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”

Out of the Hospital, Not Out of the Woods

It has been almost four weeks since I picked Ben up, curbside delivery (not allowed to enter the unit due to Covid) from his over-five-month stay in a “behavioral health center” (AKA psychiatric hospital). He was so full of hope, the day so full of promise - but we family members know to enjoy the moment, and prepare for a fall.

Man, I hate to be right about this. But I knew  - I knew - he was on the wrong medication, and it was only a matter of time.

Timetable of deterioration:

(first few days covered in more detail in the earlier post):

It doesn’t take long to lose ground

Thursday, Feb 4th - pickup, home to pack, delivery to new housing I’ll call B Home (very very grateful for that arrangement, don’t get me wrong). Ben seems excited and open to his new life.

Friday, Feb 5th - I drop off a few items he forgot, and already Ben seems off. He’s on a time-release injection of Haldol, and wasn’t kept in hospital long enough to observe how to time the next needed dose.I call to inform the psychiatrist via Ben’s case manager (who can ever get the actual doctor on the phone?) and am told he’ll get back to us on Monday. That’s three more days that Ben can deteriorate. 

Monday, Feb. 8th - the doctor has done nothing. No oral boosters prescribed, no change in the next injection date. Ben seems not much worse, which is good, I guess - but he is still not good. Families know. 

Thursday Feb 11th - I drop off a few shirts to Ben at B Home. He holds it together enough to talk to me through the car window.

Good news: he is wearing a mask. 

Bad news: he has gone on a shopping spree for hoodies. He has about 60 hoodies already, folded neatly (by me, while he was hospitalized) on a shelf in his old room.  

Man, I hate to be right about this. But I knew  - I knew - he was on the wrong medication, and it was only a matter of time.

He is stable (ish), but it’s like the nine years he spent getting off Disability and working up to full-time employment have been erased completely, like an extended version of the plot of Groundhog Day. 

We still have not heard a peep from his psychiatrist.

Feb 15-19 - I am so grateful that Ben is in B Home, and not with us. I think my heart would break every day seeing him like this. Texting and phone class, even facetime, are helpful. He’s pretty good on the phone.  

I do have a long conversation with the B Home Social Worker, who seems caring and informed. She actually listens to me as I share Ben’s medical and work history. She is amazed that he used to work full time. I’m sure she can’t see that possibility in him, the way he is now.

Meanwhile, the money questions pile up. Did Ben have Social Security reinstated? I’ve been working on this since October.

I speak to Social Security, to DSS, to his benefits manager, to the residence staff….and everywhere there is a different story. 

Ben lost medical coverage...no, wait, maybe he has it.

Who will pay his rent? 

Are his medications covered? Yes, they are. No, wait, they aren't. 

One system says yes, the other hasn’t gotten the memo. 

This is a SNAFU paperwork nightmare. 

I am told that if Ben weren’t on the “fast track” these decisions would take two years. Two years! 

Feb.20-24.

A new wrinkle.

Ben’s case management team is suddenly being disbanded. He has been within them for 18 years.

Now, a whole new team to train. I hope they’ll hear our story. I hope they are better.

I hope the doctor is more attentive, knowledgeable, helpful, caring. 

I am wishing for a lot. As ever.

Meanwhile, Ben’s “rent” has not been paid because no one knows where his benefits stand. I write out a check for almost $1200 and mail it in to B Home. I cannot afford this. But of course I pay the bill.

And, Ben is failing. The B Home staff tells me he is twitching, gesturing with his hands, mumbling, eyes darting off to the side. Also, He’s isolating in his room whenever he can, listening to his music. 

This, my son who waited on a full station of tables just a year ago and kept it all straight and came home full of joy about the social interactions.

I know these signs. The voices are getting louder. 

God, please help my boy.

The psychiatrist has yet to order oral Haldol boosters or move up the injection.

This didn't have to happen! Yes, sorry but it's true, I told you so!!!!

Feb 25 - finally, Ben is scheduled to get his next long-acting Haldol injection. It’s happening tonight.

But no.

At 7 pm I get a call from B Home. The pharmacist doesn’t see any medical coverage and won’t fill the prescription. This just becomes a thing at 7 PM? 

“Don’t worry,” they say. "If he gets more symptomatic we’ll just get him back to the hospital."

What?

But no one even knows if he has medical coverage. The case is still being “decided”, according to the DSS case manager I spoke to yesterday. This has been going on (I repeat, sorry) since October.

