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.
The Refeathered Nest: Not So Empty. Not Just Us!
As we near the end of National Family Caregivers Month, I've been thinking about the less obvious form of caregiving: the fact that so many of our kids return to their old twin (or larger) beds in the family home, long after we'd imagined we'd have a nest empty enough to turn their old bedrooms into, say, a workout room. Ha.
Sure, my son Ben relies on us more than your neurotypical 30-year-old, because of the different life path affected by schizophrenia. But my other children, too, rely on us a lot more than I did my own parents when I was in my twenties. Financial help, washer-dryer privileges, family vacations. But this seems to be the norm.
Are your kids back at home after college too? Here is why: (thanks to Hannah Peters, and collegeathome.com)Just, sayin' : we are far from alone!
The Parents Network: Eyes, Ears, Heart and Soul
Yesterday I had the pleasure of swapping stories, issues and tips with Susan Schofield, Host of Bipolar Nation on LA Talk Radio, and her husband Michael, author of January First: A Child's Descent into Madness, and Her Father's Struggle to Save Her. (reviewed in my last post)
Sure,we were talking author-to-author, host-to-guest, but mostly we were talking parent-to-parent.
Here is the episode of the show where you can download or hear our conversation.
We need each other. I can't tell you how inspired, informed, and encouraged I have been by the hundreds of families I have met and shared with in the years since Ben's first symptoms. Some of these encounters have been at NAMI Meetings and Classes, some by e-mail, in media or live appearances, others in the pages of books.
Without you all, I don't know how we would have survived. Thank you - for the courage to speak up, the willingness to ask questions and fight, the empathy to reach out.
This is what I hope to give back to you in the pages of Ben Behind His Voices, and in meeting you too.
Together we can make a difference. My favorite cliche - because, like many cliches, it is true.
Touching Lives : Grateful for the Chance
Mental Health and Disability Issues Affect Us All
Last month, I had the opportunity to speak about to the wonderful folks at PPAL, the Parent/Profession Advocacy League ("The Massachusetts Family Voice for Children's Mental Health") at their annual conference. Our family story wasn't the only one presented; there were also two adults who had, as children, survived trauma and illness and abuse to come out stronger and smarter. Their stories inspired me, and I was challenges to honor their experiences by connecting our family's journey to theirs.
Courage is everywhere.
Support is essential. Sometimes the one right word, at the right time, can change a life.
My hope, always, when I speak about our family's "chaos to hope" with Ben's schizophrenia (and also in writing the book) is that some of our words will be those "right words" for someone else who may be listening to or reading them.
So happy, therefore, to have heard the following feedback from the fine folks at PPAL:
"96.3% of those who completed an evaluation stated they were, "very satisfied" with your information, preparation and understandability. In addition to the ratings, I thought you might like to read some of the written comments attendant to your presentation and I have listed them below.
o "excellent presentation"
o "she was very inspiring and incredible...have her come back again"
o "loved how she shared the journey of her son...realistic, well done"
o "empowering"
o "I loved her sense of humor"
o "outstanding speaker and presenter"
o "Very well spoken. I'm really happy to have heard her speak."
o "empowering/full of empathy"
o "awesome speaker" o "Very informative and inspirational."
Once again, please accept the sincere thanks from all of us at PPAL."
Thank you!! There is no speaking without a listener. My thanks for the opportunity to connect with all of you at PPAL and see the awesome work you do.
Stop and Twirl: Recognizing a Good Day
(Portions of this article first published as Stop and Twirl: Honoring Joyful Moments with Happiness on Technorati.)
Last month's travels were mostly for speaking engagements and book signings, but one destination was for VOICE 2012 (a voice -over conference), held at the Disneyland resort. One morning I walked through Downtown Disney, and watched excited families head toward the entrance of the Magic Kingdom.
One of the families had to stop abruptly as they made their way towards the magic. Why? Their little girl, dressed in her princess finery, simply had to stop and twirl, to express her joy and anticipation to the world - and also, I suspect, to feel the thrill of the swishing of her beautiful princess dress.
