Ben's Poetry, age 21

Seven years ago, before Ben's first hospitalization, he took a poetry class at a local community college.  I look at his class assignments now and wonder how I could ever have doubted the seriousness of his illness. Where is the line drawn between creativity and complete inner chaos?

A sample:

GOD
My wind grows weary
Monotony is thick
The rivers ain't clear
As I am stained by this thick...mud puddle
Whilst I bear my own radiance
Sinned they be by a typical DEMONstration
Of a casual world spoiled by love
And a casual battle and death from above
Preaching false ideas
Made right for hatred is doubt
And through this calamity I can hardly reach out...to you.

This short poem makes some sense, though many others did not.  But - the "DEMON" in capital letters? His own radiance buried underneath thick mud?  To whom could he not reach out? To God? To me? But I was there all along, and at that time he refused my love. What was I to do?

No Casseroles for Schizophrenia: Where truth, support, and hope began: NAMI's Family-to-Family Course

Where truth, support, and hope began: NAMI's Family-to-Family Course

Now:

Ben made the Dean's List again! The letter from our local community college confirms his status and adds, "It is a a very worthwhile accomplishment to have become one of our best students." For the first time in over a decade, Ben actually cares about his grades;  there was a time he considered report cards a government plot to control him.  Ten years ago, he was a high school dropout, refusing to discuss his future plans, wandering through our town streets because he "didn't like the stupid rules at home."  Sometimes, then, he slept in the park.  My son, homeless and hopeless. His family: confused, devastated, always at our wits' end. 

Recovery takes time - and a lot more. So as we take this journey, I continue to teach (and train others to teach) a course for NAMI (National Alliance on Mental Illness) called Family-to-Family.  This program - one of many offered by NAMI -saved our family by teaching me about mental illness and giving me the skills to deal with our new reality.

It was there that I learned the devastating truth that was necessary for the start of recovery: Ben truly did have a serious, and severe, mental illness. He was not "stubborn", or "going through a tough adolesence" - he was ill, and it wasn't his fault.  What did that mean for us? For him? By opening my eyes to the facts, this course opened my mind to solutions.

I am forever grateful to Dr. Joyce Burland, who created the 12-week class, and to everyone at NAMI who continue to help bring it to families like ours.  For free. Still, so many families don't even know what it is.  I urge you to find out.  Visit http://www.nami.org/ and find a wealth of free information, and a link to your local affiliate.  Click on "education" and there you are.

Find NAMI. It's something you can do for yourself - -RK

Excerpt from Ask about Ben Behind His Voices: One Family's Journey through Schizophrenia to a New Normal. December2003 (for info on publication, contact Claire Gerus, cgerus@comcast.net, literary representation)

In my years in NAMI, I’ve met some unforgettable people. While Family-to-Family is strictly for relatives of people with mental illnesses, the support groups also include the “consumers” (the current term for the ones who have been diagnosed with the illness) themselves, those who are struggling with their own recovery and ready to accept and talk about it. There are support groups strictly for consumers too, but it’s amazing to sit in a room where consumers and family members share their experiences with each other.

I’ve met people with such courage, such insight, such humor along with so many losses. I’m constantly awed by their stories, with the things they’ve lived through and the actions they’ve taken. With heart. With determination. With unending, powerful love.

I’ve met families with riches and families on welfare. Families of many colors, religions, levels of education. I’ve met adult children who grew up having to chase their mother down the street while she was in a manic phase; wives who had to play Santa Claus when their ill husbands were suddenly hospitalized on Christmas Eve; brothers who have lost the sibling who once taught them to ride a bike; sisters who get twenty confused phone calls a day from the big sister who used to help them with their homework and is now living on the street but refusing help.

I’ve met people who spent their life savings, mortgaged their homes, drained their retirement accounts in order to try a new treatment for their relative, or afford a few months in a private facility that either seemed promising or was simply the only alternative for post-hospital care. I’ve met parents whose children were missing for weeks, sometimes years; husbands who had to chase down their wives, around the world or across the country, after a disappearance sparked by mania. I’ve met people who have lost their loved ones to suicide.

Many of the families I meet have other children – healthy children, “normal” children. Luckier children. Mental illness, contrary to embarrassingly recent thought, is not the fault of the parent. It is a biological illness of the brain. That fact - that proven, medical fact - is a major hurdle for many family members to accept, for it means two contrasting things: one - that you didn’t do anything wrong. The illness is not your fault; two – that your relative really, truly is ill. You cannot “fix” this any more than you could “cause” it. You have so much less control than you wish you had.