And this didn't have to happen! Yes, sorry but it's true, I told you so!!!!

Many many phone calls later (bright spot: the benefits manager calls me back even tho it’s past her workday hours), I am assured this will be straightened out by morning. If Ben gets through the night without full-blown psychosis.

If.

I hold my breath. But I do sleep. The benefits manager told me to.

Feb. 26 (today)

We think he’ll get the injection today. We think it has been straightened out, that the pharmacist will fill the prescription, that the nurse will arrive, that Ben will not run away from her (that has happened before)..

I’ll believe it when I get the final word. 

No, out of the hospital does not equal out of the woods.

And so many others have it so much worse. At least Ben has a roof over his head, staff to manage his care, a family that loves him.

But it could be so much better.

Quoting Willy Loman (again, and just as fruitlessly it seems) from Death of a Salesman:

 Attention must be paid.

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.

Schizophrenia and Parenting: Step In or Let Go? (reposted from HealthyPlace)

I no longer blog regularly for HealthyPlace.com, but still respond to comments from the years I wrote for them. In checking in, I noticed that the post with the most hits, and still bringing in comments, is this one. I wrote it almost exactly three years ago, but it still hold true. The situation may change (currently, our choices have upgraded to things like "should be support Ben's getting his own car?", but the dilemma - step in, or let go? - is the same. Every parent - whether or not dealing with mental illness - knows.

Here is the post, originally written May 31, 2011. (by the way, since this post, the apartment did NOT work out. See updates for details...Ben now lives with us.)

See if it resonates for you.

--------------------------------

A message comes to me via social media, along with an invitation to connect. It simply says, "My 27 year old child has schizophrenia, but will not get treatment."  Oh boy, can I relate to that. Unfortunately, this is a major dilemma facing all of us who deal with mental illness in our families.

Parenting is always about the precarious balance between stepping in to help, and letting go to allow learning from experience. From a child's first steps to his or her first relationship, car,  job, apartment...when to give advice? When to help? When to step back and watch them sink or swim?

For the parents of a child without a physical or mental illness, this process is difficult enough; for those who are dealing with illness in our children, it's that much harder. The consequences of stepping aside, of letting go, could be disastrous: poverty, hospitalization, an arrest, flight, or even - tragically - suicide.

Schizophrenia and Freedom Can Be A Scary Combination

Back when a hug was all it took...

 My own son, Ben, 29, has just moved from seven years in a group home (24 hour staffing) to his own apartment. There is some support - a caseworker, medication supervision - but also a new lack of structure. No required group meetings. No chores scheduled. No one - except the roaches - to know if he washed the dishes or not.

Am I excited for him? Of course. Am I concerned? You bet I am. Is there much I can do? Only some things. He could crash, he could cheek his meds, he could oversleep and miss an appointment, he could become lonely and isolated. But if I call to see how he is, he sees right through me. "Mom, I'm fine. I'll get to work on time. Of course I' m taking my meds. I'm fine in the apartment all alone on my day off. Yes, I"ll unpack  soon."

So I let him live. Alone. And I watch from the wings, ready to alert his caseworkers if I see any warning signs. Three days ago I saw the unmistakable (to me) signs that Ben had missed a day of meds - so I sounded the alarm to all new staff members who donot know his tricks yet. And now he's okay again - so far.

Now I only see him on family occasions, or  on rainy days when he can't take his bike to work. Could he wind up in the hospital again if I am not there to witness symptoms? Yes, of course. And I hate that. But we have only so much control.

My Adult Son with Schizophrenia: We Hope for the Best

As always, we do what we can and then hope for the best. Keep an eye out for trouble, and our hearts in a place of faith in Ben and his ability to make the adjustments to this new life.  Scary? Oh yes. We do the best we can for our loved ones -secretly or openly - and then sometimes all that's left is to take care of ourselves and the rest of our family.

My mantra at these times? "Whatever happens, we will handle it somehow."

I don't always know how, but I know that we've managed before, and will again. And I ask for help when I need it.

Mental Illness Treatment Laws: Does Connecticut Lag Behind?

The nation weeps

Weeks after the tragedy in Newtown, though facts are still to be confirmed about Adam Lanza's history, we struggle to understand how it might have been prevented - or, at least, how to help prevent it from happening again. 

