Extra Innings: bgpics.com/movies/extra-innings/

The Public Cry: #freebritney! Is There More to the Conservator Story?

We become conservators to rescue.

Listen, I want Britney Spears to be happy too. She's incredibly talented, seems nice, obviously loves her children, and has worked her ass off pretty much all of her life. And, yeah, her dad seems like a controlling asshole. Also, it has to suck to have your adolescence questioned and paraded all over the media. She was not treated with respect, to say the least. The paparazzi and press were shameless in their interference - and, well, sheer gall. Anyone might crack under that kind of pressure and scrutiny.

(Imagine if all Your teenage love starts and fits has been plastered over the tabloids. I mean, Seriously.)

But, after watching  Framing Britney Spears (and to channel Carrie Bradshaw), “I couldn’t help but wonder.....” even now, are we getting the whole picture of her conservatorship?

This is not a popular take right now. And I’m not saying that Brit shouldn’t be “set free”.  Honestly, it’s none of my business.But, since I am a conservator myself, I’m just saying there might be more to the story. Have we fully seen in that documentary what a conservator can do to help? To avoid disaster? To protect the conservatee? We have not.

Even Brit herself, speaking out after the documentary aired, has said “everybody has their story.”

Here’s mine.

I applied for conservatorship in 2003 when my son Ben was about to sign papers to “set himself free” from the psychiatric unit in the hospital. He was psychotic, confused, a danger to himself - but would have been released anyway because he had “rights.”

But by applying for conservatorship and right to treatment, I bought him some time - time to stabilize and to plan for discharge.

I became Ben’s conservator (of estate and person) and fought for his “right” to be treated for a serious brain illness - and kept fighting. Because of that, he finally was stabilized enough (5 hospital stays later) to be placed in housing where he could begin to rebuild his life.

And, I had the right to information each time he was hospitalized again. Without those papers, I’d not even have been able to know where he was.

In the 18 years since that decision (one I have to renew every year), I’ve stayed as far as I can from making decisions for Ben. Not all conservators decide what a person eats for breakfast (like Britney's father in the documentary). However, I have been able to step in and help when necessary.

Some examples:

• Ben thought he was “helping a co-worker” by co-signing a car lease agreement for her - without my knowledge. When she defaulted and he was hounded by debt collectors, I was able to get him out of the agreement.

• Ben decided to sell a perfectly good used car we had gotten for him (he paid us back, bit by bit, and had been free and clear) and lease a brand new one....to the tune of almost $800 a month.He went over the mileage and “solved “ that by leasing a more expensive one. We have to declare bankruptcy to get him out of that debt.

• He is a shopaholic. I know it makes him happy to feel normal...but did he really need a set of pool balls and cues when we don’t even have a pool table? I can’t really stop him, but I can keep enough money set aside (if he has any) to make sure bills are paid.

• He has now been hospitalized 9 times. That’s a small number compared to others I’ve seen. But my conservatorship gives me the right to know medical information, from the smallest detail (yes, he is a patient there) to the larger issues of what a discharge plan is.

• I can take charge of getting his disability payments back. This is absolutely essential right now, as he is back to square one and has no other income at all.

• While he was in the hospital, I was able to keep up his credit card payments ((of course, he was maxed out and only paying minimums)

“But (I hear you saying in your head) why don’t you let him just make mistakes when he hits bottom won’t he learn his lesson? The answer is… No. With schizophrenia, even treated schizophrenia, learning from your mistakes is often not part of the picture. I wish it were.

I do not decide what he eats for breakfast, who he hangs out with, where he goes. I am a safety net, and he has fallen many times. Mostly I let him make his own decisions, but within reason.

Like today:

“Mom, did I get a stimulus check? Where is it?”

“Yes, and I put it aside to pay your rent until your social security is approved.”

“Oh, ok.”

(Because I know, from experience, that if that check is at his disposal he will not rest until it has all been spent on clothing he does not need. trust me , I know. I cleaned his room while he was in the hospital. He could also use it to buy pot. Nope. Not on my watch).

Conservators are not all dictators or assholes. Most of the time, we don’t even want the job. But someone has to do it, and if we can prevent total disaster we step up to the plate. Most of us strike that balance of letting go and stepping in. or at least we try.

So - i feel for Britney, I really do. But that documentary was very one-sided. I would just need to hear the other side of the story. Wouldn’tyou?

He's Out! But For How Long? Family Input Ignored.

It was so much easier then…

“Dear Mom, and whoever else may or may not be listening. This goes out to my mom with deep heart-feltedness. For whatever I’ve done in the past, I’m extremely and genuinely sorry for, and will forever be.”

I have this recorded on my iPhone.

Why? Because one of the first things Ben did after I picked him up from West Hills Behavioral Hospital a few days ago was to apologize.

I was so shocked I asked him if he’d say that again, into the phone, and make it official. He laughed (laughed!), and said sure.

It was a good moment. I’ve learned to treasure those, since they tend to be fleeting.

I was right. Unfortunately. Shit.