She was just too happy and excited to merely keep walking. She had to stop and feel the joy. And, by doing so, she marked that moment of happiness not only for herself but for all (including me) who saw her pure expression of happiness.
We all need to do that, I thought. Honor the happy moments, cement them in our memory banks, by taking that simple second to just notice how happy we are. And to share it if we can.
I just returned from Seattle, where I spoke at the NAMI National Convention. The five-day event included many stories of success, but also of heartbreak, frustration, confusion and loss.
The note on the fridge was from Ben.
Yay! I cooked the cauliflower! I added the mushrooms and tofu and used an Indian sauce mix! You can have some. It's in the fridge. Love, Ben
Simple, right? But after talking to so many families whose loved ones were refusing treatment, or whose treatment wasn't working, or who had lost a loved one to the prison system, homelessness, or suicide, that note stood out as a moment of joy to me in its easy simplicity.
Sure, a year ago Ben was in the middle of a relapse. Sure, it could happen again despite all we are doing to walk by his side with love, discipline and hope. Still, right now it's a good day. Ben is in treatment, purposeful, clean and sober, and even employed. He is in the bosom of our family (though he pays rent for his apartment that is so lonely he hates to be there), and even listened to my parting advice to cook and eat the vegetables.
Yes, indeed, a good day. The "other shoe" isn't falling today. So I am grateful. And I'm going to stop and twirl.
Diagnosis at last: Grief and Relief
It's Mental Health Awareness Day, and HealthyPlace.com (host of my Mental Illness In the Family Blog, and lots of great info, encouraged me to do a video post for the "blog party" -
So here it is - one minute about the "moment of truth" when a diagnosis is finally shared. So many emotions.
Resilience: Bouncing Back...Bolder
One of the letters in "SEARCH" - the acronym I created and present re what families need when mental illness strikes (or, really, we all need for most challenges) stands for:
R = Resilience
I wrote about resilience in an article about happiness called Bouncing Back Bolder -because the way we deal with setbacks can strengthen us. We all have them, of course - but sometimes the road when dealing with mental illness seems particularly full of detours and pitfalls.
So when I was asked to be a guest on Angel Tyree's radio show, Bouncing Back to Your Brilliance, I figured it was karma! Angel was a terrific, well-informed and empathetic host. You can hear the half-hour show here.
Here is an excerpt from the article, too:
Confession: I don’t really like lemonade all that much. And, I also think that lemons have their place in this world without being sweetened and liquefied: to balance the strong flavor of swordfish, add tang to a glass of water, keep apples from turning brown.
This much, though, I know is true: if life hands you lemons, and you choose to make lemonade, you have the supply the sugar yourself.
Mental Health Awareness Month, Mothers' Day, and Memoir Readers
May is days away - bringing both Mothers' Day and Mental Health Awareness Month. This has me thinking about wonderful readers who have taken the time to share their thoughts with me - and not only those who are affected by mental illness in their families (one in four families, btw- we are "the 25%"), but also those who see Ben Behind His Voices as, to quote the Library Journal review, "a darn good read for memoir fans."
Sure, I wrote the book to open eyes to the issues surrounding mental illness and the family, and to help others going through it - but under it all, it's also the story of a mother (and a sister) who refused to give up on someone they love. I don't have to have shoveled coal to appreciate Angela's Ashes. And I'm glad that many family members in "the 75%" not directly affected by mental illness in a loved one are still writing to say how much the story of family love and strength means to them.
Here are some recent comments. Thank you!!!
