Ben Behind His Voices Blog
One Family’s Journey from the Chaos of Schizophrenia to Hope
NEW!– the Ben Behind His Voices audiobook has been updated with a new intro, epilogue, and bonus material! – available only in audiobook form. (updated 2022)
Hear all of the original award-nominated memoir, and find out what has happened in the decade since. We continue our journey through crisis, help, and into hope.
Growing Up Too Fast: When Your Parent has Serious Mental Illness
Our podcast, Schizophrenia: 3 Moms in the Trenches , continues - and to listeners who asked us, "what about the children raised by parents with SMI?" - we heard you.
This episode (42) is for you!
Guests: Karen Comba, author of The Snipers We Couldn't See: A Memoir of Growing Up with My Mother's Schizophrenia
And Christina Lord, mental health advocate (Canada) daughter of a dad with SZ,
First, your stories.
How has the experience impacted you (Karen writes about life “with footprints on her back”)
How did writing or sharing about it help? Or did it?
How did your experience- and the unpacking of it - inform the work you now do?
What do you most want other children of parents with SZ to know?
What do you want others to know - teachers, practitioners, other adults in a child-of’s life?
How to find happier places for your mind?
Links:
https://christinalord.ca/
https://www.karencomba.com/
Books we mention: (besides our own, Ben Behind His Voices, He Came In With It, and Fix what You Can)
She's Not Herself, by Linda Appleman Shapiro (formerly published as Four Rooms Upstairs)
I'm Not Alone: A Teen's Guide to Living with a Parent Who Has a Mental Illness, by Michelle D. Sherman
Daring to Hope Again: Faith or Foolishness?
The game of Schizophrenia Recovery Chutes and Ladders (or Snakes and Ladders, for you Brits) continues.
In the past few weeks, Ben has climbed some ladders, made some progress. Yesterday's family visit was full of simple pleasures again:
a car ride that was full of conversation, not the torture of awkward silence and small talk
Ben and a friends watched a movie in our living room and actually made it through the whole thing
We talked about his future, his feelings, his sobriety journey (now counting again, 15 days)
Ben was less defensive, more forthcoming
I brought up my concerns about his current med (Haldol) and my wish that someday he might try Clozaril again so as to avoid the side effects (tardive dyskinesia, mainly) of the Haldol - and Ben seemed to listen. (not agree, but he did listen)
These days are miracles. These days give me hope, though I've learned not to predict beyond a good day.I don't predict. But I can hope.
I can hope that Ben will continue to value his sobriety and the meetings that help him.
I can hope that the side effects of the Haldol are not permanent.
I can hope that he can again be a part of family celebrations.
I can hope that, perhaps, one day, he will gain insight into his illness and serve as an inspiration to others.
I can hope that he will, again, be able to work, to have friends, to feel purpose and joy.
I can hope for a cure for schizophrenia.
Hope is not foolishness. Hope is a celebration.
If I'm wrong, at least I'll have had a day of seeing my son's smile again, or actually enjoying talking with him, of seeing that he might be able to get some of his life back.
And that I can't do it for him. All I can do is love him (always), set limits (whenever I have to), and do the behind-the-scenes advocacy that is necessary to keep him afloat.
(where are his social security benefits? Does he have money to pay his rent? Can he work again someday? Where? How? Are there activities he can participate in right now, to give him the structure and purpose he lost when he lost his job due to Covid and then turned to smoking weed instead? ....the list goes on. We orchestrate behind the scenes.)
A good day. I'll take it.
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.
Schizophrenia and the Family: Exhausted, Broke, Helpless and Blamed
It isn't easy, loving someone with schizophrenia.
Well, let me rephrase: Loving is easy. Loving is in our soul.
Liking? Sometimes much harder.
Caring for? Protecting? Supporting? Very very hard.
Families who have not abandoned their loved ones with schizophrenia (and many, unsupported and at the ends of their ropes, feel they have no other choice) are left holding so many loose ends it's easy to feel hopelessly tangled up all the time. And that's on a good day. On a bad day? We live in fear.
We fear - for our loved one's life, sometimes for our own lives. And it often feels like there is nowhere to turn.
