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.    

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. 

Noah's Schizophrenia: Review

Like many memoirs about a mother's experience with her son's schizophrenia, this rang true on so many levels. The love, the shock, the despair, the hope, the searching for support...all of us with loved ones struck by the brain illness called schizophrenia will nod our heads in solidarity - the club we never wanted to be in.

What sets this apart is how the author weaves information and resources into the story: read it to understand acronyms and issues such as AOT, CIT, NAMI, Board and Cares, homelessness, drug use, conservatorships, IMD, Clozapine....a primer for the vast education a family needs to cope and help.

For me, this may not have been the easiest read on this day when my own son's Court Hearing to apply for right to commit and right to medicate is happening in a few hours. I face the difficult decision, as does the author Kartar Diamond so many times in this story, of refusing to let me son move back in with us. Her son Noah cycled through so many forms of alternative housing...what will happen to mine?

In one terrifying and frustrating scene, she shares her thoughts as Noah's symptoms worsen: 

As a small boy, he made a Mother’s Day card that read, “Don’t ever die I love you so much.” Now, 25 years old, suffering from schizophrenia and fueled with crystal meth, he wants to “crush my skull” because I didn’t bring him ten dollars.

Minus the threats, we have been there. As for the threats? Well, you just never know. With treatment, Ben's sweet nature abounds. When he refuses meds? I don't know how long before the voices take over.

The author's son Noah is a talented musician (mine a promising writer, a grim reminder of what this illness steals from the world as well as from the person diagnosed with it and his/her family). This is not sugar-coated at all; it reveals the disparities in the mental health system through the frustrated eyes (and pocketbook) of one mother who loves her son with all her heart, but is left almost helpless by the illness and the system that is supposed to help. It also ends with some hope, and a look at what can happen when the system does work.

I can relate. You, I hope, will too. She searches for "the truth" throughout this book, and all of us hope and pray it can be found.

Partnering with Researchers for Brain Awareness Week 2018

"This Brain Awareness Week, we share Randye Kaye’s story – she is a mother of a son affected by schizophrenia. In her search for understanding and raising awareness of mental illness, Randye spoke with Dr Michael Sand, a Medic and Senior Clinical Program Leader CNS at Boehringer Ingelheim to discuss what is important for future brain research. They also shared insights into how they are personally connected to mental illness."

You can view the story here!

The Precarious Jenga Tower of Life with Mental Illness

My son's life is a never-ending game of Jenga, carefully constructed by us all and always in danger of toppling - as pieces are removed by too many players jugging too many variables and way too little foresight and funding.

This month has been challenging. Five years after Ben Behind His Voices was released, we are living inside a constructed existence composed almost entirely of Jenga blocks. Ben has climbed his way to full-time employment as a restaurant server, and has even earned kudos on Yelp.

Recently one of his friends, a young man struggling with mental illness issues and also transgender transition, was reported missing (he has since been found, thank goodness) and his family was frantic. She drove to our home to ask for Ben's help, any info he might share. In the course of our conversation, she revealed that her son had been prescribed medications for his anxiety and depression but had recently refused to take them - and soon after that disappeared. She told Ben that he was an "absolute inspiration" to her son because he takes his meds -  and has held a job he loves for over two years.

What she hadn't realized is this:

Sure, Ben takes his meds - but he still doesn't think he needs them. He is "compliant" because it's a house rule we enforce - by staying up til the wee hours of the morning (Ben helps close the restaurant 5 days a week) to supervise. Could he refuse? Sure. But we would then refuse to allow him to live with us.

I pray we never have to force this issue. We've done it before - it is risky and painful to all - and so Ben knows we mean what we say. But the whole "compliance" situation is a jenga block that always sticks out, just waiting to be pulled from the stack. It's right here on the foundation level. If that one goes, the whole thing topples over.

But even with that foundation intact, each day there are other pieces that hold his life precariously together. This week, four were pulled out --- and we hold our breath, as do so many families in similar circumstances, that the structure can still stand.

• One - Ben lost his Social Security Disability benefits (SSDI) this week. I know - he is working now, and so shouldn't "need" the funding, but he does. Even though he works, he still has a disability. Every day he lives with the threat of hospitalization, and the job loss that would almost certainly follow. His schizophrenia is currently being "managed", yes, but it's still very much there in the decisions he makes when not focused by his work shift. The large payments on his impulsively-leased new car, insurance premiums he now owes to hold onto Medicare, the costs of food and rent...Social Security was helping with those. But it has been pulled from the stack.