Randye Kaye has touched my heart with this book. It's not just about battling a disease, it's about a mother's love for her family and her relentless crusade to help her children to be the best that they can regardless of what obstacles in life are placed in their way. Randye brings you into her family circle and writes with such emotion that you feel that you are experiencing every high and low with her. It's a story of courage, of never giving up, of hope. It is a story of inspiration that leaves you feeling that although life does not always turn out the way you hope, it can be ok. This book is not just for families of children battling mental illness, it's for all parents who face different challenges with their children. I could not put the book down once I started it. Such an incredible story. I hope there is a sequel so we can see how Ben is coping a few years from now. Great book for all, I would highly recommend reading it. - ESM, latest customer review on Amazon
It isn't often that I spend a little more than a day finishing a book. I usually have 2 or 3 books going at once and I finish them as the spirit moves me...I was truly moved by your story. - MS, Chicago reader
What strikes me most about the story is the reserve of human endurance and the depths of love and resilience of the family...And Ben: how courageous he is and what it takes to manage the disorder comes through on the pages. Randye Kaye's resilience, determination and courage are inspiring to anyone who must go down this difficult road of schizophrenia or any other chronic illness...this is a painful situation and yet the reader is left hopeful because of the power of hope and love. It shows what it means to be human. - book club reader, Syracuse NY
What can you say about a book that chronicles the descent of a sweet child into mental illness? This is an excellent book, which everyone should read. Mental illness -- and especially schizophrenia -- is so stigmatized that people are afraid of those who are ill. It is sad to watch, with the author, as her sweet, bright son deteriorates before her eyes, and the years of seeking it took before someone correctly diagnosed his disease. And her reactions -- not wanting to be with him, but wanting to protect him; hating him while loving him; missing the beautiful child he once was -- are heartbreaking. I highly recommend this book. - Laura Nichols, Goodreads reviewer
A truly inspiring story of the struggle against mental illness has recently come to my attention. Written by the mother of an individual suffering from Schizophrenia, "Ben Behind His Voices" is a truly illuminating tale of one family's long term experience with the various trials and tribulations that go hand-in-hand with mental disorders. - from Max Ingram, blogger at Runic Realities:
CELEBRATE THE LIVES OF YOUTH TOUCHED BY MENTAL ILLNESS
COME AND CELEBRATE! I am thrilled to be one of the speakers at this event, but the real stars are the young adults touched by mental illness, and their art and writings. After that, I will meet and speak with member of Families Anonymous in Connecticut. Sharing is healing.
VOICES ART EXHIBIT SEEKS TO RAISE AWARENESS AND CELEBRATE THE LIVES OF YOUTH TOUCHED BY MENTAL ILLNESS
The National Alliance on Mental Illnesses of Connecticut (NAMI-CT) and Young Audiences of Connecticut/An Affiliate of VSA join hands to raise awareness and reduce the stigma associated with childhood onset mental illness through the art exhibit, Voices: The Art of Children, Adolescents and Young Adults Touched by Mental Illness. The exhibit features the work of more than 30 artists between the ages of 8-21, all of whom are either living with or are a family member of a young person living with a mental illness. The Voices exhibit will provide these courageous individuals a venue in which to express their feelings and a window into which others can gain access to their personal lived experience. Several of the youth will be present beside their artwork to share their story of how the illness has been a challenge, as well as an opportunity for personal growth and increased self-understanding.
The exhibit will take place from April 2-13th at the Legislative Office Building, 300 Capital Avenue in Hartford between the hours of 9 a.m.-5 p.m. Monday-Friday.
The Artist Reception will be held on Tuesday evening, April 3rd from 5-7 p.m. and will feature several speakers including Randye Kaye- actress and author of the book, Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope and Deborah Mendoza and Jana Pietrzyk- two Voices artists and inspiring advocates.
For additional information on either the Voices exhibit or reception, please contact Ann Nelson, NAMI-CT, at either 203-927-1541 or familyresearch@namict.org.
Art and Advocacy: When Worlds Intertwine
Like so many people I know, I have no short answer when people ask me, "So what do you do?". If given just a few words, I guess I can say "I talk and write for a living", or "I communicate professionally." But, really? I am a serious dabbler - and insatiably curious information-seeker and sharer.
Author, speaker, stage actress, singer, voice talent, audiobook narrator, advocate, TV/film/improvisation performer, drama teacher, Voiceover coach, NAMI educator, ADL diversity trainer, presentations coach,blogger, radio broadcaster, MC --and that's just my work life. You know what I mean - how many roles do you play in one day? My professional website home page even has four portals to explore. Still, it adds up somehow - like when the bills get paid - and even occasionally makes sense.