Ben had been in the hospital for over five months this time. It was a nice vacation for us (sounds cruel, but if you e been there you get it), though beneath it all is my mother's heart that hurts for my son and all he'd lost after losing his full-time restaurant job to the Covid economy. I’d watched the downward slide for months, as he bravely (in my estimation) held on to hope and tried to fill his days with purpose. That’s didn’t go so well. Marijuana use increased, and so did his determination to not take his meds. All kinds of tricks, and we were powerless to do much except supervise, nag, accuse, try to outmaneuver him. It had worked...for awhile.

Now, after the hearings giving us right to treat and commit “over objection”, Ben finally stabilized - but not on the medication that had brought him back to a place where he could work as a restaurant server....and fool people into not knowing he has this devastating brain illness: schizophrenia.

No. Because he “doesn’t like the side effects “ of that medication (and I don’t blame him, but still...), he has chosen (and had the right to) an old antipsychotic, Haldol, which works okay but can have even worse (and permanent) side effects.

Yes, even in the hospital, we can win the right to treat, but not to choose the right medication. He has “rights” , which cause him harm.

This medication has brought Ben back, sort of - and it breaks my heart to see how hard he's trying to seem like his old self - but he definitely is not the same. As my daughter says, “I look in his eyes and he just isn't there.”

Best - and hardest - decision we made was to have him discharged to a group residence (let’s call it E house)instead of to our home where he'd been living for the last nine years. He is doing his best to be enthusiastic about this. He has not once guilted me, not once complained about his new situation. Yet. I’m crediting the group work he did in the hospital, for that (and for the apology).

Still, it’s such an echo of where we were back in 2003, when Ben was accepted into his first residence. The house seems nice, the staff seems caring. Hard to tell some of the staff from the patients...until you look and listen a bit more closely. Ben has his own room (for now), and I’m grateful there is a plan in place to ease him gradually into independence.

But. And there is always a but.

He is slipping. He’s on a time-released injection of the haldol. This is good, until it starts to wear off. And he wasn’t kept in the hospital long enough to gauge the half-life of the injection. Daily boosters can be given orally, but he hasn’t been prescribed any daily medication except something to prevent side effects (like twitching.)

And every day since I dropped Ben off, he gets worse and worse. And it has only been 4 days.

I’m spared long visits because of the pandemic, (sorry, but it’s true. Visiting is painful when he deteriorates), but when I dropped off his Medicare card the day after he was admitted I could see it. Couldn’t focus, trying too hard to be sociable, repeating things. I know the signs, believe me. And...I’ve seen him when he’s truly functional (or what passes for it when your brain is filled with constant interference) and believe me I know the signs.

We cannot wait for his next injection appointment. It will be too late. We need to fix his treatment NOW.

I call the staff, from their parking lot, to tell them what I see. Even though they barely know him, and have never seen him well enough to handle a restaurant rush and still get kudos on Yelp, they see the decline too. They agree with me. So....I call his case manager.

This is a a Friday.

I’m told the psychiatrist (Dr. K) will check on him on Monday.

I say Monday will be too late.

Case manager says he'll talk to Dr. K and get back to me.

Of course he doesn't get back to me.

The staff at E house tells me not to worry, as they will "get him to the hospital if it gets too bad."

This is exactly what I am trying to prevent.

It’s like I have to train a whole new set of staff.

Hello, please meet my real son. This is the one who, when balanced, can get a 50% tip from a happy family. Who can make a great speech at his sister's wedding. Who can muster some genuine caring and empathy for others.

When treatment works, he is more than just “stable”. He is wonderful.

And right now he is neither. He needs better medication and he needs it now.

It’s such an echo of 28 years ago when he was first placed in a residence after his 5 hospitalizations in that one year.

Only then, he was 21 and I was 51. Now we are approaching 38 and 68. In all that time, are there no other options? Have they not realized that family input matters?

When will this horrible illness get the attention it deserves?

Five Months a Patient (Psychiatric Unit): Daring to Hope Again

One week from today, Ben will be discharged from the longest hospital stay of his life. Five months. Five months! Believe me, I am grateful. Grateful that he was safe, cared for, and somehow has returned from the abyss of his illness. Again. 

Not gonna lie, though: we’re also very grateful for having had a break from living with him. What a blessed empty nest. No staying up til 3 AM to make sure he takes his meds. (Up until Covid hit, Ben had  worked as a restaurant server, thanks to those meds he hated). No cigarettes on the front porch. No huge messy vegetarian cooking marathons. And, mostly, no tension in the house from secrets kept, delusions hidden, resentments festering. 

How, after nine years of success, did Ben wind up at square one, delusional and certifiable? I can blame Covid-19 (see this earlier post) for the job loss, the structure crumbles, the community scattered, his purpose stolen – but, truthfully, he was teetering on the brink of the rabbit hole even before that. Excessive pot use, self-caused financial stress (he leased a Lexus? Really?), and mostly – mostly – resenting and cheeking the medications that provided the foundation for his ability to function in reality. Every night my husband or I could feel the hatred coming from Ben as we supervised his medication he desperately wanted to not need, all his charm having been used up at work and none left for his family.

But there’s only so much you can do if he backwashes into the water and then swears he didn’t.

We got by. We all squeaked by. Until August 29, 2020. Another night spent in the police station, calling the on-call psychiatrist, watching my son disappear before my eyes. Again. Talk about the worst Déjà Vu ever.