As for us - well, as of this writing, we're still one of the lucky families. After eight hospitalizations, after seven years in a group home, after homelessness and arrests, our son Ben is back home with us and stable on medication. Well, for today at least. We take it a day at a time, and each day we get that passes without major crisis feels like a gift - a gift that could get ripped away at any time.
I often speak to groups about the Four Pillars of Recovery Success that have enabled Ben to rebuild his life after his periods of psychiatric care: Treatment, Purpose, Structure and Love. Yep: he has a job right now, and a free place to live (with us), and a social life. Yay. I know what a miracle that is. But, as I've written before, that success is precarious. If one of those pillars should crack, we could be back at Ground Zero in the blink of an eye.
Still one of my most popular posts, here and on HealthyPlace.com , is this one:
Schizophrenia and Parenting: Step In or Let Go?
Though six years have passed since I wrote it, it still gets comments. And in those comments I am reminded of the deep, mournful, and sometimes terrifying challenges families - and parents specifically - face when schizophrenia moves in.
Here at our home, we face a relapse within 36 hours if Ben refuses to take his meds. I am prepared at any moment to call the police, kick him out, make him homeless, take his car keys away - and possibly face unpredictable consequences if we have to do that - for no family can know what the voices might tell their relative to do. That is our reality. And so we make sure, every single friggin' night, that he takes his medication and doesn't spit it back out. I hate this. It is hard on our freedom, on our work life, on our marriage.
And yet - we love him. So we do it. Because, even though Ben looks at us like we are the enemy during "meds time" - we know that with treatment he has been able to hold down a job, drive a car, play with his baby niece, help a friend. And that without it - handcuffs, ambulance, hospital, and worse. We've seen it way too many times.
Other families are not so lucky. And tomorrow, we might not be either.
Every day, we face the possibility that Ben might refuse his meds, and the actions we must take if he doesn't.
But wait, there's more.
There is literally no place for him to go if we have to remove him from our home. Some work success (precarious tho it is) meant that he lost his Social Security support and some medical coverage.
What if his car is repossessed? It is leased ( he did this without our knowledge) - so guess who helps with payments when he can't do it? (Like when he recently lost his job due to a restaurant closure and can only find work 2 days a week).
What if he gets sick? What if we lose coverage for his meds?
What if something happens to us?
Yes, we know we are lucky right now. Ben's schizophrenia is a severe case, and we are lucky he responds both to the medications, and to our house rules that he must take them. I know many families who would love to have such "problems" - as their loved ones are either homeless, in jail, in danger...or no longer here.
My friend, Laura Pogliano, was a "Fortunate Mother" too, as noted in USA Today. Her son Zac, took his meds, called schizophrenia a "rip-off" but was rebuilding his life too. Like my Ben, Zac wanted independence as the next step - and Laura helped him get to that goal . Like us, her family walked that fine line between stepping in and letting go. But. in his own apartment, Zac passed away in his sleep, possibly due to the heart problems caused by his medications. She mourns him still - and devotes her life to the rest of her family - and to advocacy with Parents For Care.
But so many - too many - families are living in a world of real fear. Note some of these most recent comments in the HealthyPlace post mentioned earlier:
Now (my son) is out (of the hospital) and has made it clear he still sees me as a dangerous person. I’m terrified that if this delusion is part of his “narrative” that he isn’t able to separate from, that I’ve lost my son and won’t be able to get him back. Our relationship had become remarkable strong since he grew into adulthood and counted him not only as my son but as a friend who I enjoyed spending time with. Now suddenly in a matter of weeks our relationship is shipwrecked and I am, in his eyes, some dark mastermind with a network of spies.
Its an impossible situation and I’m heartbroken at the thought of us becoming estranged over this - Dubya, Feb 2017
I am at a complete loss. I am watching my 20 year old son suffer in jail in a very psychotic state. I feel like he is going to die waiting for a state hospital bed. I am in unbearable pain for him. - Carrie, Feb 2017
My daughter’s violent behavior at times is so disturbing. Like so many others she won’t stay on her meds which causes everyday to be unpredictable. Caseworkes always find her extremely difficult to deal which makes it hard to get any help... Living with her is to the point where i feel I can’t take it anymore… - Carol, 2017
I just finished Googling “how to deal with an older brother with schizophrenia”… I read something about cutting ties eventually for the sake of my own mental health. I also read about putting him in 24/7 care group homes but what if he doesn’t want that? I don’t know what to do. Do I even have an older brother? Does that make sense? When am I speaking to my brother? When am I speaking to the schizophrenia. - Someone from Minnesota, Feb 2017
I’m afraid to be alone in the house with him. He sees a psychiatrist and a therapist once a week, has a therapist come to the house, takes meds (tenuously), but nothing has helped. He’s still aggressive, abusive, isolated, paranoid, delusional, and irrational. He’s threatened us verbally and brandished a knife on several occasions. I love him so much and I’m incredibly sad for him. He talks about suicide almost daily. He is just suffering, always fearful, always sad and miserable. - Antionette, Feb. 2017
Sadly, these are but a handful of comments - from last month alone. All over the nation, families are left to deal with mental illness alone. Where can they turn? What can we do? what can they do?