When I get the chance to speak to audiences about Ben Behind His Voices, it's a wonderful opportunity to marry a lot of these worlds. Here, in this clip from a recent library appearance in Trumbull, CT, you can hear an excerpt from the book as well as some thoughts on Ben's progress and why understanding and respect are so vital.
Many of these roles layered beautifully when I got the chance as voice talent to narrate the audiobook of Ben Behind His Voices. Strange to step out of the writer's shoes and slip on those of the narrator...oh, the urge to rewrite as I narrated! But I am thrilled that the end result was so beautifully produced by Spoken Word Inc, received starred reviews, and that we were nominated as "among the best of the best" for Publishers Weekly's 2011 Listen Up Awards! In the "read by author" category, we were in great company: John Lithgow, Jane Lynch, Penn Jillette and Amy Chua (Tiger Mom lady).
OK, so Lithgow won - but still. Can't think of anyone better to lose to. I get the "it's an honor just to nominated" thing now - really. Thanks!
Dear Readers: Thanks for your stories
One of the best gifts in any day is finding an unexpected letter or e-mail from someone who has just read Ben Behind His Voices . I treasure these words, and am grateful to you who take the time to share your reactions and stories. These are the best reviews an author can have, especially when they validate the reasons for writing the book in the first place.
A sample from this week's inbox:
"I have just finished reading your book---my first on mental illness---and feel SO enlightened. It is well-written, from the heart ...That love, perseverance and hope continue to be greater than the struggle you face /have faced was a key take-away for me. Thank you for writing this extremely insightful and honest testimony. The resources at end of the book are an excellent addition."- reader in CT
"I recently met you at the American Psychiatric Nurses Association Conference in California. Your talk was extraordinary and very moving, and I continued to be captivated by your book on the plane home. I will be teaching a group of sophomore nursing students in their Mental Health Nursing class this spring, and have made your book required reading for them over the winter break." - University School of Nursing Professor and Program director
"I have just finished your book. I read it in its entirety in 2 days...I am still reeling inside from your candid revelations and your unbelievably forthright delivery. I have to stop typing every once in a while to wipe my tears as I try to put into words what I want to say to you. .. Thank you. Thank you for having the guts to tell your story, Ben's story, Ali's story and for giving the rest of us hope."- A sibling dealing with mental illness in her sister
Thank you!
Randye
Looking Ahead, Reflecting Back: BBHV 2011, 2012
January 4th already. Happy New Year, 2012! Always a good time to look back - but not for too long. Also an exciting time to preview what's possible, as well as planned, for the new year.
In our family we do a "year in review" of our own as we approach New Year's Eve, and certainly tops for me in 2011 was the publication of Ben Behind His Voices, hardcover and audiobook, and all the opportunities that has brought with it to reach families, healthcare professionals, and PAMIs ("People Affected by Mental Illness", the best term I can come up with so far) with its story, information and messages. This year I have been privileged to present at the APNA (American Psychiatric Nurses Association) Annual Conference, sign books at the US Psych Congress, attend and do a poster presentation at NAMI's Annual Conference in Chicago, and connect with so many wonderful readers at author talk/book-reading events for NAMI, RJ Julia Bookstore, Barnes and Noble, Written Words, Congregation B'nai Israel in CT, Fellowship Place, Laurel House, and many more (see "News and Events" for details).
Exciting, too have been TV and radio appearances on Fox News,PBS, ConnTV, WTNH's "Connecticut Style", NPR and more to tell our family's story and share messages like the need for open communication, early detection, more research, better understanding, increased respect, and the importance of purpose, structure, community and love to the recovery process. The Press Room has links to more of these interviews.
On a more personal level, 2011 brought a summer challenge for us, when Ben's treatment services were cut drastically and he was re-hospitalized for almost six weeks. We faced, once again, the possibility of losing so much of what he had gained. Thankfully, he has returned to us once again to resume treatment and the progress he has been making in school, work, and family. We remain so grateful for yet another chance, and also aware that there is so much work still to be done to improve treatment, medical advances, and attitudes.