Fast forward, I guess…past more court hearings, renewed conservatorship, Ben’s refusal to go back on the meds that work best for him, awkward zoom calls (no visiting allowed, thanks Covid), paperwork trails to get him back on disability and out of debt. Where are we now? 

He finally seems stable again – but he’s on Haldol, a medication that can have devastating – and permanent – side effects. Also, it doesn’t help much with the negative symptom of schizophrenia, so I’m not a fan. But Ben has refused to do the blood draws required to be on Clozaril. So here we are.  And - so far, so good. 

It seems okay. He called me yesterday – three times, as he needed a favor – and we actually had a conversation: about his bank account (yes, I deposited money so he won’t be overdrawn), his car (repossessed, and he’ll have to declare bankruptcy and start over again), his housing (back to a group home, which has thankfully accepted him), about origami (he taught everyone on the unit how to do his favorite creations, something he recalls from years ago), and even about politics. He is aware that we have a new President, and that in itself is a miracle, since five months ago all we got out him was the occasional grunt and suspicious staring and mumbling to his voices.

When Ben learned that I had taken care of his affairs, he said, “Mom, you’re the queen of the world” – and he meant it to be funny, not a delusion. I have my son back – well partially. As always, I'll take it. Better than nothing.

In one week, he gets placed in a residence with a day program included. He has no car, no job, and will be living a half-hour from us. But it’s better for him, and for us. I hope and pray that he doesn’t walk out the door of that place when the nurse is coming with his medication. It had happened before. And then– back to the psych unit.  The revolving door.

I have my son back – well partially. As always, I'll take it. Better than nothing.

But, for now – we hope. And express thanks to the staff that has kept him safe for five months, the medication that seems to be working, and that there was bed available for him.

Can things fall apart again? Oh, heck yes, you bet they can. But dare we hope?

Absolutely. We dare to hope. No use predicting disaster (then we’d have to go through the emotions twice, and all we’d get is the booby prize of having been “right”. (Ugh) – all we can do is our best to prevent it.

Welcome back, Ben. I’ve missed you. Not the illness – I hate schizophrenia with all of my being. But now that I see glimmers of my son again. Yes. I’ve missed that. 

One step at a time. And avoid the rabbit holes. 

"Fix What you Can": Apt Philosophy for Family Mental Health (and book review)

Mindy Greiling and I have many things in common, though we've never met. The biggest shared experience: we both have sons with schizophrenia, and we haven't given up on them. As she says in the epilogue of her new book,  we are "the best mothers we can be."

As any parent knows, good parenting is a shifting balance between stepping in and letting go. When mental illness and substance abuse enter the picture, that balance is ever more precarious. And "happy endings" are, often, only fleeting respites from trauma, until the next chapter begins.

Still, we love.

Still, we hope.

Still, we fight.

Mindy, for much of this memoir, is able to channel much of this fight into her work as Minnesota State Representative - a position she held for twenty years, advocating tirelessly for improvements to the mental health laws in that state. She's received more than eighty awards for her legislative and advocacy work. She has so much good reason to be proud. 

But her son, Jim, still has schizophrenia. That, as we know all too well, sucks. And in this memoir she is raw, real, and informative about her family's journey, and also her work to enact changes in the system.

I highly recommend this memoir for anyone who wants to know more not only about the family experience with schizophrenia, but also why it can be such a long and difficult process to change the legal barriers to getting our loved ones the help they so desperately need (but think they don't).

When  I wrote Ben Behind His Voices almost ten (!!) years ago, there were very few memoirs about the family experience with schizophrenia- and even few that offered any hope or action steps.  Since then, I've seen (and read) quite a few - and this one stands out for its honesty, its perspective (Mindy is the granddaughter of, as well as mother of, someone with schizophrenia), and its knowledge about  advocacy and the way things work in the world of state legislation. 

Mindy Greiling is a fine writer - you'll keep turning the pages. You'll feel less alone, if you share this issue. And you'll get a really accurate ride on the roller coaster of  family experience with "recovery" - what happens after someone with severe mental illness is treated and released? I know this ride all too well - am on it right now, as my son Ben is nearing the end of a three-month hospitalization after nine years of relative success. 

Highly recommended.

He Came in with It: Book Review

Miriam Feldman's wonderful book will be released tomorrow, and I highly recommend it.

Ever since my book was released (when there were very few memoirs around that dealt with schizophrenia in a child) they now seem to be everywhere.  I have read many of them, and Miriam's memoir stands out as not only relatable (I marked so many passages I almost ran out of ink) but also poetic, artistic, and funny. Miriam is an artist (murals and more) by trade, and her artistry definitely extends to the written word.

Plus she made me laugh out loud - something you wouldn't think you can do when your heart is broken by a devastating, unrelenting illness thrust upon your  beloved child.  But you can, and we must. 

Miriam Feldman takes us through  the facts,  the loneliness, the strength, the love, and the roller coaster of hope and heartbreak.

You will fall in love with her son Nick, and grieve the loss of what might have been...and hope for what might be. As I do every day with my son Ben.

I felt such a kinship with Miriam that I interviewed her (and Robert Kolker, and Laura Pogliano) as part of my "Power of Kinship" conversations. 