This situation demands attention from legislators, researchers, and the judicial system. Families living with mental illness need help - this cannot be swept under the rug.
Another Mom's Story of Schizophrenia in Her Son - and Suicide
Book Review: Losing Aaron
I keep thinking of the line in a Phil Ochs (google him:) ) song:
There but for fortune go you or I...
This book is a painful reminder of how fortunate we are to have gotten some extra time with Ben - and of how schizophrenia can happen to any family - rich, poor, educated or not, you name the adjectives. Schizophrenia does not discriminate.
Every family member with courage to share their story about mental illness in a loved one opens the door of understanding just a bit more - and that can help reduce stigma and spark action to help those with mental illness and their families. The author begins with the fact of Aaron's suicide, so we know where this is headed and yet we still root for Aaron - and his Mom, Dad, sister and stepdad - to get the support, education, and understanding needed to change the outcome we know is inevitable.
Alas, that doesn't happen - but Ingrid Blaufarb Hughes opens her heart to us as we share in her confusion, frustration and helplessness in the face of a devastating illness that seems to steal the soul of someone you love.
The pearl in the oyster here is the love the family has for Aaron, and how they do their best to support him in the only ways they know how, even though he consistently refuses the medication that might have changed his life.
I know that love well, as it is what keeps our family going too - and we know we are fortunate that my son Ben follows the "house rules" of taking his medication each day, under our supervision. Any day he could choose not to (as he, like Aaron, doesn't think he needs it) - and we have seen too many times where that would lead us: straight to the hospital, and down the chute to square one again. This book renewed my gratitude for the extra days we have gotten with Ben - days that this author's family was denied. Her pain and love, and her struggle to also live her own life as writer, wife and mother - are honestly told.
It also reminds us of the importance of education, support and acceptance - the earlier the better. Could Aaron have been saved? I don't know. But I know I am so grateful (thank you, NAMI Family-to-Family) for education I got into Ben's illness, which equipped our family to do more to help. It doesn't always "work", but education increases the odds of success.
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.
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.
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."
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.
Chris Harper Mercer: A Preventable Tragedy?
Another merciless, senseless shooting, this time in Oregon. Another troubled shooter with three names. As details of the life of Chris Harper Mercer emerge on news outlets, I expect, sooner or later, to find out what often is uncovered: undiagnosed and/or untreated mental illness symptoms. Duh. And a family left trying to "handle it" alone. Duh, again. Been there - am there. Except we got some education and support so we could try to help our son. We are among the very lucky families. At the moment.
As mother to a young man who has been diagnosed, and is (reluctantly but consistently) in treatment for a mental illness (schizophrenia), my heart goes out not only to victims and their families, but also to the family of this latest shooter. His father, Ian Mercer, of Tarzana, California, told KTLA on Thursday night: "I am just as shocked as anybody at what happened today".
Once again, the system closed its eyes to the need for support and left a family alone to cope.
Chris Harper Mercer was also, according to a NY Times article, close to his mother, with whom he lived. She reportedly had asked neighbors to help her get her apartment exterminated for roaches that bothered her son, who was "dealing with some mental issues." How else was she trying to help him? Or, like so many other stigmatized families with a "troubled" relative, did she just hope she could keep the situation quiet and keep things under control?
She obviously could not. Neither could Adam Lanza's mother, Nancy Lanza, in Newtown CT. Once your child is a legal adult, the very few rights you had as a guardian disappear completely. But the problem does not. And tragedy, as we have seen way too many times, can result. Though this kind of violence is NOT the norm for those with mental illness, it is the most publicized result of the neglect of our system toward the 1 in 4 families left to cope with mental illness alone.