• Two - Ben has been supported by a care team - which now (because of funding cuts) has to discharge him from their client roster. He is "doing so well" that they want him transferred to private practice. Help! This rips the safety net right out from under us. Sure, he is doing well now - but what if.....?  It's terrifying to think we'll have nowhere to turn if Ben makes a wrong turn. Right now, the care team has it easy, as we generally handle medication supervision, transportation, doctor appointments, conservator duties, legal help etc. - but the safety net of a care team has been essential to help us when the mental health system (and the paperwork) gets overwhelming or confusing - which is ALL THE TIME.  I don't have the Social Work Masters degree to understand how the benefits work, and what we need to do when emergencies strike. NAMI Family-to-Family taught me a lot, but we can't know it all.

• Three - The restaurant where Ben has been employed for 2 1/2 years has just suddenly closed its doors! This place was not only his income, but also his source of pride, family, and a feeling of normalcy. I worry that the stress will be too much, not to mention the loss of income. What about his car? His life? What about OUR life, and our bank account? We can't afford the losses that keep coming. Ben had paid us rent, but that's gone now with the loss of SSDI. We cover his medicare premiums, his food....and yet we know how many families would be thrilled to have these "problems" -  a family member with schizophrenia who actually takes his meds (albeit reluctantly), has a job to lose, friends to help?

• Four - He had, after a decade on these medications, a white blood cell count that might force a change in meds. Please, no. Nothing else works, trust us. He has tried them all.

But still.

So that's four sticks pulled from the tower.  More threats always loom for families affected by mental illness.

What if......:

• He can't find another job?

• Medical insurance suddenly refuses to cover the only meds that help him?

• He loses his car?

• He gets anxious and upset by the changes and decides to disappear?

• His symptoms act up due to the stress and his potential employers see it? His friends see it? He has been dropped socially many times before after one "weirdness" display.

Help Prevent This, Please!

The one in four families living with mental illness deal daily with their own Jenga towers. We are never "out of the woods." We work every day to shore up that tower and help our loved ones have a life. We and our loved ones needs support, education, funding, research, and a chance to continue to improve. Please keep that coming. We can't handle the short shrift anymore, even if it looks like we can. Bravery often has fear underneath it. Mental illness deserves respect, funding, and a good - and constant - dose of the reality of how important prevention is.

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.

Encouraging Treatment: Loving Parent? or Cruel Dictator?

(repurposed from my final blogpost on "Mental Illness in the Family" on HealthyPlace.com)

Two things happened last month that stirred me to revisit an often-examined question:

Am I too involved in my son’s life? Have I “stolen his manhood and his rights” by insisting on treatment?

One reminder came in the form of a reader’s book review on Amazon.com forBen Behind His Voices, calling it a “Testament to Abuse of Power and Parental Authority,” the only one-star review in a sea of 5-star praise and gratitude. Clearly, a man with an agenda, so I didn’t take it too personally, but this is not the first time I’ve been called an over-involved parent. On the other hand, I’ve also been criticized by others  for not “stopping” Ben from dropping out of high school, for “allowing” my son a period of homelessness in Idaho and “letting him fail” when he gained and then lost five different jobs after he returned.

And then there is — the question of “forcing” Ben to take medications to help restore balance to his brain. The second reminder came from a voice student of mine, who shared how well his son with schizophrenia was doing without meds, having “learned to recognize the voices and deal with them” instead. Of course, that’s wonderful. Some people, I understand, can do that — but often it takes all of their energy just to keep those voices at bay. And then there are those, like Be, who cannot, in a million years, manage the full-time job of keeping his inner thoughts (or voices, or whatever they are) quiet enough so that he can attend to the outside world. Elyn Saks clearly outlines her unsuccessful attempts to get off meds in her memoir The Center Cannot Hold; in our family, we have seen, all too frighteningly, what Ben’s life becomes when he doesn’t take his medication — wildly wandering, constantly mumbling, lost in his own world, relentlessly pacing, capable of lashing out. He is lost to us then and, I believe, to himself.

In the Name of Love. (mask created by Young Adult with Schizophrenia)

But with the treatment we “insist upon?” He is working at a job he loves, is finally having a social life with some friends who enjoy his company, is studying at college part-time, and enjoys riding his bicycle, taking walks, and even cooking. He lives with us now — which is the parenting contract lasting a lot longer than we’d ever planned. But he has a life. He tells us how happy he is. But he does not ever credit the medication for his success. He needs to feel he is “totally responsible” — which he is, of course. His ambition, personality, charm, intelligence are what has helped him to succeed. But without the treatment, his illness clouds those wonderful qualities. Treatment has allowed him to shine through. Ben, no longer “behind” his voices all the time.

We applaud his independence, and hope he has a car and home of his own someday.  We’d like our lives back, too, believe me. But not at the expense of Ben’s life. And right now, being part of the family is something he loves. He had his own apartment once, a recipe for disaster though we’d had high hopes.

So, dictator Mom makes sure he takes his meds and does his chores. We also provide rides to and from work when we can — which is most of the time (one of the reasons I often work from home). If we can’t, we trust him to figure it out.  We are parenting the way many parent adolescents: let the rope out, carefully, a step at a time.