Hope you'll read this book!

Schizophrenia and the Family: Exhausted, Broke, Helpless and Blamed

It isn't easy, loving someone with schizophrenia.

Well, let me rephrase: Loving is easy. Loving is in our soul.

Liking? Sometimes much harder.

Caring for? Protecting? Supporting? Very very hard.

Families Hanging by a Thread

Families who have not abandoned their loved ones with schizophrenia (and many, unsupported and at the ends of their ropes, feel they have no other choice) are left holding so many loose ends it's easy to feel hopelessly tangled up all the time. And that's on a good day. On a bad day? We live in fear.

We fear - for our loved one's life, sometimes for our own lives. And it often feels like there is nowhere to turn.

As for us - well, as of this writing, we're still one of the lucky families. After eight hospitalizations, after seven years in a group home, after homelessness and arrests, our son Ben is back home with us and stable on medication. Well, for today at least. We take it a day at a time, and each day we get that passes without major crisis feels like a gift - a gift that could get ripped away at any time.

I often speak to groups about the Four Pillars of Recovery Success that have enabled Ben to rebuild his life after his periods of psychiatric care: Treatment, Purpose, Structure and Love. Yep: he has a job right now, and a free place to live (with us), and a social life.  Yay. I know what a miracle that is. But, as I've written before, that success is precarious. If one of those pillars should crack, we could be back at Ground Zero in the blink of an eye.

Still one of my most popular posts, here and on HealthyPlace.com , is this one:

Schizophrenia and Parenting: Step In or Let Go?

Though six years have passed since I wrote it, it still gets comments. And in those comments I am reminded of the deep, mournful, and sometimes terrifying challenges families - and parents specifically -  face when schizophrenia moves in.

Here at our home, we face a relapse within 36 hours if Ben refuses to take his meds. I am prepared at any moment to call the police, kick him out, make him homeless, take his car keys away - and possibly face unpredictable consequences if we have to do that - for no family can know what the voices might tell their relative to do. That is our reality. And so we make sure, every single friggin' night, that he takes his medication and doesn't spit it back out. I hate this. It is hard on our freedom, on our work life, on our marriage.

And yet - we love him. So we do it. Because, even though Ben looks at us like we are the enemy during "meds time" - we know that with treatment he has been able to hold down a job, drive a car, play with his baby niece, help a friend.  And that without it - handcuffs, ambulance, hospital, and worse. We've seen it way too many times.

Other families are not so lucky. And tomorrow, we might not be either.

Every day, we face the possibility that Ben might refuse his meds, and the actions we must take if he doesn't.

But wait, there's more.

• There is literally no place for him to go if we have to remove him from our home. Some work success (precarious tho it is) meant that he lost his Social Security support and some medical coverage.

• What if his car is repossessed? It is leased ( he did this without our knowledge) - so guess who helps with payments when he can't do it? (Like when he recently lost his job due to a restaurant closure and can only find work 2 days a week).

• What if he gets sick? What if we lose coverage for his meds?

• What if something happens to us?

Yes, we know we are lucky right now. Ben's schizophrenia is a severe case, and we are lucky he responds both to the medications, and to our house rules that he must take them. I know many families who would love to have such "problems" - as their loved ones are either homeless, in jail, in danger...or no longer here.

Laura Pogliano and Zac

My friend, Laura Pogliano, was a "Fortunate Mother" too, as noted in USA Today. Her son Zac, took his meds, called schizophrenia a "rip-off" but was rebuilding his life too. Like my Ben, Zac wanted independence as the next step - and Laura helped him get to that goal . Like us, her family walked that fine line between stepping in and letting go. But. in his own apartment, Zac passed away in his sleep, possibly due to the heart problems caused by his medications. She mourns him still - and devotes her life to the rest of her family - and to advocacy  with Parents For Care.

But so many - too many - families are living in a world of real fear. Note some of these most recent comments in the HealthyPlace post mentioned earlier:

Now (my son) is out (of the hospital) and has made it clear he still sees me as a dangerous person. I’m terrified that if this delusion is part of his “narrative” that he isn’t able to separate from, that I’ve lost my son and won’t be able to get him back. Our relationship had become remarkable strong since he grew into adulthood and counted him not only as my son but as a friend who I enjoyed spending time with. Now suddenly in a matter of weeks our relationship is shipwrecked and I am, in his eyes, some dark mastermind with a network of spies.