With that said, though, families find that there is still much that they can do to help. There is empathy, understanding, advocacy. There are limits to set, programs to learn about, ideas to set in motion. That help may or may not be accepted by your loved one, but in the meantime, you can – you must -help yourself. There is grief – so much grief, so much loss. But there is also hope. You must live your life in between the storms.

Posted by Randye Kaye at 7:14 PM

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Labels: F2F, Family-to-Family, mental health, mental illness, NAMI, parenting, Randye Kaye, schizophrenia, stigma

3 comments:

glory said...

Randye, your blog is wonderful. It'll be a lifeline to families challenged by schizophrenia. 

February 22, 2010 8:32 AM

Randye Kaye said...

thank you! that is the hope - 

February 22, 2010 3:01 PM

Logicmaven said...

Trying to understand it all. Things were looking up. My boy seemed to be doing much better -- much clearer, much more in focus. I started to wonder if it was all in MY head; after all, he hasn't had a formal diagnosis in almost ten years. It seemed like things were moving toward "normal." We spent some wonderful days together laughing, visiting the MoMA, remembering how alike we are and forgetting how different. I tried to gently push him toward mental health care -- he refused.Then he took off again. He's back in the city, "staying with friends." He calls me at night to tell me he's cold, to complain about not being able to get seen at the methadone clinic, to tell me he's hungry but he's not coming home.I don't know how I would survive without the support of friends.Thanks, Randye, for being there. Thanks for telling me about NAMI. Your words help so much.

March 2, 2010 11:19 AM

No Casseroles for Schizophrenia: Where truth, support, and hope began: NAMI's Family-to-Family Course

Now and Then: Psychic Vampires on the Phone

When your child calls you, do you experience a moment of panic before you pick up? Even though your love knows no bounds? If your child has ever called you for help - the car won't start, he is lost, her boyfriend broke up with her - you know the feeling.  If your child has a mental illness, you come to expect it - sometimes even when things are going well. Your comments are welcome.

Now. A text from Ben. It almost always reads, "call me when you get this please" - and I become aware of an involuntary tightening in my chest.  Will that knee-jerk reaction ever go away? These days, he often has good news to share: a theatre class he enjoyed, a good AA or NA group. But years and years of crisis calls leave their mark. Even in the recent years of recovery, there have been close calls, where only quick action had prevented a new hospitalization.

In the confusing years before the diagnosis - even before the calls began to come in from the police, my neighbors, or hospital Emergency Rooms - there were phone conversations with Ben like this one:

Then, 2001: (Excerpt from No Casseroles for Schizophrenia: Family Lessons on the Journey to Acceptance and Hope, previous draft of Ben Behind his Voices)https://randyekaye.com/

Now it was March, and he was on the phone again, long distance (and collect) from Idaho. “Hi, Mom. How are you?” Ben had been calling me occasionally ever since he’d been kicked out of Waterfalls at the end of October. Sometimes he called every day; sometimes a few weeks went by before I heard from him. Recently we’d been speaking every few days. I never knew what to expect, what he would say.

“I’m fine honey. How are you?”

“I’m great, Mom.”

“That’s good.” Silence. Where do go from here?

"Mom?”

“Yes?”

”Do you know what a psychic vampire is?”

I stand very still and close my eyes to make this go away, like a child who doesn't want to see the milk she spilled. “A what?”

“A psychic vampire. ‘Cause they have them here.”

This was something I hadn’t heard from him before. What is he talking about? Then: What kind of drugs is he on? Then: Stay calm. “No, Ben. What is a psychic vampire?”

His voice took on that tone of superiority, and yet there was panic in it too.“They steal all your energy. It’s really scary. And there are psychic vampires here, I swear.”

I had no idea what to say to that. I think I assured him that you could prevent these vampires from stealing your energy if you wanted to. If he was on some drug, he probably wouldn’t remember this conversation anyway. But I certainly would. I added this conversation to the list of behaviors that were becoming weirder, and more frequent.

At first, after Ben left the program, he had called to ask for money, or to tell me which friend’s couch he was sleeping on. He reported looking for work, getting jobs, losing jobs within days. He called to tell me he loved me. He called to tell me that he was hungry and it was all my fault. Then, the weird calls had begun:

“Mom, I’m doing great! I spent all afternoon yesterday, walking by the side of the highway, and screaming. I feel so much better now. It’s good to get your feelings out.”