So - what will 2012 bring? For my son and family I hope for stability and the continued miracles of "ordinary" life and growth. As for the book and audiobook, I hope for more chances to speak with audiences and reach readers, on a national and international level. I also have hopes for increased outreach to professionals and future professionals. I have heard from so many readers that this should be "required reading" for students in this field, and am thrilled to have been asked to speak at two universities so far in 2012.
Some of this is already in the works for 2012, and Ben Behind His Voices hits the road to (so far): Washington DC in January, New Haven CT (Yale) in February, Phoenix Arizona in March (AZ State), Chicago in April (National Council), with a stops in the works for Alabama, California, Seattle, Ohio NYC, Boston and more. As they say, stay tuned for details...here and/or at Mental Illness in the Family award-winning blog at HealthyPlace.com.
Thank you for being such an important part of 2011. Here's to all that is possible in the New Year!
Randye
Diagnosis, Schizophrenia: What Came Next?
Interview on Conn Jackson' show, Get Connected-- he on windy Manhattan (California) Beach, me in a nice warm studio in Manhattan (Big Apple). He asked some great questions, and allowed me to highlight the importance of therapeutic alliance, NAMI, early detection, reduction of stigma, support and education for families, and the importance of love and hope.
Thanks, Conn! Here's what he had to say about the interview on YouTube:
"Watch as Randye Kaye, author, tells us about her son's struggle with schizophrenia and how she helped him though it. Why is Randye's secret advice? Watch and find out!"
Defying Mental Illness: a pre-review
So much to be grateful for this Thanksgiving - especially considering how else things might have turned out without knowing some steps to take when Ben had a relapse this summer. Something I've felt before as well as now: We might have lost him.
For over 20 years, we have spent the holiday at my younger brother's house, around the same table with his wife, sons, and others. Ghosts of Thanksgivings past: Ben absent, when he was wandering homeless out West. Ben not there, because he was in the hospital. Ben there physically, but so involved with his inner world that he might as well have been absent.
This year, though, was wonderful. After a very tough summer, Ben has returned home once again in more ways than one. Part of this year's success is due to a very understanding employer who can see past his illness to the value he has underneath. And for that, how can I - and Ben -not be grateful? We are. The change in Ben, beyond the effects of his medical treatment, has been enormous because of the dignity that comes when you are employed, useful and appreciated. This is true, I think, for us all.
Meanwhile, I am reading an early copy of a book called Defying Mental Illness: Finding Recovery with Community Resources and Family Supports. So far, I love this book. The authors, Paul Komarek and Andrea Schroer, say this in their introduction:
The authors know many people who have made it through the struggle with mental illness, andmany family members and professionals who have supported people with difficult conditions.They have come to terms with mental illness, faced every kind of disorder, and dealt with everykind of treatment. They have rebuilt lives, repaired family relationships and achieved meaningfulsuccess.You can accomplish this too.
I'm already hooked! Will keep you posted. Ben, Ali and I tell our story in Ben Behind His Voices. My first reaction is that we all need a book like this one, too. These authors, I suspect, will provide some concrete information in this book that is "a book that is not too technical, and suitable for communityoutreach work." Welcome!
Practical Advice: Treatment Advocacy Center
This post is for you if you need some clear, practical advice on how to be prepared for a mental illness emergency. The possibility always lurks in the corner, while we try to keep on eye on gratitude for the good days. The Treatment Advocacy Center has an excellent page on this topic, with step-by-step instructions for keeping the monsters at bay by knowing we are ready for them.
I will send you there through this blog post by their Communications Director, Doris Fuller, who says:
We who love someone with a severe mental illness probably all have our own personal coping mechanisms for getting through the worry and fear and frustration of living with the impact of treatable but chronic brain disease. The demons retreat, but they never retire. For me, being ready for them is the first defense.
I suggest you read her short, poignant-yet-realistic post first, but if you're impatient here's the link to the Be Prepared for an Emergency page.