Its an impossible situation and I’m heartbroken at the thought of us becoming estranged over this - Dubya, Feb 2017

I am at a complete loss. I am watching my 20 year old son suffer in jail in a very psychotic state. I feel like he is going to die waiting for a state hospital bed. I am in unbearable pain for him. - Carrie, Feb 2017

My daughter’s violent behavior at times is so disturbing. Like so many others she won’t stay on her meds which causes everyday to be unpredictable. Caseworkes always find her extremely difficult to deal which makes it hard to get any help... Living with her is to the point where i feel I can’t take it anymore… - Carol, 2017

I just finished Googling “how to deal with an older brother with schizophrenia”… I read something about cutting ties eventually for the sake of my own mental health. I also read about putting him in 24/7 care group homes but what if he doesn’t want that? I don’t know what to do. Do I even have an older brother? Does that make sense? When am I speaking to my brother? When am I speaking to the schizophrenia. - Someone from Minnesota, Feb 2017

I’m afraid to be alone in the house with him. He sees a psychiatrist and a therapist once a week, has a therapist come to the house, takes meds (tenuously), but nothing has helped. He’s still aggressive, abusive, isolated, paranoid, delusional, and irrational. He’s threatened us verbally and brandished a knife on several occasions. I love him so much and I’m incredibly sad for him. He talks about suicide almost daily. He is just suffering, always fearful, always sad and miserable. -  Antionette, Feb. 2017

Sadly, these are but a handful of comments - from last month alone. All over the nation, families are left to deal with mental illness alone. Where can they turn? What can we do? what can they do?

This situation demands attention from legislators, researchers, and the judicial system. Families living with mental illness need help - this cannot be swept under the rug. 

What Exactly is Schizophrenia, Anyway?

I often get this question, even years after our family's openness about Ben's mental illness.

Recently I came across this guide from Juno Medical, and it explains it all really well!   

Here is an excerpt:

What is schizophrenia?

The word “schizophrenia” derives from the Greek “skhizein” (to split) and “phrēn” (mind) and indicates a long-term mental disorder that involves cognitive, behavioural, and emotional dysfunctions.

...

What are the symptoms?

Symptoms of schizophrenia usually start between ages 16 and 30 and can be divided into positive, negative, and cognitive ones.

Positive symptoms

Positive symptoms refer to an excess or distortion of normal functions.

Hallucinations: hallucinations can involve all 5 senses (hearing, sight, taste, smell, and touch). Hearing voices is the most common type of hallucination in schizophrenia. People with the disorder hear voices that talk to them about their behaviour, give them commands or threaten them or others.

Delusions: delusions involve having a distorted image of what is happening in the reality. Delusions can be persecutory, where people believe that others are trying to harm them or plotting against them, and delusions of reference, where people think that the environment is directly related to them, e.g. they believe they receive special messages through the TV or the radio.

Disorganized speech and behaviour: the person shows incoherent speech that impairs effective communication as well as difficulties in completing basic day-to-day activities. It also includes bizarre or inappropriate behaviour.

Negative symptoms

Negative symptoms refer to a decrease in socialization, motivation, emotional responsiveness, and movement.

Apathy: the person shows lower interest in activities that used to be part of his or her everyday life, such as work, studies, or sport. Personal hygiene and appearance may also suffer noticeably.

Lack of emotion: patients show diminished affective responsiveness or display inappropriate reaction - or no reaction at all - to either good or bad news. People with schizophrenia may also show anhedonia, which defines an inability to experience pleasure.

Poor social functioning: the person avoids contacts with other people and prefers to spend time alone and isolated.

Cognitive symptoms

Cognitive symptoms involve difficulties with memory and concentration.

Disorganized thoughts: schizophrenia sufferers may demonstrate disorganized thinking and difficulties in expressing thoughts or integrating feelings and behaviour.

Difficulty concentrating: the person displays attention deficit and the inability to gather and process information and make decision out of it.

Poor memory: the person will have trouble keeping recently learned information and use it to carry out a task.

• Hebephrenic schizophrenia: also known as disorganized schizophrenia, this subtype involves incoherent, illogical thoughts and behaviours, and emotional blunting.

want to know more? check it out!

Here is the link to the full guide from Juno Medical.

Many thanks! EDUCATION IS POWER! 

Treatment Pays Off in Schizophrenia, Even if "Unwanted"

One young man with schizophrenia makes the news this week because he attacked his parents with a rock. The Mom says "I am afraid of my own son now." According to the article, their son was refusing the treatment and medication available to him from the Kentucky assertive community treatment program. The treatment was voluntary. The young man said "no thanks." And nearly killed his parents.

My son, Ben, also diagnosed with schizophrenia (and a very severe case, I am told), gently lifts his baby niece out of her swing, sings a silly baby song to her and gets a huge smile from her in return. Then he showers, shaves, irons his shirt, and heads off to work.  He has been a server at the same restaurant - full-time - for over two years.

In Ireland, a man is finally committed to a mental health facility - after killing his parents with an axe. This treatment comes, obviously, way too late.

My son's phone constantly rings with texts from friends, who are trying to arrange a "game night" at home fortomorrow evening. Now he has friends again - but it took years to rebuild relationships, after years lost to hospitalizations and periods of relapse. We hope he never again needs that level of help. If Ben continues with treatment, we may get our wish. But there is no guarantee when it comes to mental health. This we know, all too well.

Five years ago, right after my book Ben Behind his Voices was published, Ben went off his medication and went back into the hospital for the eighth time. It took seven weeks to engage his willingness to "go back on meds", after which he moved back in with us - with strict rules to "follow psychiatrist instructions." Why? There was no other way we'd allow him to live with us.

some of the latest info on schizophrenia treatment

The truth is: treatment makes all the difference. That's why we, Ben's family, "require" it in order for him to live with us. And, yes, we supervise it - staying up until 1 or 2 AM five nights a week to do so. Because, without this, we might have to be frightened of our own son too. Instead, our biggest problems resemble those of parents raising a growing teen - messy bedroom, sloppy compliance with curfews, uneducated financial decisions - even though Ben is 34 years old.  Not always fun, but we'll take this level of challenge. It's annoying at worst. With one in four families dealing with mental illness in a loved one, I know many who would give anything to have "problems" like ours instead of the stigma, guilt, helplessness, grief and fear they experience every day.