When will we ever learn?
When will we pay attention to warning signs?
When will we open our eyes to the need for treatment, and put a system in place to help the families left to "figure it out" themselves?
We are one of those families. For the past four years, Ben has lived with us, because the system failed to realistically help him stay in treatment and rebuild his life. The minute he started to succeed, budget cuts took away services he supposedly "no longer needed." That is like stopping chemotherapy halfway through, with no follow-up.
We are Ben's family and we love him. So much so, that we're willing to let him "hate" us during the two most uncomfortable moments of the day: times to take medication that he does not believe he needs. We stay up late to supervise when he gets home from his job, often between 1 and 3 AM. There are nights when I can barely stay awake, and cannot relax until the meds are safely swallowed and absorbed.
But it's worth it. The stability of consistent treatment has helped Ben to rebuild his life. He has a job, friends, and a car and credit card in his name (!). He is starting to feel like he has a life he's proud of. But he hates those two times a day...and I have no doubt that, were we not there, he would stop treatment immediately. He has his reasons, one of which is he wants to take full credit for his "better decisions" lately. He does NOT want to hear that his good track record "seems to coincide" with times he takes his medications.
He melts down every so often, accuses us of controlling his life, of mistakenly labeling him "insane" (his word, never mine). He then says he wants to stop taking medication -with the best of intentions to keep succeeding, of course - but we have seen, eight times, what happens when treatment stops. It's not pretty. Hallucinations. Withdrawal. Resistance. Mania. Police. Ambulances. Sometimes handcuffs. Hospitals. Work, school, money, friends - all can be lost so quickly . So we let him hate us, twice a day.
Ben has never been violent - for that we are so grateful. He hates guns, and loves people. So, no, I don't fear he would become a shooter. But I do fear for his life, and his future. If we should stop managing his treatment (someday he might simply refuse, or we might be away, and - let's face it- parents do die eventually...) where would he go? How could he function? Would his "case management team" even have an idea what is going on? Would he get in his car and drive in a distracted state?
Every family dealing with mental illness lives on a tightrope, with an anvil suspended overhead ready to fall - because there IS NO SUPPORT.
We cannot close our eyes to the people who live with mental illness. We cannot sell them guns. We cannot deny them treatment - not just medical treatment, but services and support. We cannot play ostrich and "hope things get magically better."
According to a guest commentary, Treatment Advocacy Center, "The number of psychiatric beds in the US has been reduced in the last 50 years from about 650,000 to about 65,000—about equivalent to the number of mentally ill that wound up on the streets or in prison."
Or living with their frightened, hopeful, families. Attention must be paid.
One Reader Speaks: Siblings, Schizophrenia, Support, Strength
Sometimes I open an e-mail from a reader that not only touches me, but teaches me...and these words, from the sibling of a man with schizophrenia, are in my heart forever. The author has granted permission to reprint his words here, for which I am so grateful - and hope you will feel the same way. I have changed the first names, and added some links, but otherwise this is, verbatim, what has re-inspired me today to continue to seek, and see, the strength courage and beauty in my son Ben. Thank you.
Dear Randye,
I am writing to thank you for your strong and beautiful book Ben Behind His Voices. I did not want to read it. I borrowed it from a friend almost two years ago and have been walking past it since then. And I can’t exactly say it was light reading once I cracked it open. Ben’s story is so much like my brother John’s. But, with John now 54 and myself 58, it was high time to rewalk the path and get some new perspective. I simply cannot thank you enough for your clear and detailed depiction of your family’s journey.You do an especially fine job of explaining that tension between trying to help and trying to let be. Also, you truly help readers understand that realization that for a person with schizophrenia, life dreams and plans will need to undergo revision. As Robert Frost’s poem “The Ovenbird” reminds us, the question that needs continually to be asked, about all our lives, is, “What to make of a diminished thing?” One could view the question as pessimistic, but to ask it honestly is actually an exercise in wisdom and courage.