Like all preparation, this takes time - but will save you a lot more in the future. Trust me.
Thanks, by the way, to all of you who wrote to express concern about Ben and his "adventure" in a questionable neighborhood. Like Doris in the above blog post, I had my eye out for a stress-triggered return of symptoms, but luckily his reactions to the stress all seem quite conventional. The only "demons" were the ones I could see as well: fear of returning to that neighborhood, reminding us to set our home alarm and change the locks, some reluctance to be alone. I would feel the same way.
Risk: The Price of Independence?
Ben has been spending a lot of time with us lately; in fact, this is the closest we've had to daily contact since he lived with us prior to his first hospitalizations in 2003. It's different now; he has grown. Eight years in a group home have taught him independence, respect and self-esteem that he'd have never gotten under our roof, safe within our wings and safety nets.
But there is a limit.
Since his episode this summer (right after the too-swift move to unsupported housing), we have had to step in and help guide Ben back to the self-sufficiency he'd earned before. Now, though, I don't trust the services he is receiving - and, I think, he doesn't like living alone as much as everyone said he would. So, much more often than before, he spends the night with his family. We drive him to school, to work, to meetings - feels like high school years all over again, pre-drivers' license. It's fine for now, because it's what Ben needs. But we encourage as much independence as we can, to boost him back up to the mental illness version of young adulthood.
Two nights a week, therefore, he stays at his apartment after school and then takes the bus to the "anonymous" meeting he has attended for six years. Last week, to our horror, this solo journey into a questionable area of town resulted in near-disaster. Ben was mugged. His cash, his beloved backpack (containing precious cargo: textbooks, school papers, handheld video games, poetry, the ipod he had saved for for over a year), his keys - all stolen. Psychically, it could have been so much worse - he was thrown to the ground and threatened with what they said was a knife , but he got away with a wrenched shoulder, a red mark on his neck, and some scrapes. Whew. But now he is, understandably, skittish. He won't go into that neighborhood again, and he is easily spooked now. Anyone would react that way - but with mental illness complications there is addition worry: will the stress trigger symptoms? will he backtrack in his progress? will pain relievers interfere with his meds?
We count ourselves lucky, of course. He is alive, and somehow we will replace the physical things he has lost. He reacted very sanely to the threats - "take anything you want, just don't hurt me." Thank God. But he feels violated, spooked, and afraid in ways of the independence he has worked so hard to regain.
One day at a time. I think we'll drive him to meetings in safer places for awhile. I'd rather he be safe than independent right now. And the delicate balance continues.
Mental Health Awareness: Don't Let it Stop
As "Mental Health/Mental Illness Awareness Week" draws to a close, I open with the hope that awareness will continue. It must. We have come so far, but there is a long way to go.
With luck, Ben Behind His Voices will do its part to help spread that awareness. Last week I did a "radio interview blitz" - 20 interviews in a row! - and a frequent question was about why I wrote the book.
I'm going to let Amy Barry, award-winning columnist for "Parent's Eye View" in Connecticut, answer that question in this excerpt from her recent article, Book Dispels Myths of Mental Illness (click on the title to read full article). Thanks to Amy for asking the right questions, and framing them so beautifully with her own words.
More than a decade ago Congress declared the first week of October Mental Awareness Week to draw attention to the efforts of the National Alliance on Mental Illness (NAMI), an education and advocacy group that aims to "change hearts, minds, and attitudes" about mental illness on a grassroots, community level.
Sadly, we still have a long way to go in accurately diagnosing, treating, creating empathy for, and reducing fear of those who suffer with mental illnesses, despite the fact that illnesses such as schizophrenia are estimated to strike one in 100 people worldwide.
The recently published "Ben Behind His Voices: One Family's Journey From the Chaos of Schizophrenia to Hope" by Randye Kaye is an intimate, honest, heart-wrenching story of a mother and the son she adores slipping away into the throes of mental illness. (The name Ben is fictitious to protect her son's privacy).She says her background as an actress and performer makes her a storyteller and helped her write this book."