First, some facts: Court-ordered hospitalization for mental illness is authorized in every state, but each state’s criteria for involuntary treatment is different. Connecticut's report card? Not so great.

“Connecticut's civil commitment laws are among the most restrictive in the nation when it comes to getting help for a loved one in psychiatric crisis,” said Kristina Ragosta, senior legislative and policy counsel for the Treatment Advocacy Center, who serves as the organization’s expert on Connecticut. Ragosta said the law is restrictive in three ways that differentiate it from states with stronger laws.

1. An individual needs to be dangerous before intervention is possible. The standard requires that the individual be a danger to self or others or a danger due to grave disability before commitment is possible.

2. The law provides no option for qualifying individuals to receive court-ordered treatment in the community. This makes Connecticut one of only six states that does not provide the option of assisted outpatient treatment (AOT) as a condition of living in the community.

3. The state’s standard does not take into consideration an individual’s past psychiatric history, such as repeated hospitalizations, and/or symptoms of psychiatric deterioration that could culminate in violence or other consequences of non-treatment."

Here is my letter to the state's bipartisan task force

Dear Committee:

I am the mother of a beautiful son who suffers from schizophrenia. "Ben" is now 30 years old, and with treatment is both a student (Dean's List) and taxpayer (employed in season at a Connecticut tourist attraction, where he interacts beautifully and appropriately with the public).

Without treatment, or when services are cut, he is a patient instead- wandering aimlessly through the halls of a psychiatric hospital until he agrees to go back on his meds. This has happened three times since Ben began his recovery phase - and each time we face the fact that he may never return to us, as there is no mandated treatment, no assisted outpatient treatment, and we his family are left holding the bag and guessing how to help him.

We have struggled to get our adult loved one help and been thwarted by the restrictive mental health treatment laws in Connecticut.

We were fortunate to get educated and supported by NAMI-CT, but other families are not so informed, and eventually feel they have no choice but to give up - and their loved ones wind up homeless, in jail, in a nursing home, or - worst - threatening others and/or acting upon delusions that are very real to them, and may include violence.

treatment works...when you can get it

While I understand that it is unclear what led to the events in Newtown, it is clear that our civil commitment laws are in need of reform.  Nancy Lanza, I will venture to guess, was left with no help, no legal right to mandate help for her son - and ended up guessing how to bind with him. In her case, she must have chosen the only thing she knew from her own childhood: target practice.

Mental Health treatment could have made all the difference.

Too many families, like ours, are left feeling helpless and unsupported. Eventually, our family was able to make educated guesses about how to help our son, because of NAMI, memoirs, and other sources of information. But not all families know how to find this info, and even we sometimes guess wrong. Trust me, no family should have to do it alone. We wind up broke, scared, frustrated, and grieving for the loss of hopes, dreams, and someone we love.

Mental health services make all the difference, and these are woefully underfunded, confusing to find, and difficult to maneuver.  The cost of not providing these services, as we saw in Newtown, is so much higher than funding them, both emotionally and yes, bottom line, financially.

The last time my son had a relapse, the government wound up paying for a seven-week hospital stay instead of part-time residential staffing that would have helped him stay stable.

You add it up.

Let's vote for our futures, and for the one in four families left dealing with mental illness all alone, and for the possibilities that can exist for those who receive treatment (assisted as needed) and support services.

We need a Kendra's law in Connecticut. It might have helped us so many times - and it might have helped those in Newtown.

You can read more about our story in my book, Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope. or I will be happy to come and tell you in person.

Thank you.

The Refeathered Nest: Not So Empty. Not Just Us!

As we near the end of National Family Caregivers Month, I've been thinking about the less obvious form of caregiving: the fact that so many of our kids return to their old twin (or larger)  beds in the family home, long after we'd imagined we'd have a nest empty enough to turn their old bedrooms into, say, a workout room. Ha.

Sure, my son Ben relies on us more than your neurotypical 30-year-old, because of the different life path affected by schizophrenia.  But my other children, too, rely on us a lot more than I did my own parents when I was in my twenties.  Financial help, washer-dryer privileges, family vacations.  But this seems to be the norm.

Are your kids back at home after college too? Here is why: (thanks to Hannah Peters, and collegeathome.com)Just, sayin' : we are far from alone!