“I’m good, Mom, but I spent the night sitting on the roof and looking at the stars. They are awesome! Oh, and I sang to myself all night. It helps me concentrate.”

“Steve kicked me out, Mom. His Dad said I couldn’t live there since I l owe him so much money. But I think there’s a homeless shelter that will take me in. Then I’ll get a job while I’m living there and save some money and come home.”

And now, psychic vampires. What are the drugs doing to his brain? I was back to thinking that this was just a problem of substance abuse, that Ben had to learn from natural consequences. To do that, he’d have to hit bottom. Good and hard.

And yet, another thought kept growing: the theory that Ben might, after all, be truly ill. What if he hits bottom and is so impaired he doesn’t even know it? What if Ben had some kind of mental illness? So many people had talked me out of that idea in the past. “No, I’m sure he just needs therapy. Sobriety. Structure, discipline. To get closure with his father.” On and on went the theories, on and on went my hopes that this was anything but a real mental illness. Please let it not be true.

If only I could have willed it to be true, loved his symptoms away, I would have. But evidence had continued to pile up, even though I wanted to believe anyone who told be it didn’t, couldn’t, add up to something as serious as mental illness.

(for more information on this book and presentation, please visit https://randyekaye.com/)

Why the title "Ben Behind His Voices""? Excerpt from Introduction

why? because Ben is still in there, struggling to connect through the chaos of senses gone haywire, or sometimes dulled by the meds that keep him out of the hospital, in his brain.

Introduction - 2010

My son Ben knows the lyrics to every song I’ve never really noticed on the radio. He’s the one who teaches to me to appreciate the poetry in songs by Led Zeppelin, Pink Floyd, and Eminem. He’s my favorite companion for performances of Shakespeare in the Park, because just at the point when I’m starting to think why don’t they just speak English already?, he invariably whispers something like, “Wasn’t Shakespeare a genius, Mom? Listen to the music in the way he wrote those lines.” Shame on me.

Ben loves nature, children, fantasy video games, helping others, the Indianapolis Colts, Thanksgiving with the family, and vegetarian Thai food. He made the Dean’s List at college last semester. He kills at Scrabble. He has offered to counsel my best friend’s nephew, who is still lost in the world of drug addiction.

Ben is 27 years old. And – oh, yes – he has paranoid schizophrenia.

Ben is not “supposed to” care about others - that's one of the symptoms of schizophrenia. But he does. He is full of love, and we're grateful for his presence. Our family has learned to live in the moment; there are, thankfully, many moments to treasure these days. But it wasn’t always like this, and we know, all too well, that tomorrow could bring more change. Still, we have found hope and love that we once thought might be lost forever.

When Ben was hospitalized five times in 2003 – the height of his crisis period - for symptoms of this illness, no one in my life really knew how to react. No one showed up with casseroles at our door– especially not by the third or fourth hospitalization. People don’t really know what to do, how to support the patient and the family. Unlike a physical illness like a broken leg, there’s no timetable for recovery from something like schizophrenia. There’s no sure moment of getting better. There is no cure; there is only management. As is also true with cancer, there’s always a chance for recurrence after remission. But unlike most cancers, the patient’s very soul seems to be affected by mental illness. The organ it affects is the brain, and that’s the window to our personality, perhaps to our soul. People are frightened of mental illness; they’re uncomfortable visiting someone on the psych floor. The family feels isolated, stigmatized, and often very alone. But there is hope. Ben is in recovery. He is not “cured”, but he can be kept in careful balance. He is part of our family. He is worth knowing. He deserves to be understood and accepted, just like anyone with a more visible disabilty.

Every morning and evening, Ben takes medication to keep his brain in balance. He doesn’t agree that these meds do anything to help him, even though if he stops taking them he winds up back in the hospital within days. All he knows is that they make him feel mentally cloudy and physically exhausted. Ben tells me that he feels like a blanket has been thrown over his mind when he’s on his medication; he loves the initial feeling of clarity and energy that comes if he stops taking it. I know that this euphoria lasts only a day or so, but by the time Ben’s brain has raced past that first phase, he’s too symptomatic to realize that anything’s wrong. He generally just thinks that “people are treating him differently” for some reason. Sure we are. When Ben shifts focus to his inner world, and we try like hell to bring him back to us.