It gave me the capacity to step outside the story and tell it," she says. "I think we learn best through stories. You can make the point and teach the facts, but if you don't illustrate it with stories from your life and experience, people can't connect to it."
Kaye's hope is for the story to be gripping and for people to care about "the characters" and also get helpful factual information, which is included as chapter guideposts.
She says she didn't write the book for herself - she had already spent a lot of time processing the grief of having a child with a mental illness."The fantasy that nothing can happen to your kid gets shattered - and it's a really tough piece of glass to shatter," she says. "I wrote the book for parents so they wouldn't feel alone, and I wrote it for providers (therapists, school psychiatrists, social workers), so when they meet them - which is usually at the end of their rope - not to judge them, and to allow the families as much as possible to be part of the recovery. I also wrote it for my son - to increase understanding and reduce stigma for those with mental illness. Until we understand it, we have no idea how much courage it takes (someone like Ben) to get up and have a day."
Parenting, Illness, and...Guilt?
Amanda Fellows, a fellow voice talent and radio host for Business Women Connect, interviewed me today for her show on Blog Talk Radio. We had a luxurious half hour for the interview, rare in commercial radio. Of course, it went by in a flash.
Amanda asked two questions I hadn't heard yet in this round of interviews for Ben Behind His Voices. One was about the process of narrating my own words in the audiobook, published by Spoken Word Inc. (since we are both voice talents, that question wasn't too surprising). The second was about two of the book's chapters, and my feelings as a parent when I had to let go of Ben and allow him "freedoms" that terrified me: once when he wandered homeless in Idaho, a few years later when I had to declare him homeless in order to get him into the system of state care that would eventually help him recover without my constant watch.
Amanda asked, "How did you deal with the guilt?"
My answer had to do with recognizing the difference between productive "appropriate" guilt (e.g. forgetting your kid's birthday and making sure you never do it again) and unproductive "inappropriate" guilt (e.g. I feel bad that I had to ground you, and you missed a party).
Mental Illness certainly raises these stakes - raises them high - but still guilt can be a waste of energy, and can hold back progress that is painful but ultimately necessary. You gotta do what you gotta do.
You can hear the interview here:
Listen to internet radio with Business Women Connect on Blog Talk Radio
PBS, ABC, Boston Globe, and the Flu
Ben has spent the night - we've all been there - worshiping the porcelain throne. Either a stomach flu, or spoiled Chinese food (thanks, Hurricane Irene), but who cares why? Poor thing is in pain. No mom wants to see that. Plus, he is whining! Ah, yes, nothing like a 29-year-old whining "Mommy...." - but whenever I'm sick I want to do the same thing, and my mother's been gone since 1994.
There's an additional issue, of course, when your child has schizophrenia. Will he, can his body, keep the meds down? Last night we carefully orchestrated the meds between episodes, and since they are mainly in liquid form we can only hope most of them got into his system somehow. We counted (believe me, we both had one eye on the clock) 55 minutes from ingestion to, um, rejection.
Ben's main concern, despite his pain? "If I throw up, I won't have to go to the hospital, will I?" I thought, at first, that he was over-dramatizing his stomach pain - but then realized he was worried about having to go back to the psychiatric unit for missing one dose of meds. I'm beginning to think this last relapse really affected him - and that maybe - just maybe - he is connecting the stay to his low levels of meds at the time.
I hope so. but - as always - one day at a time. And this morning, thankfully, he is on the mend. He had to call in sick to work, which he hates, but at least he's staying put on the couch. And his first question this morning, after making sure we called his employer, was: "When should we do meds?"
Meanwhile - The Boston Globe ran a feature on the book recently, and I will travel to Washington DC next week to appear on an ABC-affiliate talk show live at 11 AM, then tape "To the Contrary" for PBS. First really big-time appearances for the book. What if they ask me what my qualifications are? I wonder that, too, as readers are starting to write to me, asking for advice that I wish I had for them. All that I know is in the book, and though I wish I could solve others' problems I know I can't. Here's my thought:"
I'm just a Mom who never gave up on her son - but who also learned that, someday, she might have to."