Oh, we are not without fear. We feel like our life is lived with fingers crossed - because two days without treatment would change everything. We've seen it happen before.

Ben is still rebuilding his life - and his treatment is a huge part of that journey. Without it, all he has built could topple like that first straw house in the story of The Three Pigs.Treatment works - and in our case it simply cannot be "voluntary." We won't allow it.

We know what we'd have to do if Ben were to suddenly refuse treatment - refuse to allow him to live with us - and it's terrifying.We've done it before, much earlier in this process, before we understood his diagnosis. Ben was homeless for five months when he was 19 - and the threat of having to live in a shelter again is what got him to agree to treatment a decade ago.

Since then, he has slowly reclaimed his life - with the four pillars of community, purpose, structure and (yes) treatment. If any one of these pillars should crumble...well, let's just hope that never happens. Because right now Ben has a life. As he recently said to me, "I finally like who I am right now. I have a life I'm proud of. And if meds have something to do with that, so be it."

…but not disaster, if we catch it in time!

Wahoo! Does he mean it? I can't be sure. He has said this before, right before he'd been placed in his own apartment five years ago and left to "manage his illness alone." The result was the eighth hospital stay, during which his "without meds" behaviors became uncharacteristically belligerent.

So we still will adhere to our process for treatment, simply because it is working. Ben deserves treatment - and he deserves to have it supervised and reinforced if that's what he needs. There are those who will argue that he has a right to "refuse treatment."  Well, I say he has a right to have a life. With treatment, that life is filled with family, friends, love, work, a social life, a chance to mature and make decisions for himself - and a baby niece whose face lights up when she sees her Uncle Ben.

Treatment is far from perfect, but it can work. Keep improving it, make it available, fund it, enforce it. So no family has to ever be afraid of someone they love. 

Thank You, John Oliver. And I apologize.

Wow. John Oliver just summed up the problems with our mental health system in 11 minutes and 54 seconds - with plenty of room for punchlines as well. I know - seems like something that isn't humorous. But this segment provides more respect for mental health issues than so many others I've seen. Well-placed humor can do that.

Watch it here:

His opening statement, like all the facts in this comedy-in-truth piece, is correct:

"It seems there is nothing like a mass shooting to suddenly spark political interest in mental health."

Guilty as charged. My last post was, yes, sparked by yet another act of violence that I suspected would eventually point back to an unaddressed mental health problem in the shooter (and lack of support for his family). After receiving 2 comments which were too extreme to approve, I almost deleted the post today. It seems to have sparked stigma and judgment instead of the empathy and constructive outrage I had hoped to inspire.  But I will let it remain in this thread, because while I myself may have jumped the gun on "judging" this shooter with expectations that attention should have been paid to his mental health way before a crisis, I also know that such judgment harms people like my son, who lives in fear that people will find out he has been diagnosed with schizophrenia. (for the record, his name and identifiable facts have been changed in the book and in my posts, with his permission to tell the story that way)

So let's be reminded of the following facts, in Rolling Stone's coverage of the segment:

"The aftermath of a mass shooting might actually be the worst time to talk about mental health," he argues. "Because, for the record, the vast majority of mentally ill people are non-violent. And the vast majority of gun violence is committed by non-mentally ill people." The host cites a February 2015 report by the American Journal of Public Health, which states that "fewer than 5 percent of the 120,000 gun-related killings … were perpetrated by people diagnosed with mental illness."

Yes. Let's not stigmatize those with mental health issues every time a crime like this occurs. But also, yes. Let's pay attention to our broken system - and fix it. Segments like John's, factual as well as (weird but wonderfully true) entertaining, point the way.

Chris Harper Mercer: A Preventable Tragedy?

Another merciless, senseless shooting, this time in Oregon. Another troubled shooter with three names. As details of the life of Chris Harper Mercer emerge on news outlets, I expect, sooner or later, to find out what often is uncovered: undiagnosed and/or untreated mental illness symptoms. Duh. And a family left trying to "handle it" alone. Duh, again. Been there - am there. Except we got some education and support so we could try to help our son. We are among the very lucky families. At the moment.

As mother to a young man who has been diagnosed, and is (reluctantly but consistently) in treatment for a mental illness (schizophrenia), my heart goes out not only to victims and their families, but also to the family of this latest shooter. His father, Ian Mercer, of Tarzana, California, told KTLA on Thursday night: "I am just as shocked as anybody at what happened today".

Once again, the system closed its eyes to the need for support and left a family alone to cope.

Chris Harper Mercer was also, according to a NY Times article, close to his mother, with whom he lived. She reportedly had asked neighbors to help her get her apartment exterminated for roaches that bothered her son, who was "dealing with some mental issues."  How else was she trying to help him? Or, like so many other stigmatized families with a "troubled" relative, did she just hope she could keep the situation quiet and keep things under control?