The Parents Network: Eyes, Ears, Heart and Soul

Yesterday I had the pleasure of swapping stories, issues and tips with Susan Schofield, Host of Bipolar Nation on LA Talk Radio, and her husband Michael, author of January First: A Child's Descent into Madness, and Her Father's Struggle to Save Her. (reviewed in my last post)

Sure,we were talking author-to-author, host-to-guest, but mostly we were talking parent-to-parent.

Here is the episode of the show where you can download or hear our conversation.

We need each other. I can't tell you how inspired, informed, and encouraged I have been by the hundreds of families I have met and shared with in the years since Ben's first symptoms. Some of these encounters have been at NAMI Meetings and Classes, some by e-mail, in media or live appearances, others in the pages of books.

Without you all, I don't know how we would have survived. Thank you - for the courage to speak up, the willingness to ask questions and fight, the empathy to reach out.

This is what I hope to give back to you in the pages of Ben Behind His Voices, and in meeting you too.

Together we can make a difference. My favorite cliche - because, like many cliches, it is true.

What Else is New?: Research, Reviews, Presentations

Quick Updates: (1,2,3...)

1. Ben Behind His Voices Comes to New York City!

Reserve and Come to Free Event!

Venture House, Inc. sponsoring this awareness raiser - hope to see you there!

On September 20th, 6 PM (reception) 6:30 PM (Book Reading and Discussion) -

Zucker Hillside Hospital - 266th St. and 76th AveG
len Oaks, NY 11104

reserve your (free) seat at events@venturehouse.org

(Venture House is a clubhouse programlocated in Jamaica, New York City that provides services to adults with mental illnesses) 

2. 4HealingHearts Radio show - Conversation about Mental Health, Hope, Info, and Empathy - 8/3/12

have a listen here! or here's the link to download it

Listen to internet radio with 4healinghearts on Blog Talk Radio

3. More BBHV Reader Reviews: Thanks!

Thanks to the BBHV Readers on Goodreads for rating and reviews, including these:Kathy says: What an amazing book! Very informative, but above all, the love the author has for her son, Ben, shines through - even when Ben is feeling his worst... I highly recommend this book to anyone, if only to learn more about mental illness & how it changes the life of the person who has it & the lives of his family & friends.

Leslie: "Wow. So humane. So moving. This is going to be the first book I recommend to therapy patients and families dealing with schizophrenia. "

btw, Goodreads is a terrific site for those of us who love to read. Check it out!

Resilience: Bouncing Back...Bolder

One of the letters in "SEARCH" - the acronym I created and present re what families need when mental illness strikes (or, really, we all need for most challenges) stands for:

Families Have Recovery Process Too

R = Resilience

I wrote about resilience in an article about happiness called Bouncing Back Bolder -because the way we deal with setbacks can strengthen us. We all have them, of course - but sometimes the road when dealing with mental illness seems particularly full of detours and pitfalls.

So when I was asked to be a guest on Angel Tyree's radio show, Bouncing Back to Your Brilliance, I figured it was karma! Angel was a terrific, well-informed and empathetic host. You can hear the half-hour show here.

Here is an excerpt from the article, too:

Confession: I don’t really like lemonade all that much. And, I also think that lemons have their place in this world without being sweetened and liquefied: to balance the strong flavor of swordfish, add tang to a glass of water, keep apples from turning brown.

This much, though, I know is true: if life hands you lemons, and you choose to make lemonade, you have the supply the sugar yourself.

Mental Health Awareness Month, Mothers' Day, and Memoir Readers

May is days away - bringing both Mothers' Day and  Mental Health Awareness Month. This has me thinking about wonderful readers who have taken the time to share their thoughts with me - and not only those who are affected by mental illness in their families (one in four families, btw- we are "the 25%"), but also those who see Ben Behind His Voices as, to quote the Library Journal review, "a darn good read for memoir fans."

Sure, I wrote the book to open eyes to the issues surrounding mental illness and the family, and to help others going through it - but under it all, it's also the story of a mother (and a sister) who refused to give up on someone they love. I don't have to have shoveled coal to appreciate Angela's Ashes. And I'm glad that many family members in "the 75%" not directly affected by mental illness in a loved one are still writing to say how much the story of family love and strength means to them.

a gift from Ben, Mothers Day 2011

Here are some recent comments. Thank you!!!