Some, including the reader reviewer above, advocate for “patient’s rights” to refuse treatment. We advocate for Ben’s right to have a life, to rebuild his future. He is happy, adores his job, participates in activities with family and friends -  and it can all fall apart if he stops treatment. We have seen that happen at least ten times in the past, and are happy to be called “dictators” if it means that Ben will be in the world, able to have a life.

It's his right.

How Families Slip to the End of the Rope: Mental Health System Cracks

As we approach the third Anniversary of the publication of Ben Behind His Voices, the big question remains. How would Ben be doing without family support? Have there been any improvements in the system that failed my son, and our family, so many times in the past?

Want an update? If you missed it in an earlier post, here is the progress since the last page of the book (where Ben is still living in a group home, back in college classes, and doing some volunteer work). Many of the details are outlined in earlier posts (check category "How is Ben Doing Now?"), but here is the current picture, about which I am so grateful:

• Ben continues to take college courses, 6 credits at a time.

• He lives at home with us, and pays rent. (this after a disastrous housing change from the group home)

• He has a JOB! He is a waiter in a chain restaurant, and absolutely loves it.  He is often in the top three for tip-earning, and has often been asked to stay and supervise the closing process. Yes, amazing.

• Although he had a roommate here for awhile, that ended badly (with the roommate's addiction and connected behaviors) - but Ben has managed to salvage the start of an actual social life now. One step at a time.

Help Us before we Get Here!

Still. All of this progress can go away in record time - and often has, in the past - if something interferes with the meds he takes.

Families like ours walk a tightrope, struggling to balance all the elements of progress when someone we love has a "neural difference." And we cannot do it alone.  So it really pisses me off when our competence creates laissez-faire among the people supposed to be our support.

1. Last Friday, I noticed we were almost out of Medication A (Ben takes 3 things). So I called the pharmacy to order more.

2.They could not place the order because they had not received paperwork from the case management team. So I called his case manager, and also sent an e-mail. No answer.

3. Had to wait until Monday for further action. (No one works on weekends). Didn't think it would be an issue.

4. Monday: Called pharmacy again, still no paperwork, which was supposed to have been faxed from the Lab ten days before. Went to the Lab in person. Though they recognized Ben's face and confirmed he had been there recently for bloodwork, this visit somehow was "not in their system". So we did the blood work again, just in case. Thank goodness we did.

5. Meanwhile, we are now dangerously low on Med A. If Ben doesn't have a full dose of it, he will exhibit a  serious behavior change at work tomorrow, jeopardizing everything he has worked so hard to achieve.

6. I call his case manager again. Turns out he is on vacation (no one had told me, and there had been no out-of-the office email reply). Voice message says call the main number, where they tell me to talk to the nurse. I do. He says nothing can be done without the paperwork, which I had assumed had been faxed, and had counted on the case management team to notice if that hadn't been done. Back to the front desk/main number. They then tell me to call another case manager covering for Ben's, but that she is out to lunch. But I can leave a voice mail message.

7. I call the second case manager, leave a message. Her voice mail gives the wrong date and has no mention of not being in the office that day.

8. I wait three hours. No call-back. So I call the main number again. "Oh, didn't they tell you? She's on vacation." No they did not.

9. I call the nurse again. He spends ten minutes telling me why he can't do anything to help me because the NEW paperwork (from this morning's blood test) is "Pending", and the old paperwork had never been faxed. I begin to beg, plead, then finally yell. Why am I supposed to do everything, keep track of everything, supervise the meds, drive my son everywhere - and yet the one or two things I ask his "case management team" to help with - keep track of the paperwork, including making sure his benefits are intact and meds are on track) slip through the cracks? When they are being paid to "manage" his case?

10. Finally, in desperation, I call the pharmacy, which is about to close. They, amazingly, offer to help by giving me enough of the meds to get us through until the paperwork in processed the next day. 

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

Crisis averted. But - if not for an empathetic pharmacist - Ben could have severely damaged his reputation at work. And the fallout from that would truly have been devastating to him.

So - case managers - if you are lucky enough to have a family helping in the recovery process (and most of us want to, if we just get enough information, support, and resources) - PLEASE, at the very least:

• Let us know if you are going on vacation, and who is covering our case

• Have the front desk be aware of days off and what else a family can do

• Notice if paperwork is late. Call the family, and your client.

• Hey - please don't wait for a crisis. Call your client once in a while and find out how they are or if they need anything.

We may seem like the "easy case"  because families do a lot of the work - but believe me, we need your support.

Do we have to be a squeaky wheel to get it?

Does there have to be a crisis to get some help? Some answers?