Even though John cannot “compete” for standard definitions of success, he puts most of us to shame in a few specific areas. One is courage. A few Aprils ago I remarked to him on the phone what a gorgeous spring day it had been. He said yes, that he had been out too. He said that he had forced himself to let the bus home go on without him so he could sit out on a bench until the next bus came. “It was hard,” he said, “but I did it.” It was hard? To sit on a bench for 30 minutes on a beautiful spring day? It’s a reminder that, for John, facing the world most days takes the courage of a first responder running into a burning building. But as you so clearly point out, his heroism is not the type to garner honor, gratitude, or even acceptance.
Yet I could speak of HIS acceptance of others, his sensitivity to those who are suffering, his spontaneous generosity.
We talk on the phone a couple times a week. He lives about 90 minutes from me. Yesterday we spoke for about 20 minutes. With your words so fresh in my mind, I was somehow able to enjoy the conversation more deeply. It was one of those moments you talk about that should be cherished for the simple pleasure that it is. Your book did that for me.
I am saying a prayer for Ben.
I love hearing from you, dear readers. Thank you for your e-mails, your comments, and your advocacy - RK
NAMI Palm Beach Keynote - Support, Education, Acceptance
Keynote Speech for Annual Luncheon NAMI Palm Beach County, FL - a wonderful affiliate doing so much. This event raised thousands of dollars. Congrats!
The full version of this keynote is available on YouTube. Here, however, are just a few highlights:
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.
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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.
What's the Difference When Your Child's Illness is in the Brain? "Sympathy"
60 minutes recently did a segment on the plight of families dealing with mental illness. They interviewed many families and healthcare professionals in Connecticut, on how our system fails our Mentally Ill Youth in Crisis.
Virginia State Senator Creigh Deeds speaks out about how he was attacked by his son Gus, who suffered with schizophrenia. Virginia state senator Creigh Deeds suffered multiple stab wounds, and his 24-year-old son Gus died from an apparent self-inflicted gunshot in what police are considering an attempted murder-suicide.
Connecticut families, in the continued aftermath of the Newtown shootings, still face the same issues of lack of beds, a revolving-door mental health system, and lack of support and help.
How I wish they had interviewed me, too - but the stories of Deeds and the other families are heartbreakingly similar. Sadly, the story in my book is not unique. Many suffer the same issues we do, every day, without support or even understanding.
In the "overtime" segment about stigma, a group of families shares the effect of stigma on their experience, and how a broken leg can bring casseroles, while a mental illness can bring warning letters from the lawyers of your neighbors.
What's the difference, according to one of the parents interviewed? "Sympathy."
Watch the clip here: http://www.cbsnews.com/videos/nowhere-to-go-mentally-ill-youth-in-crisis
"Making Money Off My Son's Illness"? A response
This post started out quite differently.
I write another blog called Mental Illness in the Family, which appears on HealthyPlace.com, and though I usually keep these blogs separate from each other, I often wonder why.
Today's post on Healthy Place has to do with a topic I often - sadly - must revisit: relapse, or the return of symptoms. in it, I write:
I hate schizophrenia because it prevents Ben from moving ahead with his life. It gets in the way of every job he applies for, every friend he tries to make, every dream he has had so far of having a girlfriend, getting married, being a Dad. It forces him to be dependent on medication that he does not believe he needs. It puts him in a position that he knows is a drain on the family. Schizophrenia steals – even when treated to the best of current medicine’s abilities.
Schizophrenia has stolen joy from his eyes, clarity from his mind, possibilities from his future, depth from his
relationships, money from his wallet. He wishes for a car of his own, a job above minimum wage, a life that includes progress – but he seldom complains. His old high school buddy is now the dentist that fills his cavities. His little sister has accomplishments he may never see. Yet he is one of the nicest people you’ll ever meet.
Today, though, it may be hard to be around him. Today, Ben may spend his day sitting at the local Starbucks, the “weird kid always singing to the music in his headphones” sitting in the corner with one cup of coffee for hours (though he does tip well). I hate this. I hate the ticking time bomb, always in danger of being re-set, that is schizophrenia.
In placing links inside this post, I found I had a new review for the book on Amazon. Unfortunately (though I know that, despite mostly 5-star reviews, you can't please everyone) this reader wasn't too happy.
"WAS DISAPPOINTED WITH AUTHOR'S STORYI HAVE SUCH A SON ALSO...WITH MENATL ILLNESS.AFTER I READ THAT SHE WAS A CELEBRITY ... AND HALF OF THE BOOK IS TAKEN FROM THE NAMI SITEWHICH I ALREADY BELONG TO - SEEMED LIKE I ALREADY KNOW ALL THIS .. SHE IS JUST MAKING MONEY OFFOF HER SON'S ILLNESS."