Randye Kaye has touched my heart with this book. It's not just about battling a disease, it's about a mother's love for her family and her relentless crusade to help her children to be the best that they can regardless of what obstacles in life are placed in their way. Randye brings you into her family circle and writes with such emotion that you feel that you are experiencing every high and low with her. It's a story of courage, of never giving up, of hope. It is a story of inspiration that leaves you feeling that although life does not always turn out the way you hope, it can be ok. This book is not just for families of children battling mental illness, it's for all parents who face different challenges with their children. I could not put the book down once I started it. Such an incredible story. I hope there is a sequel so we can see how Ben is coping a few years from now. Great book for all, I would highly recommend reading it. - ESM, latest customer review on Amazon

It isn't often that I spend a little more than a day finishing a book. I usually have 2 or 3 books going at once and I finish them as the spirit moves me...I was truly moved by your story. - MS, Chicago reader

What strikes me most about the story is the reserve of human endurance and the depths of love and resilience of the family...And Ben: how courageous he is and what it takes to manage the disorder comes through on the pages. Randye Kaye's resilience, determination and courage are inspiring to anyone who must go down this difficult road of schizophrenia or any other chronic illness...this is a painful situation and yet the reader is left hopeful because of the power of hope and love. It shows what it means to be human. - book club reader, Syracuse NY

What can you say about a book that chronicles the descent of a sweet child into mental illness? This is an excellent book, which everyone should read. Mental illness -- and especially schizophrenia -- is so stigmatized that people are afraid of those who are ill. It is sad to watch, with the author, as her sweet, bright son deteriorates before her eyes, and the years of seeking it took before someone correctly diagnosed his disease. And her reactions -- not wanting to be with him, but wanting to protect him; hating him while loving him; missing the beautiful child he once was -- are heartbreaking. I highly recommend this book. - Laura Nichols, Goodreads reviewer

A truly inspiring story of the struggle against mental illness has recently come to my attention. Written by the mother of an individual suffering from Schizophrenia, "Ben Behind His Voices" is a truly illuminating tale of one family's long term experience with the various trials and tribulations that go hand-in-hand with mental disorders. - from Max Ingram, blogger at Runic Realities:

"Shut Up About Your Perfect Kid": Book Review

Gina Gallagher is co-author with her sister Patricia Konjoian of Shut Up About Your Perfect Kid: A Survival Guide for Ordinary Parents of Special Kids.  I first saw this book at NAMI's 2011 National Convention in Chicago, and found it full of useful and realistic information to go with the catchy title.

The authors also write a Shut Up About Your Perfect Kid blog , and I highly recommend that as well.

Since Ben Behind His Voices will be at this year's NAMI Convention in Seattle, I hope to find Shut Up About Your Perfect Kid available there once again, right along with mine.  I could have used this book when Ben was going through frightening changes that shook my parenting confidence to the core.

Here are some things not to say, according to the authors (details in their book and blog):

1) "I don't know how you do it."

2) "Give me your kid for a week and I'll whip him in to shape."

3) "You poor thing."

4) "I'm so lucky, my kids are healthy."

5) "If that were my kid, he'd be different."

As the mother of an "imperfect kid" whose imperfection happens to be gradual-onset schizophrenia which began in his mid-teens, I have been on both sides of the fence; I went from proud Mom (though I like to think I didn't brag) to confused/embarrassed/guilty Mom, and back to proud Mom with a new set of criteria for my pride.  If you need a friendly, realistic and exceptionally empathetic and informative guide to how to maneuver your way through the world of "Perfect Families", I highly recommend this book. Check it out!

PBS AZ Opening Question: "Who is Ben?"

The interview for PBS in Phoenix, AZ last Thursday began with this wide-open question:
Who is Ben?

How to answer? Well -

different trees, same mental health issues

He's my son.

He is a sweet, loving, bright, caring, 29-year-old.

And - he has paranoid schizophrenia.

Very importantly, he is being treated for schizophrenia.

Here's how I answered this question, and the thought-provoking ones that followed, in this PBS interview on Arizona Horizon with Ted Simons.

In the same state where Jared Lee Loughner just lost his third appeal over forced medications, this is a very important distinction. My son, Ben, is in treatment.  Loughner, who killed six people and wounded former U.S. Rep. Gabrielle Giffords and 12 others in nearby Tucson just over a year ago, did so as a person whose schizophrenia had gone untreated for too long - and with disastrous results.

Here, in the state of Arizona where many still seem in a state of emotional disbelief over what happened in Tucson, the consequences of inadequate care and services for those suffering with mental illness seems even more obvious - and undeniably important.