She obviously could not. Neither could Adam Lanza's mother, Nancy Lanza, in Newtown CT. Once your child is a legal adult, the very few rights you had as a guardian disappear completely. But the problem does not. And tragedy, as we have seen way too many times, can result. Though this kind of violence is NOT the norm for those with mental illness, it is the most publicized result of the neglect of our system toward the 1 in 4 families left to cope with mental illness alone.

When will we ever learn?

When will we pay attention to warning signs?

When will we open our eyes to the need for treatment, and put a system in place to help the families left to "figure it out" themselves?

We are one of those families.  For the past four years, Ben has lived with us, because the system failed to realistically help him stay in treatment and rebuild his life.  The minute he started to succeed, budget cuts took away services he supposedly "no longer needed." That is like stopping chemotherapy halfway through, with no follow-up.

We are Ben's family and we love him. So much so, that we're willing to let him "hate" us during the two most uncomfortable moments of the day: times to take medication that he does not believe he needs. We stay up late to supervise when he gets home from his job, often between 1 and 3 AM.  There are nights when I can barely stay awake, and cannot relax until the meds are safely swallowed and absorbed.

But it's worth it. The stability of consistent treatment has helped Ben to rebuild his life. He has a job, friends, and a car and credit card in his name (!). He is starting to feel like he has a life he's proud of. But he hates those two times a day...and I have no doubt that, were we not there, he would stop treatment immediately.  He has his reasons, one of which is he wants to take full credit for his "better decisions" lately. He does NOT want to hear that his good track record "seems to coincide" with times he takes his medications.

He melts down every so often, accuses us of controlling his life, of mistakenly labeling him "insane" (his word, never mine). He then says he wants to stop taking medication -with the best of intentions to keep succeeding, of course - but we have seen, eight times, what happens when treatment stops. It's not pretty. Hallucinations. Withdrawal. Resistance. Mania. Police. Ambulances. Sometimes handcuffs. Hospitals. Work, school, money, friends - all can be lost so quickly . So we let him hate us, twice a day.

Ben has never been violent - for that we are so grateful. He hates guns, and loves people. So, no, I don't fear he would become a shooter. But I do fear for his life, and his future. If we should stop managing his treatment (someday he might simply refuse, or we might be away, and - let's face it- parents do die eventually...) where would he go? How could he function? Would his "case management team" even have an idea what is going on? Would he get in his car and drive in a distracted state?

Every family dealing with mental illness lives on a tightrope, with an anvil suspended overhead ready to fall - because there IS NO SUPPORT.

We cannot close our eyes to the people who live with mental illness. We cannot sell them guns. We cannot deny them treatment - not just medical treatment, but services and support. We cannot play ostrich and "hope things get magically better."

According to a guest commentary, Treatment Advocacy Center, "The number of psychiatric beds in the US has been reduced in the last 50 years from about 650,000 to about 65,000—about equivalent to the number of mentally ill that wound up on the streets or in prison."

Or living with their frightened, hopeful, families. Attention must be paid.  

Sons with Schizophrenia: A Tale of Three Mothers

Three mothers with so much in common, we could form a club. Each raised one son and one daughter, through adolescence into young adulthood. Each loves her children with all her heart. And, sadly, each of our brilliant, happy, sweet sons began to change in their mid-teens, and were eventually diagnosed with schizophrenia. We have each written about our experiences, shared our stories so they might help others.

But our stories have taken three very different turns. Today, one of these mothers mourns the death of her son, who passed away in “individual housing” earlier this year. Another of us sits stoically in a courtroom as her son is being tried for shooting moviegoers in Aurora, Colorado. And I, the lucky one, get to hug my son as he heads off to work, in his car, filled with gas that he paid for himself. For today, yes, I am the lucky one.

Love matters…but it’s not enough

My heart goes out to the other mothers, even though I have never met them. I only know them through their writings, but I feel their struggles, their pain, their guilt, their love. Anyone who lives with mental illness in their family knows that we live life with crossed fingers, and we fight with all our might to make the right decisions.

And it is far from easy.

Laura Pogliano called herself “lucky”, too, sharing her story The Fortunate Mother: Caring for a Son with Schizophrenia in USA Today in 2014. In it, she “feels lucky that she's been able to hang in, lucky that Zac is not living in jail or under a bridge…even though ‘Twice a year, right in front of me, he disappears into psychosis, and there is very little left of who he is. Then medicine resurrects him for a few months, I have much of my child back, then he dies again.' “ 

Later, she struggled with whether or not to let Zac get his own apartment.  In a USA Today follow-up story, Laura says Zac had moved into an apartment near her home, and that she had tried to “protect her son without being overprotective.” Zac stopped communicating with her for a few days, and she had the same reaction as many parents who strive to allow independence with limits: “I asked myself, 'How much do I baby him? If he's with some friends, I don't want to butt in.' ''

Who hasn’t been there? I know I have. That balance between letting go and stepping in is a staple of parenting. In Laura’s case, the results were tragic: Zac was found dead in his apartment in January 2015. Her “luck” had run out…but the lack of respect and services for her family situation is certainly more to blame than luck.