Listen, Ben is my son and I love him. Like any loving parent, show me the way to help and I'll do it. Ditto my husband, my daughter, my son-in-law. But the question for all of us - not just our family, but any others dealing with a family member with special needs: What would happen if we couldn't be here? What will happen when we are gone?

Families cannot do it alone.  The mental health system is complicated, full of red tape, hard to navigate, and full of holes and cracks. Don't let us slip through to the end of our ropes.

Thank you. 

Families: Has the mental health system driven you to the end of your rope? How? Feel free to comment.

Schizophrenia and the Family: In a Nutshell?

It occurs to me that some new readers of this blog may not really know the backstory that brought us here.

I've just returned from Warsaw, where I was honored to have the chance to speak to a global audience about our family experience with schizophrenia and recovery in my son Ben - and to have shared the stage (well, one at a time...) with the wonderful Pete Earley, author of Crazy: A Father's Search Through America's Mental Health Madness.

Pete told his story, and I told mine. The challenge was that, while I usually speak for at least a half hour, I had 17 minutes to sum up the last 15 years of chaos, discovery, and hope.  Not easy! But it did encourage participants to pick up the book for the whole story.So, for newbies to this site, here is a "nutshell" version of our path so far. I wrote this to send to NAMI, for possible media interest.

So - the "movie trailer" version of where we've been:

Fortunately, my son Ben (diagnosed with schizophrenia)  is currently doing well - but it has been a long road, and we almost lost him several times - so far. Every time that services are cut, or his needs misinterpreted, we run that risk again. Like many families, we have taken on much of his care ourselves - to make sure things continue to go as smoothly as possible.

 Our story? In a nutshell: 

• Bright, promising childhood - Ben was (is) bright, personable, loving

• Mid-teens: changes begin, become more frightening with the years - isolation, high school dropout, paranoia, a period of homelessness in Idaho

• Finally: diagnosis at age 20 - and I had discovered NAMI, which enabled me to (at last) be an educated partner in Ben's treatment and recovery...when "allowed" to by the system

• A long, dangerous wait for Ben to be "ill enough" to get admitted to a hospital - as if wandering through streets, near-incarceration, and strange visions were not enough

• Five hospitalizations in one year - 2003 -as we awaited the right meds, and then "permission" to be involved in his recovery

• At last - we "declared him homeless" so he could receive some services. Eight years in a group home - recovery progressed, but two relapses as staff ignored family information about Ben's med compliance

• Then, by 2011, improvement included part-time college success, a part-time job...and then a resulting cut in services as Ben was "doing so well".  Sent to his own apartment with extremely reduced support services. Result? Relapse, including police at his door, near loss of his job (thankfully they saw past the stigma), and 7 more weeks of hospitalization as he refused treatment - and was allowed to.

• Partnership finally resulted in stabilization - and Ben now lives with us. He is back to part-time work and college success, and is now enjoying a social life. But without the medication, he relapses within 2 days. We supervise carefully, twice a day.

Message? Recovery IS possible - with four cornerstones of:

• Medical Treatment

• Purpose

• Structure

• Community/Love

The cost of cutting services, and of cutting out the family support system, is: disaster. Families are helpful - IF they receive education and support. NAMI rocks - especially

Family-to-Family

!

Update: Two More Years into Schizophrenia Journey

snow…like the symptoms that can coat Ben’s thoughts

Yesterday I was alone with Ben all day.  Huge snowstorm, hubby away in California, daughter and her husband in their own apartment, driveway covered with a foot of snow.  Ten years ago this would have been a recipe for all sorts of disaster: frustration, loneliness, trepidation. Instead, thanks to treatment which includes medication as well as the other cornerstones of recovery (community, purpose, structure), I was actually glad to have Ben's company.  Here is what happened:

• Ben helped me shovel the driveway - I mean really helped, as in he did 75% of the work.

• Ben cooked us a delicious homemade pizza for dinner.

• We watched an animated movie - well, parts of it - during the required "watchful time" after he takes his meds.

Any parent of someone with schizophrenia will tell you that this is a day to be grateful for - and I am, believe me. No, life isn't perfect, and I still wish for the magic wand (or, more to the point, better research and treatment options), but still I know a good day when we see one.

I'm also thrilled that the book still reaches people, two+ years after publication. Although there have been a few changes in our situation since then (two more relapses, a disastrous foray into "independent living" for Ben resulting in our current living situation where he is at home with us, -with a roommate to boot-, and both a part-time job and more college credits earned), the story of our "journey from chaos to hope" remains relevant- at least according to the readers who have written to me. I am so grateful for the feedback, and the chance to share that continues with each reader (or listener to the audiobook).