In three days, I have made the rounds, courtesy of the Arizona Foundation for Behavioral Health (AFBH)andASU's Center for Applied Behavioral Health Policy, speaking in a community lecture, two media interviews, and meetings with NAMI as well as university students and educators in the field.

It has been a whirlwind - and I have met so many wonderful people who care about the issues that can make a difference for all of us affected by mental illness: people who have been diagnosed, those who love them, and the community they live in.

I have but one story to tell with full accuracy - our own - but I have heard many more in these few days. I hold tight to the belief that, one story at a time, shared without shame and empowered by education and courage, we can all make a difference in the way services for those with mental illness are funded, and to the laws that need to be passed to increase research, provide resources, and restore dignity and health to those who have been let down by the system that used to help them live a useful, dignified life.

Satellite Media Tour: Tales from the Virtual Road

Wow. Last Tuesday, all from the comfort of the Murray Hill Studios in NYC, I had the privilege of appearing all over the country thanks to the magic of Satellite - and a fabulous make-up artist didn't hurt, either.  Here's one interview that aired on Fox News (.com).

Since Peggy Ann couldn't see me at first, she thought I was a "he" at first - a problem my mother tried to solve by spelling my first name with that "e" at the end, ages ago...) - but then, of course, I countered with my own slip-up, calling her Betty Ann. Not on purpose, I swear. After several interviews in a row, the brain tends to freeze a bit like an overworked computer.

This was a fair and neutral interview, although that word "unfortunately" did creep into her medication question. I think I handled it fairly, though. What do you think?

Connecticut Style, WTNH: Interview with Jocelyn Maminta

Jocelyn Maminta is a wonderful journalist and talk-show host - and our paths have crossed many times throughout the years. During my years as a radio personality,  speaker and now author, we often appeared together at local events, and I've had the privilege of hearing about her personal inspiring project, Caroline's Room. She is a skilled newswoman, warm and genuine person, and a fellow working Mom.

Today Jocelyn interviewed me for WTNH's daytime show, Connecticut Style. Thanks to all involved for the chance to share our story and increase awareness of Ben Behind His Voices, as well as the reality and hope it contains.

Ben Behind His Voices: wtnh.com

Risk: The Price of Independence?

Ben has been spending a lot of time with us lately; in fact, this is the closest we've had to daily contact since he lived with us prior to his first hospitalizations in 2003.  It's different now; he has grown.  Eight years in a group home have taught him independence, respect and self-esteem that he'd have never gotten under our roof, safe within our wings and safety nets.

But there is a limit.

Since his episode this summer (right after the too-swift move to unsupported housing), we have had to step in and help guide Ben back to the self-sufficiency he'd earned before. Now, though, I don't trust the services he is receiving - and, I think, he doesn't like living alone as much as everyone said he would.  So, much more often than before, he spends the night with his family.  We drive him to school, to work, to meetings - feels like high school years all over again, pre-drivers' license.  It's fine for now, because it's what Ben needs. But we encourage as much independence as we can, to boost him back up to the mental illness version of young adulthood.

Two nights a week, therefore, he stays at his apartment after school and then takes the bus to the "anonymous" meeting he has attended for six years. Last week, to our horror, this solo journey into a questionable area of town resulted in near-disaster. Ben was mugged. His cash, his beloved backpack (containing precious cargo: textbooks, school papers, handheld video games, poetry, the ipod he had saved for for over a year), his keys - all stolen. Psychically, it could have been so much worse - he was thrown to the ground and threatened with what they said was a knife , but he got away with a wrenched shoulder, a red mark on his neck, and some scrapes. Whew. But now he is, understandably, skittish. He won't go into that neighborhood again, and he is easily spooked now. Anyone would react that way - but with mental illness complications there is addition worry: will the stress trigger symptoms? will he backtrack in his progress? will pain relievers interfere with his meds?

We count ourselves lucky, of course. He is alive, and somehow we will replace the physical things he has lost. He reacted very sanely to the threats - "take anything you want, just don't hurt me." Thank God. But he feels violated, spooked, and afraid in ways of the independence he has worked so hard to regain.

One day at a time. I think we'll drive him to meetings in safer places for awhile. I'd rather he be safe than independent right now. And the delicate balance continues.

Parenting, Illness, and...Guilt?