Now, a big part of me knows not to even respond to a review like this. I also expect that the reader wished I had more answers for her, and that she is as frustrated with schizophrenia as we are.
But I feel I need to say four things in response:
I never claimed to have all the answers. I wish I did have them, believe me.
NAMI is clearly cited as the source for much of my information. Still, to my surprise, many families and professionals that I meet still have never heard of NAMI. So one of my goals for the book was to increase awareness of it. I'm glad you've already found that resource.
"Celebrity"? Wow. Simultaneously flattered - and puzzled. Does being in the public eye (to a rather small extent, in my eyes, otherwise I surely would have been invited to appear on Oprah...) mean that my son's suffering is any less real? Or my family's journey?
"Just making money off her son's illness"? To that I must say: Ha! Ha to that as my motivation, and Ha to that as an income source. I wrote this to increase awareness, refute stigma, inspire change, spark empathy, and to help other families not feel alone. I wrote it for Ben's courage, and his right to receive better treatment, a chance at a future, and the understanding of others.
Still, I do thank you for the three stars, and I wish you hope, support and love in your family's journey. I wish my book had been able to give you what you needed from it. Since we are in the same boat, dear reader, I know your road isn't easy.
Loving through mental illness: "It's like he disappears..."
Sometimes we say things, and they stick. Ever have someone repeat back to you something you said which touched them, even changed them, and you had no idea you'd said it? That's how interviews are sometimes.
Two years after Ben Behind His Voices was published, I still get the chance to spread the message of our story, and for that I am grateful. I feel like the book's journey has just begun, and though I plan an updated version sometime in the next year to include the latest developments, many tell me that the story is timeless to them, as it reflects where their family is right now in the mental illness journey - or where they hope to be. Others simply like its message of resilience, strength, and hope - regardless of the cause of the challenge.
Tomorrow night I look forward to a book-reading and Q/A at Plainville Public Library in CT.
Here is Lisa Capobianco's story about it in the Plainville Observer, including the quotes I'd forgotten I'd said - to which I added my own italics...
Author to share story of coping with son’s mental illness
November 8, 2013
By LISA CAPOBIANCO
STAFF WRITER
When national voice talent and actress Randye Kaye noticed her 15-year-old son Ben experiencing mood swings, frustration, and isolation, she thought he was going through a phase as a teenager. But as Ben transitioned into early adulthood, his symptoms worsened, and little did Kaye know that he was exhibiting symptoms of gradual on-set schizophrenia.“
This was beyond what I expected,” said Kaye, a former host of a morning radio talk show in Connecticut. “I did not know anything about it—I really had to learn and explore.”Schizophrenia affects 2.4 million American adults age 18 and older, according to the National Alliance on Mental Illness. NAMI reports that schizophrenia, marked by changes in brain chemistry and structure, may inhibit an individual’s ability to think clearly, to make decisions, and to manage emotions. Individuals with schizophrenia may also exhibit hallucinations as well as delusions, and may have a difficult time performing complex memory tasks.
For Ben, he began experiencing delusions at age 17 when he decided to drop out of high school without a realistic plan, and started smoking marijuana. Struggling to find help for Ben as doctors misdiagnosed her son’s illness, several years passed before finding the right medication. Ben was diagnosed with schizophrenia at the age of 20.
“I learned to have empathy for my son and how I could help him", said Kaye, who also serves as a teacher and advocate of NAMI. “When you lose a child to mental illness, it is like he disappears.”