Truly honored and grateful...all of a sudden, three new 5-star reviews for Ben Behind his Voices:

1 -"I will probably be listening to the CD over and over again for many years. Gives me comfort and courage to deal with my family member. Thank you so much Randye"
2 -"As a person with schizophrenia, I have never seen the journey through mental illness from the viewpoint of a parent. This book made me think, laugh, cry, and many other emotions. I related in many ways to Ben and saw my own mother in Randye. More people, in varying situations, need to read this eye-opening book."
3- "I am so grateful to the author who shares her story to educate and to enlighten those of us who are taking our first steps out of the chaos"

also came across this one, though it was in the form of a comment on another blog, and I can't find the author's page...(ah, Google Alerts)...

"Ben Behind His Voices is surely an inspirational tale a few family’s encounter with schizophrenia. The main target of Randye Kaye’s book is on her son Ben, who struggled for lots of years with psychological well being and compound abuse matters until finally he was as a final point the right way identified with paranoid schizophrenia. Kaye leads her visitors with the family’s very difficult activities using this ailment and their journey toward restoration and acceptance. This book may be a good source for people with schizophrenia and their families. In addition, it serves as the formidable reminder to psychological well being experts to treat men and women influenced with all the ailment with dignity and compassion."

You have truly made my day, readers. THANKS!

"Socialization Over Isolation": Jani, Ben and Community

I am a firm believer in the possibility of Recovery in Mental Illness.

Does "recovery" mean "cure"? How I wish it did - but, at the present time, it means management of symptoms, and it means rebuilding  - of one's life, and also of neural pathways.

I have watched and guided my son Ben through a decade of recovery - the ups and downs, the crises and the careful restoration afterwards.  What this has taught us is that there are four cornerstones to the foundation of the recovery process:

• Medical Treatment (whatever that means for each individual)

• Structure

• Purpose, and

• Community. Love.

Since the publication of Ben Behind His Voices two years ago, there have been three additional steps in Ben's recovery process. One is that he now is employed, and has been for over two years. I've written about this in past posts if you want to know more about that (but it has strengthened the Purpose and Structure cornerstones). The second is that he now rents a room from us, his family. After eight years in a group home and then system failure (also a subject of past posts), home is the best place for him right now, as we continue to hold onto support systems for case management and the path to greater independence for Ben in the future. This experience has also added strength to the Medical Treatment (we supervise meds) and Community/Love corners.

The third change is the one that has also been a surprising boost to that cornerstone of Community. Ben's life now includes friends - including one that currently also rents a room from us, someone Ben met at school. This friendship had brought out a lot in Ben that seemed limited before: talking about relationships, taking bike rides through the woods, hiking, playing card games and video games that are not solitary.  For the first time in over a decade, I hear the sounds of  laughter, cheers, and cars in the driveway as other friends come over to hang out. And, yes, at last, with some of these friends, Ben can say "I'll be right back. Just gotta take my meds with my Mom." A miracle.

Wow. Socialization over Isolation. Yes, please.

The Jani Foundation is championing this cause by planning events for children with SED (serious emotional disturbances) to relate to each other - to provide community where they don't have to feel isolated. (Jani is the subject of the book January First (written by her father, Michael Schofield), and the follow-up airing of "Born Schizophrenic". They have created this t-shirt which echoed my feelings about Ben's recovery. Socialization, especially in places where you don't have to always feel "different", is vital to the process. I learned this in 2001, when I was allowed to attend a meeting of Schizophrenics Anonymous.  This excerpt from Ben Behind His Voices tells the story: 

"I once attended, in 2001, a meeting of Schizophrenics Anonymous. This group is based on principles similar to the twelve steps of Alcoholics Anonymous. After a lengthy conversation with Charlie, the founder of the local chapter, I was granted permission by the group to sit in. The week I went, there were about seven or eight people attending, in various stages of recovery. They asked me to share my perspective as the mother of someone with schizophrenia, and they spoke of their own paths toward recovery. Afterward, we all went out for pizza—because, as Charlie told me with a smile, “We need to practice socializing, you know.” They got the joke. “Besides, the pizza’s only two dollars a slice,” said Bill, another group member. I loved these people. They even joked about their past. They shared a genuine laugh over things they had once believed about themselves: that they had “known everything,” that they were meant to be elected president. This was the first time I had ever heard these stories told with any humor inside the tragedy. It felt like the ultimate acceptance, being able to laugh with each other about it. They had found community, and they had found laughter."

The feeling of community can also happen in Clubhouses,  programs where members are given purpose, and not just a "place to go". People with mental illness, like all of us, have times where they need to be alone and regroup. But too many are isolated too often - as are their families. I have spoken with Jani's parents, and even though we have never met, we share a bond. So do Jani and Ben. They just may not know it yet.

NAMI: How Strong Can an Affiliate Be?

The answer: Very Strong.

NAMI can make a tremendous difference, on levels from personal to political, and ranging from local to national.  I have felt it as a Family-to-Family participant, teacher and trainer; I have, I hope, nurtured it as a NAMI National Convention Presenter, and as a writer.