Without the medication that restores the chemical balance in Ben’s brain, he has to fight to remain connected to what’s happening around him instead of within him – and the strain of that effort is heartbreakingly apparent. Ben wants, with all his heart, to prove that he doesn’t need the medication that we know has brought him back to us – at least halfway back.

new excerpt: from Part One: Before the Illness

My Baby Boy

April 30, 1982

It’s hard for me not to see Ben’s life in two parts: before the illness - when everything seemed manageable with normal parenting skills – and afterwards, when all hell broke loose. Hopefully, now, he’s in a third phase: recovery. I remain so grateful that Ben’s doing well. But I am still, on occasion, haunted by the child he was, the child we lost. That child is still inside of Ben, peeking through the cloudy veil of schizophrenia and the medications that keep it under control. Like all parents, I miss the baby I once had. But I also mourn the man he might have become, if not for the illness that got in his way.

My baby. Benjamin was born on April 30th, 1982, nine days late, after a natural labor and delivery. No drugs. See, even now I remind myself, this is not my fault. I ‘d done everything right during the pregnancy, I swear - unless you count the Pepto-Bismol during the first week of what I’d thought was a stomach virus but turned out to be morning sickness. I’d even gotten my husband, William, to change the cat litter.

Although - maybe I had chosen the wrong man to marry. Maybe his genes were somehow flawed and I should have been able to see the signs. I’ll never know the answer to that, but it’s the question I am asked most often: “Does schizophrenia run in the family?” I’m not even sure why it matters, except that the questioner wants some kind of assurance that it can’t happen to their child. ......

.....(So) before William and I marked our first anniversary, we celebrated the birth of our gorgeous baby boy. There were no wails of outrage as this child was brought into the light from my womb; there was only a deep breath of life followed by fascination. His face was perfect, and somehow wise. He was beautiful, so beautiful. From his very first moment in the world outside my womb Benjamin was alert and assessing the environment through those intent brown eyes that later would so resemble my own. In the hospital room, I stared at this new life, living the first page of his history, and imagined what else would be written there.

I promised my sleeping little baby that I would always do my best, always stick by him.

Little did I know how fully, and for how long, those intentions would be tested. Never once, with no history of it in my family, did I expect a mental illness would steal his life from him later on. You imagine cuts and scrapes, broken arms, broken hearts, even car accidents or kidnapping – but never schizophrenia.
---------------------

SIDEBAR:
Is schizophrenia inherited?

Like many other medical illnesses such as cancer or diabetes, schizophrenia seems to be caused by a combination of problems including genetic vulnerability and environmental factors that occur during a person's development. Recent research has identified certain genes that appear to increase risk for schizophrenia. Like cancer and diabetes, the genes only increase the chances of becoming ill; they alone do not cause the illness.

_____________

To learn more about this manuscript, contact randye@randyekaye.com

opening chapter, the book

This post updated January 28, 2011 - because the "right publisher" has come to us! Rowman and Littlefield will publish Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope in August of 2011! Thanks to Claire Gerus for repping this, and to R&L for believing in it. Please go to www.randyekaye.com to sign up for updates on the book, or join the facebook group Ben Behind His Voices, the book.

Back then I wrote:
The right publisher will help bring hope and understanding to the many families – one out of every four, in fact – who live with mental illness every day.

A young man stands before you. Diagnosis: Schizophrenia.

Is the situation hopeless? No. Is his life worthless? Absolutely not. Is he about to pull out a gun and begin shooting? Despite what the media would have you believe, the answer is still no.

Did his family stand by, helpless and confused, as he fell into pieces bit by bit in ways they could neither understand nor control? Well - yes. Unfortunately, yes.

But is recovery also possible? Can the broken parts be pieced back together? Also – with education, support, acceptance, and love – yes. YES.

I will post excerpts from the book here on this blog, so that others may begin to hear the story. If you want to know more, please follow.

This is from Chapter One:

It’s the night of the Great Northeast Blackout, August 2003. I sit in the ER waiting room, watching my son Benjamin, 21, recently diagnosed with paranoid schizophrenia. He stares at his feet, mumbling to himself, possibly to voices only he can hear and whose existence he always denies. Ben glances up at me now and again, his lips in a faint smile but his eyes clouded and unreachable, and then returns to his inner conversation. Suddenly he looks up once more, this time to address the elderly woman seated in another hard plastic chair across from him, coughing violently.

“Excuse me, ma’am, are you all right?” Ben asks.