From the time, Ben developed symptoms of gradual onset schizophrenia to the time he received treatment, Kaye said she struggled to support her family as a single parent with several jobs. When she quit her job as a radio station host, Kaye had time to reflect on her family’s experience, and decided to write an account of Ben’s battle with schizophrenia in her own book called, “Behind Ben’s Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope.” In her novel, Kaye said she provides a better understanding of mental illness and the people who struggle with it.Kaye will share her story with residents at Plainville Public Library, 56 East Main St., on Tuesday, Nov. 12, at 7 p.m., reading passages and answering questions. Through her story, Kaye said she hopes readers will gain a greater understanding of mental illness, and how to gain acceptance, resilience, and strength.Kaye also said she hopes not only to spread awareness, but also to break the silence among other families who may be struggling with a mental illness so they may become a sense of comfort for each other.“We need to understand that we are not alone—there is hope,” Kaye said.Kaye said her son, now 31 years of age, has developed stability in his life. Although he continues to take medication, Ben now takes college courses and holds a part-time job while starting a social life.“Parenting comes with adjusting your hopes and dreams,” Kaye said. “If your child develops a mental illness, you have to switch gears and still see what is good.”Kaye’s book will be available for purchase during the event, and is also available online at www.benbehindhisvoices.com.
Radio Interview: "We All Got Issues" Show
What's going on now? Why doesn't Ben "accept" his illness? What tips help families like ours to cope? Latest interview aired today, September 23, 2013:
What is life like with a family member who has schizophrenia? During this episode of the "We All Got Issues" show - schizophrenia is the ISSUE. Dr. Glenda interviews Randye Kaye, the mother of a son with schizophrenia. Randye is also the author of "Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope".
Here is the show - starting with the song "The Climb" setting the tone. Dr. Glenda Clare is an empathetic, knowledgeable interviewer.
New Caregiving Internet Radio with WeAllGotIssues on BlogTalkRadio
Family Trip to Maine, as Schizophrenia Develops: Flashback, 2001
Dear Reader:
The first draft of Ben Behind His Voices was a full 100 pages longer than the draft that eventually got published. Once in a while, I plan to post some of the "lost" passages that wound up on the writer's version of the cutting room floor.
This chapter describes a trip that I took with Ben and Ali, right after Ben returned from his period out West which began with great promise (and success at becoming pot-free), morphed into homelessness, and eventually got him back home for treatment. At this point in the story, we still didn't know for sure what kind of mental illness Ben had. Even now, we are the observers of symptoms, always watchful for their return, always hopeful they will not, or that they can be explained away by something other than the illness.
Here is what happened:
"We took a weekend trip to Maine, just the three of us, right after Ben had finished his summer at the day camp. But Ben was acting very strangely again.
He had his backpack with him, always. Forty pounds of spiral notebooks he just couldn’t leave behind – even if we were going to the beach, or walking near the sea cliffs.
He talked often, but not of ordinary things. His favorite topic that weekend was bragging to us about his “psychic powers.” Often, he looked at me or Ali and said “I know exactly what you’re thinking. I can read your mind.”
The first few times, we played along. He was never right, but would say that we were simply lying, that he must know more about what is in our minds than we did.
The three of us went to see a production of Joseph and the Amazing Technicolor Dreamcoat at the Ogunquit playhouse. Ben, however, often seemed distracted. We caught him “watching” the show with his eyes completely closed. He looked as if he were trying to go into a trance.
“What are you doing?” Ali asked him.
“I just enjoy the music better this way sometimes,” he said.
It was weird. It looked weird and it seemed weird. He seemed stoned – but there was no other evidence of that at all.
How many more days before we can go home?
And it was only a weekend vacation.
Ben spent the entire five-hour ride home talking. And talking. It was another non-stop monologue, mostly about his ideas and concepts. It seemed as if he simply could not turn off his brain.
We made it home, finally, and retreated to out quiet and separate corners. I was worried. Does Ben need to increase his dosage of his medication?
Have they suddenly stopped working?"
Amanda Bynes: Will She Become the Celebrity Face of Schizophrenia?
Amanda Bynes is in the news - again. But this time, much of the focus is on the possibility of a schizophrenia diagnosis. I mention this to Ben, and he says, "Hmmm. Interesting." This story will not, I suspect, make a dent in Ben's insight into his own illness - not now, at least. Patience is key when you love someone with schizophrenia - along with many other qualities.
But we follow the story, to see what the media does with it. I see Hollywood Gossip report she is on a "drug cocktail" and comment:
"I'm so glad to hear that Amanda is responding to medication (not "drugs"...these are medications to restore balance, not drugs to alter it). Yes, the big question is there: will she take the meds on her own? In my experience, probably not. Many medical reasons for that (see "anosognosia") but her parents should definitely go ahead with conservatorship. It has been a huge help for us! I blogged about this at healthyplace.com, website with great info and support."