And, as a speaker and broadcaster, I've had the honor and privilege to see NAMI in action, in so many ways.  As a family member, I know that NAMI helped me to:

• learn about and accept my son's illness

• know that I was not alone, and

• find ways to turn our grief into advocacy and action.

Nowadays, NAMI serves and can represent those who are living with mental illness as well. Some call those affected by mental illness "consumers", others say "clients", or "patients", or "individuals"...and the debate on the right term may go on.  However, the need for respect, individual treatment, understanding and hope remains the much more important issue than finding the right word.

Keynote on Mental Illness: From Chaos to Hope

Last week, I got to know NAMI Summit County, Ohio, when I served as the keynote speaker for their 27th Annual Anniversary Celebration Dinner/Auction, themed "From Chaos to Hope." So close to the subtitle of Ben Behind his Voices...it had to be fate.

When I get the chance to speak to groups of those who care about mental illness issues as much as I do, I always feel that I learn more than I teach; once again, in Summit County, this proved to be the case.

The audience was filled not only with those affected by mental illness in themselves or a loved one, but also with Crisis Intervention Team (CIT) trainer officers, judges, lawyers, healthcare and social work professionals , politicians, and other friends. I learned about the courage, resilience, and actions of so many, by listening to the recipients of the evening's Awards: Journey of Hope, Community Recognition, Lifetime Achievement, Heroes Make a Difference.

I met people who had lost a loved one to mental illness and turned their grief into advocacy; I met those living with mental illness who now mentor others in the same situation; I met the leaders of this affiliate, including of course Mel and Helen Reedy, who have spearheaded so many wonderful programs that show what NAMI can do when there is a vision, and it's properly supported.

NAMI Educational and Support Programs, and Beyond

NAMI Summit County, in addition to providing the Educational and Advocacy services we often associate with a NAMI Affiliate (support groups, speaker series, Family-to-Family, Basics,  and other educational programs), offers assistance to those who are striving to cope with a brain disorder. These programs include:

Housewarming

Housewarming provides new, basic household items to assist persons who can now live independently. Since the program’s inception, over 1,000 requests were filled (207 in 2011, alone), aiding in the transition to leading and independent life.

Needy Soles

Needy Soles footwear provides shoes, socks and other footwear to those who cannot afford to buy their own. 664 pairs of shoes were provided in 2011 via vouchers provided through our local Community Support Services organization.

Hair Care Program

Limited income can mean sacrificing basic personal care. A trip to the barber shop or salon promotes self-confidence while providing a basic need. Clients may obtain a voucher redeemable at the Akron Barber College. 608 haircuts were provided in 2011.

Creative Kids

A scholarship program offering the opportunity for kids in Summit County with Mental Health issues to participate in extracurricular activities such as art, drama, martial arts, music and more. 

Recovery in mental illness is a community process, and I am grateful to NAMI Summit County for showing me yet another example of what can be done when someone has a vision, and many work together to make it come true. That, indeed, is the path from Chaos to Hope. No one does it alone.

Thank you!

NAMI in the Community: Lifeline for So Many

This video, created by Barmont Productions for NAMI in Connecticut, shows in seven short minutes a smattering of some of the ways NAMI has made a difference in the lives of people living with mental illness, and their families and friends. In it, you will hear a small taste of why Ben Behind His Voices is dedicated in part to NAMI's wonderful work: education, advocacy, empathy and more.

As the host of this piece, I got to interview so many amazing people, and can only wish that the hours of footage we got might someday get re-edited into a documentary of 30 or 60 minutes, to pay homage to the many stories courage and love that I heard that day. Meanwhile - watch and enjoy!

http://www.youtube.com/v/zgPN7vnOd-Y

Unemployment: Rocking the Recovery Boat

Well, it has happened:  Ben has been laid off from his job.  When I picked him up yesterday, he had just emerged from the "meeting" some of us know all too well. We love you. We think you are awesome. We just have to lay off some people because of the season, and unfortunately you are one of them.

Oh, Ben put on a brave face.  He immediately told me the "good news" that the layoff had nothing to do with him, that they will give him a great recommendation...but I could see it. He hasn't genuinely smiled since he got the news yesterday.

And that hurts. For both of us.

employment supports recovery

This job had been Ben's first since his 2003 hospitalizations - and for 18 months he has been proud to have an answer when someone asks, "and what do you do?"  Even though he is also a college student, after a year and a half of also defining himself as a person with a job, it won't feel like enough to be in school.

This unemployment blow is painful for anyone - I know, and maybe you do too. Still, even with the current economy, a number of us will feel fairly confident we will be hired again, somewhere, to do something.

But we don't have to worry about whether we should disclose a history of mental illness, of several hospital stays in our past.