The woman smiles. “Yes, son, I’ll be OK. Thanks.” She takes a sip of bottled water; her coughing calms. Only then does Ben abandon the battle to stay focused on the outside world, and give in to the voices. Not until then does he return to his own internal world of psychosis. This, I can tell, is a relief for him.

He’s still in there, I thought. He is worth saving.

This was to be Ben’s fifth admittance to the psych unit in six months. It also marked the beginning of his recovery - and the start of my family’s road to acceptance of his illness. No Casseroles for Schizophrenia outlines that journey, from the bewildering and ultimately terrifying arrival of symptoms, through the crises of psychosis and hospitalizations, and finally to the “new normal” of recovery and hope.

Schizophrenia is arguably the most misunderstood mental illness; certainly no one comes to your door with casseroles when your child is hospitalized with this illness, especially after the first time it happens. But a person with schizophrenia is a person still worth loving – and that love helps immeasurably on the journey to recovery and acceptance.

All is not lost.

Family to Family

Back to teaching NAMI's wonderful course, Family-to-Family. As always, the love and confusion, the bravery and frustrations of these families amaze me.

Yesterday I taught an acting class; one student, wheelchair-bound, was accompanied by his father who took notes, gave physical aid and emotional support. Parents who are "awarded" the responsibility of a child with a disability, whether physical or mental, face many of the same challenges. These parents will not be able to look ahead to the day when their child is totally independent. There is no clearly defined light at the end of any parenting tunnel ...but when your child is disabled, that light is dimmed even more.

Still, the love is evident.

My child, who is 27, can at least walk by himself; he can, when balanced by his treatment, do many things without me. Sure, we still drive him to saxophone lessons, supplement his meager income, take him grocery shopping. He may never be totally on his own. But there is much to be grateful for.

A terrific novel, exploring the family role when there is disability, is Jodi Picoult's Handle with Care. Love is complex, unpredictable, immenseley valuable, and not always easy.

Beyond Trauma

I had the pleasure of presenting with Linda Appleman Shapiro, author of Four Rooms, Upstairs: A Psychotherapist's Journey Into and Beyond Her Mother's Mental Illness, last week at the library in Ridgefield, CT. Each time I tell Ben's (and our family's) story, I see at least one face in the audience that seems to open with relief: Can we really talk about these secrets? Is mental illness really not the source of shame I've been assuming it is?

Yes, let's talk. A mental illness is just that: an illness. It is no one's fault. It just is.

Great books for practical advice:
When Someone You Love Has a Mental Illness by Rebecca Woolis
I'm Not Sick, I Don't Need Help - Xavier Amador - great info, "system" doesn't always work, but helps understanding greatly
and - believe it or not, for basics - there are "dummies" books for schizophrenia, bipolar, etc.

What familes need:
Support
Education
Acceptance (Letting Go)
Reality check, Respect, Resilience
Communication
Hope - and, yes, Humor

It spells SEARCH.
My son Ben is living a very worthwhile life, filled with love, even with paranoid schizophrenia. Even so, my expectations have changed. It is a new normal. R for reality...

Bride's Best Man

My children gave me away this summer – I got remarried. At toasting time, my daughter Ali got so emotional she couldn’t finish her speech, so her big brother Ben put his arm around her, gently took the microphone, and finished for her. He began with, “First of all, Mom, you look so beautiful tonight”, and the entire room burst out in applause. Ben’s toast was one of our favorite memories from the wedding, especially because he rescued his sister when she couldn’t go on.

Ben is not “supposed to” care about others. He has paranoid schizophrenia. But he does. He is full of love, and we are grateful for his presence. Our family lives in the moment; there are, thankfully, many moments to treasure. We know, all too well, that tomorrow could bring change. Still, we have found hope and love that we once thought might be lost forever.

I am so grateful. There was a time I never imagined I'd have such a gift; there was a time, way before that, when I took its possibility for granted.

insight?

So yesterday Ben was visiting for the weekend (we went to see two outdoor theatre productions, which he loves - and I think he followed the plot of Much Ado About Nothing better than my fiance and I did...), and he told me that he'd been talking to another person who lives in supported housing with med supervision, etc. He said - and I quote - "He's diagnosed with schizophrenia, too." - WHOA! Milestone. Ben seldom acknowledges his diagnosis, and I"ve learned not to bring it up.