Amanda Fellows, a fellow voice talent and radio host for Business Women Connect, interviewed me today for her show on Blog Talk Radio.  We had a luxurious half hour for the interview, rare in commercial radio. Of course, it went by in a flash.

Amanda Fellows

Amanda asked two questions I hadn't heard yet in this round of interviews for Ben Behind His Voices. One was about the process of narrating my own words in the audiobook, published by Spoken Word Inc. (since we are both voice talents, that question wasn't too surprising). The second was about two of the book's chapters, and my feelings as a parent when I had to let go of Ben and allow him "freedoms" that terrified me: once when he wandered homeless in Idaho, a few years later when I had to declare him homeless in order to get him into the system of state care that would eventually help him recover without my constant watch.

Amanda asked, "How did you deal with the guilt?"

My answer had to do with recognizing the difference between productive "appropriate" guilt (e.g. forgetting your kid's birthday and making sure you never do it again) and unproductive "inappropriate" guilt (e.g. I feel bad that I had to ground you, and you missed a party).

Mental Illness certainly raises these stakes - raises them high - but still guilt can be a waste of energy, and can hold back progress that is painful but ultimately necessary. You gotta do what you gotta do.

You can hear the interview here:

Listen to internet radio with Business Women Connect on Blog Talk Radio

Mental Health Issues: Lessons from the Talk Show Circuit

audiobook in CD format

In six days, Ben Behind His Voices will be officially released (audiobook version, too - preview it here!), although according to Amazon stats there have been healthy advance sales of the hardcover and kindle versions. So it's out there! But, to spread the word, getting the media interested and involved is a huge help - and it's definitely a live-it-learn-it series of experiences for this author.

So far, as far as print, radio and TV go:

a handful of BlogTalkRadio interviews - great hosts, interesting conversations, not sure who listens but I hope there's a reach.  Archives exist.

The Positive Mind on WBAI inNYC with Armand DiMele. Hour-long, insightful interview with genuine back-and-forth conversation. You can hear it on the "Press" page on this site or on Armand's website.

Interview segments on other radio shows such as Kathryn Raaker's Let's Just Talk, airing on several stations. July 9th segment 1, if you're checking the archives. Kathryn was genuinely interested, as she could personally relate from her own family experience. Great prep, great passion for sharing the message.

Boston Globe interview appeared in print last week - done over the phone, all I had to do was talk. Bloggers have also "interviewed" me by asking questions in writing, to which I responded also in writing- essentially writing my own article, I guess, though interesting  answers can only come out of good questions, yes? (links are on Press page too)

This week I drove to Washington DC to appear on "Let's Talk Live", a local ABC-affiliate daytime talk show.  If you check the archives/blog of that show (9/7/11) you'll see our segment did not make that cut. What did? Plastic surgery and the "Blondes vs. Brunettes" female football game (For a good cause, so not frivolous. But still). Hmmm.

Then I went to tape an interview for PBS show To the Contrary. So my six-hour drive was not pointless. My experience there is detailed in my article for HealthyPlace.com. It made me think, that's for sure. They wanted to know if the book brought anything new to the "mental illness issues" table. In my own personal car-talk on the way home, I found the answer. Yes, what we bring to that table is our story. That's what sets us apart. Of course, we tell the story for many reasons - reduce stigma, increase understanding and respect, advocate for earlier detection, better services, more research. Yes. All that. But if the story grabs you, then Ben and our family will live in your heart, where you might become more aware of these things. That's our real "angle": the human face of the "issues."

More media opportunities ahead - but each is its own experience. Yes, lessons abound. And we've just begun!

PBS, ABC, Boston Globe, and the Flu

when mommy's hug could cure

Ben has spent the night - we've all been there - worshiping the porcelain throne.  Either a stomach flu, or spoiled Chinese food (thanks, Hurricane Irene), but who cares why? Poor thing is in pain. No mom wants to see that. Plus, he is whining! Ah, yes, nothing like a 29-year-old whining "Mommy...." - but whenever I'm sick I want to do the same thing, and my mother's been gone since 1994.

There's an additional issue, of course, when your child has schizophrenia. Will he, can his body, keep the meds down? Last night we carefully orchestrated the meds between episodes, and since they are mainly in liquid form we can only hope most of them got into his system somehow. We counted (believe me, we both had one eye on the clock) 55 minutes from ingestion to, um, rejection.