My blogs on conservatorship have gotten the attention of Marketplace, a smart and fair show on NPR that is business-oriented, and they have invited me to be part of a show (coming up this week) on the topic of conservatorship, with Amanda in the news and all. This same issue came to light in when Britney Spears' parents sought to help their child after bizarre behaviors in public brought attention to her possible mental illness as well. At that time, I was booked to appear on Dr. Drew's HLN show, but got bumped by a Hurricane Irene story. This time, I hope I can be of some help on Marketplace, sharing the family view of how conservatorship can help.
I am Ben's conservator, but it doesn't mean I run his life, or control him. I am simply allowed to help him when he needs the help - and, yes, sometimes when he doesn't know he needs that help. (when schizophrenia symptoms take hold.) It's a safety net. And we need it.
Watch this blog for updates!
Why Be Open About Schizophrenia?
Let's talk about the question I get quite often, via reader e-mails, keynote Q & A, or sometimes in the form of a critical tweet or two accusing me of "exploiting" my son Ben by being open about out family's experience with his illness: schizophrenia.
Am I "Exploiting" my Son by Sharing Our Family Experience with Mental Illness?
No. Because Ben has graciously allowed me to speak.
First of all, Ben has given me permission to share our story, as long as I changed his first name, relay any messages he asks me to, but respect his privacy by not using adult photos or expecting him to go on the speaking circuit with me. These things, I have gladly done.
While not willing to talk about schizophrenia (or even, frankly, agree that the diagnosis is correct), Ben does realize that by speaking (from my point of view as parent), we may be helping other families to cope, understand, and sometimes come back together. So this is something we have done, together, each in our own way.
Why be open about mental illness?
To reduce stigma by increasing understanding.
This video, produced for the "Stand Up for Mental Health" campaign at Healthy Place, explains how "through stories, we get the human face of any condition" and "fight for:
Respect
Advocacy, and
Equality"
Please share, and check out the other videos there, if you know someone who may need to feel less alone.
Mental Illness Treatment Laws: Does Connecticut Lag Behind?
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.
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 Mental Illness Family Experience:More Reader Stories
Letters, we get letters....and each time it reinforces the fact that mental illness affects the whole family - and that many - too many - families are left to guess at proper treatment and cope alone, especially if their family member is a "legal adult."
at a recent NAMI conference, I spoke about the truth that underneath every "patient" is a valued person: (this link goes to a short youtube excerpt)
The Courage and Love of Families Dealing with Mental Illness
from a couple in Massachusetts:
I just finished reading your book and I say thank you. Our family has been on this journey for 12 years with our daughter. My wife and I read your story, cried, wiped tears and started again, shared in your triumphs and your challenges, laughed, recalled frantic moments, and on. We are members of NAMI, the F2F course many years ago saved us from bottoming out. We still fight every day for society to support this brain illness. I will hold onto your visions of Pride, Hope, and eternal love for your family. Thank you for speaking out and sharing your family with us.
from Laura in California:
First I would like to thank you for writing this awesome book. I have bought a few copies and am having extended family read it to help understand what our family is going thru. I am writing you because our son who is now almost 24 is diagnosed with schizophrenia...the real problem is at this age we want him to live independently from us. I am worried if anything were to happen to us he would be lost...Thank you so much again for writing this very important book.
from another Mom:
My husband and I both read your book Ben Behind his voices in four days we couldn't put it down you were telling my story with my son.I have both my sons mentally ill.
I have so many question I want to do what you did and help them get their lives back.
My older son unfortunately became violent I called the police one time ... he spent 4 months in jail/ Psychiatry, then he became homeless because he wouldn't go by the house rules and seeing a psychiatrist - let alone taking meds.
Both my sons had a breakdown in their sophomore year in college.
I would like to get my son off the street and get him help.Please help. I am also a member of NAMI.Thank you for the book you are a wonderful mother.
As you can see, the story in Ben Behind His Voices is not unique. Families are to often left to cope alone, and I am thrilled that we are, at least, beginning to reach out to each other. I'm honored our book is a part of that, but without you, wonderful reader, the story will only go so far. Thank you for commenting, connecting, sharing, recommending. I can't help but think that, even though the "newtown shooter" has not yet been proven to have had a mental illness, the situation would have very very different if his family had had education and support.