I simply said something like, "Oh- that's interesting", but inside I was heartened. One more baby step. If I don't push, if I let the journey be his journey, if I keep the right combination of letting go and encouraging progress, hope lives.

This morning there is an article in the paper from the AP, "Scientists try to stop schizophrenia in its tracks". Schizophrenia's prodrome - validation for need of early detection. http://news.yahoo.com/s/ap/20090726/ap_on_he_me/us_med_stopping_schizophrenia

Dean's List

If anyone had told me, 5 years ago, that my son Ben would return to college, earn and A and a B - to make the Dean's List! - and would be well enough to drive me to work as I recover from hip replacement surgery, I'd have been both doubtful and grateful. Grateful for the hope and faith, doubtful because it would have seemed like such a pipe dream. Even now I know it's best to stay in the moment; really, the only way to approach happiness of any sort. Feel it, appreciate it, live in that happiness. Don't think about what the success may predict; just know that there is success.

Ben, who began this semester by refusing his meds - afraid to succeed? - finished with the best results since eighth grade. There is hope; there is a maturation process, there is recovery, no matter how slowly it progresses.

I am SO proud of Ben!

Daring to Hope

As Ben grows, and grows up (he will be 27 next week), it seems increasingly clear that his maturation process is in slow motion - but that it is happening, however slowly. This gives me hope, and great joy - as long as I remember to stay in, and enjoy, the present.

The Medicare issue seems to be resolved for now - a few calls and one visit to the Social Security office, where even the caseworker struggled to understand the government language of the letters I've received as Ben's conservator. I felt much better, and less stupid, after witnessing that.

Ben has called me three times this week with good news. Twice to tell me about good grades for his school assignments (!!!), and once to tell me he has a job interview on Saturday, which his job coach will help him prepare for. Yes, there was another call with another agenda - he and a night staff person in his group home are butting heads, and it's frustrating for him; but all in all, the good news calls outweighed the calls for help, and that's a miracle I'm savoring. I do think Ben is showing amazing progress, especially now that he's been on his medication more consistently, and out of the hospital for a few years. Could his brain cells be in repair mode, as research suggests?

If the other shoe falls - and family members of people with mental illness live with that, always- I know we'll handle it somehow. Meanwhile, I'm choosing to be happy! And to notice that Ben is showing signs of maturity that I prayed for while he was in high school, in what I now know was the early stage of his illness. He's doing his homework! He's even earning extra credit. He does not WANT to miss class.

So he's ten years behind in exhibiting these signs. Ten years behind kids who are luckier than he was - lucky enough to have unimpaired brain chemistry. This is still progress -and I'm so proud of him. Let this be a sign of hope to parents who are still lost in despair. There is hope. Patience. Do your best, and savor the good moments. With luck, there will be more of them ahead.

Ask about Ben Behind His Voices: One Family's Journey through Schizophrenia to a New Normal
contact Claire Gerus, cgerus@comcast.net, literary representation.

Medicare premiums stopped?

The notice comes from Social Security, informing me that "The State" will no longer pay for Ben's Medicare - as of two months ago? No reason given. What? What does this mean? Is he without Medical Insurance then? He has no income, and is trying so hard to get his life back. For the first time in three years, he's in school and actually loves it - doing his assignments, taking the bus every Tuesday and Thursday. His benefits add up to under $900 a month, from SSI, SSDI and a housing supplement. All this to pay room, board, bus fare - with about $25 left each week for all other expenses (including buying lunch at school). He cannot possibly afford to pay for his own Medicare. What gives?

So I call Ben's caseworker at his house, who is sympathetic but doesn't understand what's going on either. The house manager says "I'm clinical, not legal", so he doesn't fully understand the benefit system. I call Social Security, who says to call the State. The State operator sends me to an extension where there is no voice mail and rings 20 times; I call back and ask the receptionist for help. Someone has got to know something. She takes pity on me and looks up Ben's info; evidently a Mr. Banner closed Ben's case in 2007. What?!?! I call Mr. Banner and leave a message. I call my lawyer, whom I can no longer afford to pay, in a panic. What does this mean?

Finally Mr. Banner calls me back and is nicer than I expected. He says Ben needs an EMB, I ask what that is, but he doesn't really know what it stands for. Social Security has to make the determination as to whether Ben is qualified to get Medicare. He sends the EMB. I call Social Security, and speak to another actual human. She tells me this should all be straightened out soon, but since the SS office is two months behind, Ben's premiums will continue to come out of his benefit check for another two months, and then he will be reimbursed.