Ben's main concern, despite his pain? "If I throw up, I won't have to go to the hospital, will I?" I thought, at first, that he was over-dramatizing his stomach pain - but then realized he was worried about having to go back to the psychiatric unit for missing one dose of meds. I'm beginning to think this last relapse really affected him - and that maybe - just maybe - he is connecting the stay to his low levels of meds at the time.

I hope so. but - as always - one day at a time. And this morning, thankfully, he is on the mend.  He had to call in sick to work, which he hates, but at least he's staying put on the couch. And his first question this morning, after making sure we called his employer, was: "When should we do meds?"

taping 9/7/11 - watch for airtimes

Meanwhile - The Boston Globe ran a feature on the book recently, and I will travel to Washington DC next week to appear on an ABC-affiliate talk show live at 11 AM, then tape "To the Contrary" for PBS.   First really big-time appearances for the book. What if they ask me what my qualifications are? I wonder that, too, as readers are starting to write to me, asking for advice that I wish I had for them.  All that I know is in the book, and though I wish I could solve others' problems I know I can't. Here's my thought:"

I'm just a Mom who never gave up on her son - but who also learned that, someday, she might have to."

Please visit the new "Press Room" page,  for info and links to more articles and interviews.

Sharing the Message: Interviews, Reactions, Reviews

I had the pleasure of being interviewed on WBAI  in New York by Armand DiMele, for his popular broadcast "The Positive Mind" .  The show aired on August 23, 2011, but you can listen to the archived show here:

If you'd like to read more about Ben Behind His Voices, I've had the pleasure of being interviewed by several writers recently. Here are a few links:

Review and Interview

Oakland County Moms Interview,

Schizophrenia - Parenting Mental Disorder

Families on the Treatment Team- and book reviews

First two official reviews for Ben Behind His Voices: exciting! Every positive review, from official sources like these and from readers, will help spread the message of respect, empathy, truth and the need for supportive services for those with mental illness and the people who love them.

From Kirkus Reviews and Library Journal:

An illuminating portrait of a parent coping with the guilt and heartbreak that come from feeling like one can’t “fix” one’s child. VERDICT: Recommended for anyone who is involved with teens or those with mental disorders, and a darn good read for memoir fans.-Library Journal

A mother wrestles with the advent of her son’s schizophrenia and its long, painfulunfolding….The author….is eminently helpful, particularly in the matter of self-medication,which so many of the mentally ill prefer to taking the medications that have been prescribed for them….Heartfelt and surely of help to those new to living with mentally illloved ones of their own.-Kirkus review, June 15 2011

Thank you so much for "liking" BBHV's facebook page, following this blog, calling your libraries to ask them to order the book, and especially now for this: your comments of support re Ben's recent relapse, and your agreements in outrage that transitional services are greatly in need of improvement. Ben is currently, thankfully, still safe in the hospital while I scramble to try and figure out what options there are for after his release.  This I know: if proper plans are not made, he'll slip through the cracks again and will re-relapse. There needs to be the "Person-Centered Treatment" he was receiving in his group home - and that's in opposition to the current team's assessment that Ben doesn't need that type of supervision anymore.

NAMI meets in Chicago

The theme of this year's NAMI National Convention was "Together We're Better." Yes, indeed. I learned so much last week, from so many who are advocating for our loved ones, and will do my best to share with you.

Here's one: Treatment Advocacy Center. Their goal? "Eliminating Barriers to the Treatment of Mental Illness." Check them out - they have a great video there as well as tons of resources.  I also met Canadian Susan Inman, who wrote After Her Brain Broke, Helping My Daughter Recover Her Sanity. I recommend her book and articles as well. Now, with Ben hopefully back on the road to medication adherence, it's only because of my insistence - and my official role as conservator - that information is shared with me as to his treatment plan. While I do realize that Ben's recovery is his own journey, I'm not about to let him be totally in charge at this point if I can help it. There is always that balance between stepping in a letting go. In one article called "Help Us Help Our Children" , Inman says,

"This notion of the overly involved mother is especially persistent and pernicious. Common sense tells women that their currently ill children need their assistance, while mental health professionals are too often quick to label their efforts as intrusive and pathological."

Yes, Together we are Better. Families should be included in treatment info and plans whenever possible. Let's work together for "Person-Centered Treatment" that respects the individual but does not close its eyes to the realities of how brain disorders can affect judgment.