Ben's current (soon-to-be-previous) employer had been great about that. Even after a relapse in 2011, Ben had been welcomed back to work - and relieved that the "secret" was out, and hadn't made a difference. I blogged and spoke publicly about this wonderful employer - for, by accepting Ben's diagnosis and respecting his strengths, they not only gave him back an important part of his self-esteem; they also got, for themselves, a reliable, trained, enthusiastic employee and team member who always showed up, on time, and worked hard.

Let's hope (and, yeas, pray, why not?) that this particular history can repeat itself. Ben needs a new job. When he gets it, we'll look back and see this had been a mere glitch.

But, right now, it feels like a huge weight. Uncertainty can do that - and stigma is suddenly springing anew after having spared us for a time. And we need to be patient, optimistic, and hopeful.  Maybe Ben  can land a job on his own - maybe he'll need supported employment, a job coach, volunteer work. He - and we - will do everything we can.

I want to see the light come back into Ben's eyes.  Hire him - he's worth it.

Living, and Sharing, with Mental Illness

Sharing Can Shape Our Lives

Before Ben Had a Job, He Took an Art Class and Made These Beads for Me

"For what we are, we are by sharing...and it is by sharing that we move toward the light." These words come from my temple's prayerbook for the Jewish New Year, and they never fail to re-ignite my sense of purpose each year.

Some seem to need this sense of community more than others, perhaps, but the fact is: we are all on this earth together. All of us. Healthy, or living with an illness or disability. Young, old, in between. Introverts and extroverts. Men, women. Different backgrounds, families, sexual orientations, strengths, challenges.

And what we are, what we become, the mark we leave on this world someday - it's a journey made meaningful by the sharing. And for that, we need each other.

How Stigma and Self-Stigma Can Lead to Isolation Instead

I recently participated in a wonderful panel called "Self-Stigma Solutions", alongside three people who live not only with mental illness but also with the stigma that can come along for the ride - both external and internal. Each person shared how they were either told, or told themselves:

• "your life is over"

• "you'll never amount to anything now"

• "you'll never have friends"

• "you may as well just give up"

Well - these people did not give up. They were down, but came back up. They not only refused to believe the stigma, they learned to change the messages they were giving themselves.  Yes, even with mental illness and all the stigma that comes with it, sharing is possible. One of my fellow panelists is now a lawyer, one a therapist, one a counselor - and all share their stories to help others living with mental illness, and their families. Thank you.

As for Ben, he spent years feeling unemployable - which wasn't easy. How do you answer when people say, "and what do you do?", when it's all you can do to stay out of the hospital? Slowly, though, he began to build upon the sharing he was doing: chores at his group home, a commitment to "Anonymous" meetings, volunteer work, helping us with household chores when visiting. He needed to share, to feel needed. And, eventually, he not only returned to college- he also has been employed part-time for almost 18 months. Ben has a bigger playing field, and a clearer structure, for sharing - and it has added to his recovery in so many ways.

Steps Away from Self-Stigma, and Toward Sharing

Three Steps That Can Help Erase the Negative Messages:
1 - Consider the Source of Negative Messages (they may be ignorant of the facts)
2 - Hang On to the Positives (past success, others who believe in you)
3 - Replacement Messages (e.g. eliminate the word "just" or "only" when you describe what you do)

Yes, this takes patience. Yes, it takes rewording your doubts until they look like problems to be solved instead of obstacles that prevent.  Yes, it takes work, and time. But each of them now share their lives, as does my son Ben.

Share Your Light

However we find community - a group home, a clubhouse, volunteer work, a meeting, your family - we each have something to share. And, by sharing, we let our own lights shine as we move toward the greater light we all create together.

See the person, not the symptoms.
See possibility and promise. It's there, with treatment, respect, patience, community, and hope.

Beyond Hope, to Promise: Treatment Works

For the first time in years, Ben has spoken to me about goals - and he actually has some, that he is willing to share with me.

When you have a goal, it can be risky to say it out loud. What if you fail? What if your dreams don't come true?

Treatment, the Foundation for Progress

For so long, Ben has been busy getting his life back to where it might have been had his progress not been interrupted by psychosis, hospitalizations, and regrouping. Step by small step, he has returned to college part-time, and recently celebrated a full year of part-time employment. But we have not dared ask, "where will this all lead?" or "What are your plans when you get your degree?". We didn't dare. It has been enough, the reality of these first steps. We tend to stay focused on today.

But Ben must be gaining confidence, as he now talks about wanting to "give back to the world" - as a teacher, perhaps, or an author. Will he get there? He just might. But, not all overwhelming goals, I am encouraging him to take one step toward each one and re-assess as the view gets closer.