Laura is devoting much of her time now to honoring Zac’s life with her advocacy. This did not have to happen. See her powerful piece called My Mentally Ill Son versus Your Son With Another Type of Illness.

Young Holmes Family

Holmes Family Today

Arlene Holmes is the mother of a man who is hated by many. Her son, “Jim” is known to us for only one thing : the day he opened fire in a crowded movie theater in Aurora, Colorado, killing 12 and wounding 70. James Eagan Holmes, before that day, was a neuroscience student, a camp counselor, a church goer, a class leader, a big brother. He was – and is – somebody’s son. And he had needed help for a long time.I don’t profess to understand how Arlene Holmes feels. I can only imagine the guilt, regret, isolation and grief – and surmise that these feelings began long before the “Batman incident”, when her son first began to show early behavior changes (including a suicide attempt at age 11). What I imagine to be the feelings behind the stoic expression of Arlene and her husband as they sit near their son during his trial comes from her self-published book of poetry When the Focus Shifts, her reaction to the shootings, and the arrest and trial of her son. She states that the proceeds are to be donated to medical and mental health services.

Is she a “monster”, who “raised a monster”? I doubt it. I suspect that she, like me and Laura, was just a woefully underprepared and unsupported parent.

She writes:

(01-08-2013) I can never forgive myself for not knowing that this would happen.

How could I have known?...

Forgive yourself…And then forgive the people who hate your guts and want you dead.

(02-01-2013) I had a good kid who never harmed anyone.

That changed; his brain changed.

(03-22-2013)

A memory of when he was in high school…we are hiking up a hill

I can’t keep up.

Jim stays behind to make sure I am okay.

Isn’t that empathy?

Arlene writes about sitting in Jim’s untouched childhood room, “because I need the memories and tangible evidence that he was a good person.” Could this have been me? Could it have been Laura?  Three mothers – three sons with schizophrenia.

What made the difference?

Is it love? I highly doubt it. These boys were all loved.

Is it the lack of family education and support? Shortage of attention paid to early diagnosis and treatment? Is it the fear of diagnosis, fed by stigma, fear, and paucity of realistic access to treatment that must be consistent to be effective? Answer: sadly, all of the above.

Or is it also just the randomness of things, the moments we missed when we look back and say, “I wish I had known?” To this I say: you can never know. You can guess. You can educate yourself. You can take whatever actions seem right, do what the mental health system “allows” you to do. But nothing is ever that clear where mental illness is concerned.

“Show me a prison, show me a jail
Show me a prisoner, man, whose face is growin' pale
And I'll show you a young man with many reasons why
And there but for fortune, may go you or I”
- Phil Ochs

Is it fortune? Really? According to a 2006 study, “An estimated 56 percent of state prisoners, 45 percent of federal prisoners, and 64 percent of jail inmates have a mental health problem.” So can we also blame a mental health system that is underfunded, shortsighted, and mired in legalities that prevent people with mental illness – and their concerned families - from getting the help they need?

I’m talking with George, a social worker who works in the prison system, about this. He says that, yes, many of his prison clients have schizophrenia. We agree that so many of those with unmanaged mental illness wind up instead either homeless or in prison, and that they’d have been better served by receiving treatment, as early and consistently as possible – but then George shocks me with his next statement. He says:

Of course, the majority of my guys are imprisoned for killing their parents.

This stops me in my tracks, knocks me right off my soapbox. There but for fortune…?I have often imagined how hard it would be if Ben were incarcerated (which almost happened), institutionalized (which also almost happened), or homeless (which did happen, in the past) – but the thought that he could kill us, or anyone, in the midst of psychosis has never crossed my mind. Ben is a gentle and sweet soul – has been since birth – and I’ve always felt that this has been our saving grace. But did Arlene Holmes think her son incapable of violence? Did Laura Pogliano think she was through the worst of it when Zac admitted he had schizophrenia and agreed to be interviewed by USA Today?

The truth is, I have no idea what Ben’s voices tell him when he is untreated . He has never admitted to even hearing voices, much less the words he hears, but if he stops taking medication the fact that he responds to this internal world is undeniably clear. We only hear and see Ben’s side of the “conversation” – he gestures, grimaces, talks – but what do the voices say to him? I hope we never know, We’ve made it our job to make sure he stays in treatment, keeping that internal world quiet enough so Ben can work, live and love in the external world. We have no “legal” right to do this, of course; it’s simply a house rule, and Ben follows it. We have set limits in our home and we enforce them. So far, so good.

These days, Ben has a job he excels at, a social life with friends and family, and interests like hiking, bowling, and college classes. He takes his medication twice daily, which we supervise. Not my favorite moments in the day, but worth it. Every day he asks for a “Mom hug”, and tells me he loves me. Lucky family. We know it. But we live life with crossed fingers. All we can do is our best to make sure we respect his illness enough to keep it managed.  And the rest…is out of our hands.

There but for fortune….and one hell of a continuous fight. For treatment, for research, for respect for the needs of those with mental illness, the right to have treatment and the right to a future.

Three mothers.

Three stories.

Three outcomes.

Countless other families that could have been saved – including those of who have lost loved ones – with early diagnosis, stigma-free treatment, understanding, better research, mental health support services.

When will we ever learn?