I call Harrison House, where Ben resides. I think we have this straightened out. But no one seems to know how this occured in the first place. My lawyer returns my call and says she's glad I was able to get this straightened out. Me, too - if it is.

What do consumers with a mental illness do if they have no mother to chase down the answers with phone call after phone call? If six mentally healthy adults can't figure it out, don't know where to turn, how does the system work for someone whose mental capacity is compromised by more than just a ridiculously complicated system? No wonder homelessness seems like a simpler option.

I'm so grateful Ben has people on his side, including me. I'm so grateful.

grades

Ben texted me today, with the usual message: "Call me when you get this." Often, this causes my anxiety level to rise - what could be wrong now?" . This time, Ben added "I have good news for you." The news? He got an 85 on his first acting assignment! Wow. Wow. I am happy today. So is Ben. Staying in the moment, always a goal. But I'm so glad about any day that brings news like this. Also, listening to a taped "Psych 101" course, learned that over half of the people with schizophrenia are also addicted to drugs...and Ben has been clean 5 1/2 years. He has so much courage. I must never take that for granted.

Amazing conversation

Ben called me last week to tell me that he had delivered his first assigned speech in "Public Speaking 101" class - he chose an autobiographical theme "My Mission in Life", and his is - poetry. According to Ben, he got two pieces of negative feedback from classmates to work on: saying "um" and looking at his notes too much. the rest of the comments were positive!....one was "You're so emotionally expressive." Oh my God, if they only knew. The classmates have no idea Ben has schizophrenia; for him to be emotionally expressive, in this constructive way (i.e. not psychotic) is amazing. Truly amazing.

Oh - and he has started doing push-ups. Cute girls in class, he says. I sent him a text to ask if his muscles were still sore. the reply: "very much so. but I am not giving up!" So far in school, so good. The only way to stay with this: enjoy the moment. How wonderful it is, though.

saved!

Ben is taking his meds again. thank goodness. Dodged another one. I know how much he wants to be "normal" now that he will be taking classes with peers. Will he ever realize that the meds are helping him to be more "normal" than he could ever be without them, because they keep him balanced enough to remain out of the hospital, off the psych ward?

I can't know the answer to that. I'm just glad he's back. It's a good day.

setback

I knew it. Got the call today that Ben refused his meds last night. He said they make him too tired (well, they do) and he wants to try something else. What? After three years staying out of the hospital? Rerun. Trouble is, there is no other medication that works for Ben. Clozaril is the only one that makes his progress even possible. I think school - the idea of success,maybe - is too much stress for him. I've been on this roller coaster before. There's that fine balance, always: expectations low, but not too low. Challenge and promise for Ben, but not too much.

college admission, and new research

News came in Google alerts today: "Schizophrenia may blur the boundary between internal and external realities by overactivating and hyper-connecting a brain system that is involved in self-reflection, and thus causing an exaggerated focus on self, a new MIT and Harvard brain imaging study has found." This is a new research finding, and it could explain a lot about Ben and his difficulty in seeing outside of himself. He tries, though - oh, how he tries to act as if he is interested in others. He hugs us, says he loves us, goes through the motions - and, sometimes, I even see the spark in his eyes that used to be there, like a candle struggling to remain lit. I know that he experiences and expresses love as much as his illness will allow. I also know, for sure, that he feels the love from his family and that it is essential to his recovery.

This afternoon we went to the local community college; Ben wants to sign up for classes again. I am both proud and worried about this. He was so sweet - introduced himself to everyone from the advisors and the bursar to the bookstore security guards and shook hands all around. He seems so happy to be going back to school. And yet -there was more than his usual amount of retreating inside of himself. I caught him muttering to himself a few times, or wearing that cagey expression on his face that says he doesn't quite trust the world. When I looked at him, he snapped immediately out of it.He kept saying "Thanks so much Mom. This is great!" What choice is there but to support this, his plan to take six credits and get good grades? I can only hope. I want to threaten him, to make sure that he knows not to blow it. This nagging, I know on a deeper level, will not help. But it's really hard to keep my mouth shut. Ben had initially decided to take only three credits, which seemed much more manageable to me. But it's his life - especially after I fill out the financial aid forms for him, so he can pay the tuition. I've laid out the money, but am going deeper and deeper in credit card debt trying to supplement his meager income from social security. I am more than broke. Where are the caseworkers to help him with these forms? What would happen to Ben if he had no mother around?