But none of this would be possible without the treatment he is receiving for his schizophrenia. None of it. Without treatment, he would most likely be homeless, in jail, in a nursing home, or - let's just say it - no longer alive. Now, with treatment (medical, and also emotional and structural),  we have hope, and have taken one more small step:  his life also has promise.

Treatment is too often denied, not funded, not mandated - and that is a shame. Watch this video from the Treatment Advocacy Center about how Treatment Makes a Difference. Because it does. And we must keep fighting for it.

Schizophrenia, James Holmes, and Hindsight

I think the psychiatry career of  Dr. Lynne Fenton may be over.

Worse than that, she must be questioning whether she could have done anything to prevent the "Batman shootings" in Aurora that killed 12, and wounded many others.

James Holmes: Schizophrenia?

So it leaks out that shooter James Holmes has been in "treatment" for schizophrenia. Big Duh. It was only a matter of time before that was revealed, sadly.

The question, though, is this: what kind of "treatment" was he getting?

Holmes in court

According to this PBS Report, and interview with CAROL LEONNIG,  of The Washington Post

"(New information) shows that James Holmes, the lead and only suspect in this shooting rampage in Aurora, Colo., was seeing a psychotherapist or psychiatrist in his university where he was a graduate student. She was a very senior psychotherapy director, basically the medical director for the outpatient clinic for mental health treatment for students.

And she was seeing him for some time before this tragic event...Lynne Fenton is the doctor in the case. Her specialty and what she has been mostly researching is schizophrenia."

What has yet to be revealed is whether or not Holmes was taking medication for his schizophrenia, and whether he should have been committed to a hospital stay - whether he "wanted to" or not - if there were any signs of this possibility of violence.

Could Treatment Have Prevented the Tragedy?

This leads us to the issue of "Assisted Outpatient Treatment" well-covered by the Treatment Advocacy Center - so I will say no more about that in this post.

But there is also the issue of James Holmes' family life.

Grief in Aurora

There are those who will point to his parents as the "cause" of his actions - yes, still. But I know all too well how the best parents can feel powerless in the face of schizophrenia - especially in the absence of support and education.

The Grief of Countless Families

Check out this Open letter  "To the parents of James Holmes: Our son has schizophrenia; we know how hard it can be" . In it, the family expresses first-hand empathy for the confusion and chaos that schizophrenia can bring to a family.

and this was my response (among many other comments)

Dear Margaret - and family - Thank you for this empathetic, beautifully written open letter. There will be those who do not believe your point of view; perhaps, before my own son Ben developed schizophrenia, I might have been one of them.

But no longer.

Ben is 30, and we have been through the same confusion, shock, grief, and anger as you. Eight hospitalizations later, a few of them as relapse during the recovery period that began when Ben's meds began to restore his brain at last (not completely, of course, but enough to allow a slow thaw from his "frozen in time" state), we are grateful for every small step Ben takes to find a new normal for his life.

He has a job, goes to school and does well, and can - at last - take family trips with us with little fear that his behaviors will scare flight attendants.

It has been a long road, and we still monitor Ben's medications - because in two days without them he will wind up back in relapse. I wish he didn't need them - and perhaps, as he ages, this may change if he is carefully monitored - but right now he absolutely needs this treatment - medication, support, structure, community, purpose and love.

Perhaps if James Holmes had had treatment that works - involuntary, if necessary - this could have been prevented.

My heart goes out to you, and all affected by this senseless tragedy - including the Holmes family, and even James himself.

We are lucky, perhaps, to have Ben back in our lives in such a positive way - but I know that we were helped immeasurably by education (especially the Family-to-Family program at NAMI, and even the website communities like HealthyPlace that provide info and perspective) and by the stories of others - which is why we wrote our memoir, Ben Behind His Voices (which included some resources that saved our family) -Thank you for sharing your story and perspective. Perhaps it, too, will make a difference.

best,
Randye

Book Tour Continues: Trains, Planes, Automobiles

Catching a train to Boston today, then a drive to Marlborough, Massachusetts to participate in the Parent / Professional Advocacy League (PPAL) 2nd Annual Conference & Celebration as keynote speaker, then a car to Logan Intl airport and a plane to Los Angeles for a US Psych Congress regional event. Presenting about partnering for best recovery outcomes in mental illness by sharing our story as told in the book - and in the year since its publication.

After a book-signing, it's back on the plane home to Ben and the rest of the family. After one day together, I drive back to the Boston area to speak with pharmaceutical reps about how more medication options can keep hope alive. Then home, then back to the airport Wednesday - this time to Seattle, to present with Susan Inman, author of After Her Brain Broke, at the NAMI National Convention.

So many are working so hard to increase understanding, reduce stigma, foster respect, advocate for the right to mental illness treatment and better research in the field.  I am so grateful for the opportunities to be one of them. And grateful that the rest of my family is here for Ben, as I travel to hopefully inspire others to become part of recovery in any way they can.