Please visit the new "Press Room" page, for info and links to more articles and interviews.
A Good Day: Ben Comes Back
Ben is on the phone in the other room right now, talking to his friends and explaining that he hasn't been able to call because "I didn't take my meds and so I was in the hospital for six weeks." Hey! That's way more open than he was with the psychiatrist this afternoon. Very interesting. But - he sounds alive. Happy. And I can breathe once again, while my to-do list grows with ideas to try and prevent this last relapse from happening again.
But today - we celebrate. Sure, "what-ifs" can always crowd out the joy, but short of the actions we can take today, and plan for later, there is nothing left but the choice to be grateful. That's where we are right now, and boy does it feel good. I have never regretted letting happiness win, not once. Whatever else happens - or could happen - we are, and will be, able to handle it somehow. (That's one of my favorite "momentary mantras"...I have seven of them that will form the heart of my next book, Happier Made Simple)
And there's more! This is a really cool day.
1. A package arrived from Rowman and Littlefield: my six "author copies" of my book! And - amazingly - the first one to see these copies was Ben. He's the one who took the picture you see here.
2. Author appearances are building. The latest: a collaboration with the wonderful, devoted, brilliant folks over at Laurel House in Stamford, CT. Watch for more details, but it looks like the book launch party will also be an awareness raiser for the issues we all care about (and solutions, such as the ones exhibited at Laurel House). Save the evening of September 22nd and e-mail me if you want an invite!
3. Thrilled to announce a new partner for Ben Behind His Voices, this time for the audiobook version. I start work next week on the narration for Spoken Word Inc., and it will be available in both CD and downloadable versions. So excited! - This company is dedicated, passionate, thoroughly professional, and as excited about the book as I am. Watch for more on this, but you can always go to facebook and "like" their page at SpokenWordInc, and/or the Ben Behind His Voices, audiobook page.
4. Ben's employer - the best ever - is welcoming him back to work after this six-week absence. Before this episode, they had no idea Ben has schizophrenia. Now they know. And they are still giving him back his job - with a willingness to adjust his hours to whatever the Doctor suggests. Now that's another miracle. Ben starts back to work tomorrow.
And, while you're on facebook, the published version of "Ben" has both a group and a page. Thanks!
Yes, a very good day. My family feels complete again. I'll take every day of that I can get. And now - to figure out the next best steps. Ben's stay with us is only a "visit" so we can get the transitional pieces into place.
One Small Glimmer of Hope: We'll Take It
Today: a "discharge meeting" with City Hospital's psychiatric team, and the case managers for Ben who come in with an alleged treatment plan. The hospital's Chief of Psychiatry informs me that Ben's self-talk is now so strong that he shouts back at his voices at times, and it has taken three tries for a group leader to get Ben back to reality. He is decompensating. The meds he is willing to take are not working. We knew that.
Ben's new case manager, who had supervised (ha!) the transition from supported housing to independent apartment a month ago, does not look me in the eye. Not once.
Thankfully, the Doctor rejects the caseworkers' new treatment plan for now - because Ben is simply not ready for it. I breathe a sigh of relief, and together we all work (well, mostly the hospital staff and me) to see what we can do now, while Ben is still in the hospital, to adjust his meds. This is not easy due to the confines of state law, but it does help that I am conservator. What also will help is the way we, as a united team, choose to phrase things to Ben. I remind them that too many options is never a good thing. The simpler the better.
We go to Ben's room. He is asleep, and right upon awaking he seems like his "good self" - sweet, happy to see me, coherent. The meeting itself goes well, mostly because this Chief of Psychiatry has beautifully executed the conversation with the simplicity we'd agreed upon, and with utmost respect for Ben. Remarkably, presented with only two possible choices, Ben agrees to at least add some Clozaril to the meds he is currently taking. He feels validated, and a part of the plan, and yet we didn't give him enough options to confuse the issue.
It's a step. I'll take it. It's the best news I've heard in weeks. I can breathe again - for today.