Do I do too much for him? I don't think so. He lives in a group home where his benefits cover room and board with $20 a week in spending money left over. I help out by paying for the dentist, supplementing his food with a $100 budget each month (he shops and keeps track), and getting him cartons of cigarettes. Beyond that, Ben has to budget his money. It doesn't go very far. He's working on getting a job, with an employment coach. That's in his lap. His life is in his own lap, and I can't let it break my heart that he has so little in the eyes of the world. Ben is almost 27 years old, and his friends from high school passed him by long ago on the standard paths. This is Ben's journey, not mine.

Ben wants so much to be normal. Will his illness let him have this dream? Will the stress of college be too much for him? Will he wind up overwhelmed, and escape with a psychotic episode like last time? Or will he be uplifted by this chance to rise to the occasion? Will he make some new friends at school? Will he ever get to the point where he accepts what has happened to him, so others he meets can accept and understand it as well?

Classes begin next week. Stay in the moment. I'm proud he has come far enough to try this.

Ask about Ben Behind His Voices: One Family's Journey through Schizophrenia to a New Normal.
contact Claire Gerus, literary representation.

The letter from Ben, my holiday gift in many ways

This month marks over three years since Ben was last hospitalized. I remain grateful for every day that he is with us, enjoying his family's love. It wasn't always like this. There were times he looked at us with such suspicion that I was afraid to be near him; yet, underneath the chest-tightening discomfort there was always my love for this boy/man, my beautiful child. My mantra has become, "It is what it is" - yes, Ben has changed but he is still here, still worth loving, still with potential to keep recovering.

He has no money, except what may remain from his meager social security payments after group home deductions for room and board. The holidays of 2008 are over, and I have in my possession Ben's amazing gift: he wrote me a letter, handwritten in red ink on a piece of loose-leaf paper. Not fancy, but I know how much care went into it - I know this because I can read his handwriting!

This is what Ben wrote: 1/1/09
A list of my favorite things about you
10. You are always interested in a good conversation.
9. You are fun to be with
8. You have an excellent sense of humor.
7. You unconditionally care for me.
6. You respect my privacy.
5. You can guide me towards being a good person without pushing.
4. You have faith in me; that I can do what I set my mind to.
3. You raised me AWESOMELY - I like how, since I didn't grow up with a father, you made sure there were men in my life.
2. Whenever I need help, you're always there.
1. You love me.

I just want you to know that I think you're great, and not only that, but a great Mom too. You do a lot of things for me that you don't have to, and I really appreciate and respect that. I like that we hang out so much (you are a fun movie buddy), and back when I was using (pot) we wouldn't have been. You taught me a sense of family (not just you), which is something I lost when I was using. Thanks for being a good teacher and a great mother.
Happy Hanukah, Ben

Ben is 26 years old. In 2003, he was hospitalized for psychosis five times, in 2005, twice more. His family's love is a huge part of his recovery - and, of course, so is his medication compliance. The story of Ben's breakdown and recovery, and the family's journey to acceptance, is in my memoir Ben Behind His Voices: One Family's Journey through Schizophrenia to a New Normal. E-mail Claire Gerus, at cgerus@comcast.net for more information. Meanwhile, feel free to comment here as I continue to blog Ben's progress.

No Casseroles for Schizophrenia

If you are dealing with a mental illness in your family, this blog's for you.
My memoir, Ben Behind His Voices:One Family's Journey through Schizophrenia to a New Normal (formerly titled No Casseroles for Schizophrenia) is represented by Claire Gerus, cgerus@comcast.net. I am a NAMI Family-to-Family teacher and trainer in Connecticut, and professional speaker. My son, Ben, is 26 years old and was diagnosed with a severe case of paranoid schizophrenia about 5 years ago, after many years of confusion for our family during the gradual onset phase. The purpose of the book is to (a) tell the story of Ben's onset, crisis and recovery - especially recovery. All is not lost. Ben's life is worth living, he is worth loving; (b) get the subject - and stigma - out of the closet and into the open air where it can be discussed and, eventually, accepted; (c) provide hope, and some guidelines, for families; (d) educate providers as to what the family experiences when mental illness strikes - increase empathy and respect for the family as well as the person who has the illness. Oh, yes, and attract the right publisher to my literary agent, who believes in this book as much as I do.
Randye Kaye, rep. by Claire Gerus,
cgerus@comcast.net.