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.
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:
Mental Health Awareness Month, for Caregivers too
Will write more about this later , as I am in Buffalo, NY, getting ready to provide keynote to help NAMI Buffalo/Erie county celebrate its 30th year...but wanted to share one of the interviews about the results of a new survey showing that caregivers of those with schizophrenia do better with more support, more resources, and less stigma. Thanks!
"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:
Fellow NAMI Parents at 2013 NamiWalk in CT
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.
NAMI: How Strong Can an Affiliate Be?
The answer: Very Strong.
NAMI can make a tremendous difference, on levels from personal to political, and ranging from local to national. I have felt it as a Family-to-Family participant, teacher and trainer; I have, I hope, nurtured it as a NAMI National Convention Presenter, and as a writer.
And, as a speaker and broadcaster, I've had the honor and privilege to see NAMI in action, in so many ways. As a family member, I know that NAMI helped me to:
learn about and accept my son's illness
know that I was not alone, and
find ways to turn our grief into advocacy and action.
Nowadays, NAMI serves and can represent those who are living with mental illness as well. Some call those affected by mental illness "consumers", others say "clients", or "patients", or "individuals"...and the debate on the right term may go on. However, the need for respect, individual treatment, understanding and hope remains the much more important issue than finding the right word.
Keynote on Mental Illness: From Chaos to Hope
Last week, I got to know NAMI Summit County, Ohio, when I served as the keynote speaker for their 27th Annual Anniversary Celebration Dinner/Auction, themed "From Chaos to Hope." So close to the subtitle of Ben Behind his Voices...it had to be fate.
When I get the chance to speak to groups of those who care about mental illness issues as much as I do, I always feel that I learn more than I teach; once again, in Summit County, this proved to be the case.
The audience was filled not only with those affected by mental illness in themselves or a loved one, but also with Crisis Intervention Team (CIT) trainer officers, judges, lawyers, healthcare and social work professionals , politicians, and other friends. I learned about the courage, resilience, and actions of so many, by listening to the recipients of the evening's Awards: Journey of Hope, Community Recognition, Lifetime Achievement, Heroes Make a Difference.
I met people who had lost a loved one to mental illness and turned their grief into advocacy; I met those living with mental illness who now mentor others in the same situation; I met the leaders of this affiliate, including of course Mel and Helen Reedy, who have spearheaded so many wonderful programs that show what NAMI can do when there is a vision, and it's properly supported.
NAMI Educational and Support Programs, and Beyond
NAMI Summit County, in addition to providing the Educational and Advocacy services we often associate with a NAMI Affiliate (support groups, speaker series, Family-to-Family, Basics, and other educational programs), offers assistance to those who are striving to cope with a brain disorder. These programs include:
Housewarming
Housewarming provides new, basic household items to assist persons who can now live independently. Since the program’s inception, over 1,000 requests were filled (207 in 2011, alone), aiding in the transition to leading and independent life.
Needy Soles
Needy Soles footwear provides shoes, socks and other footwear to those who cannot afford to buy their own. 664 pairs of shoes were provided in 2011 via vouchers provided through our local Community Support Services organization.
Hair Care Program
Limited income can mean sacrificing basic personal care. A trip to the barber shop or salon promotes self-confidence while providing a basic need. Clients may obtain a voucher redeemable at the Akron Barber College. 608 haircuts were provided in 2011.
Creative Kids
A scholarship program offering the opportunity for kids in Summit County with Mental Health issues to participate in extracurricular activities such as art, drama, martial arts, music and more.
Recovery in mental illness is a community process, and I am grateful to NAMI Summit County for showing me yet another example of what can be done when someone has a vision, and many work together to make it come true. That, indeed, is the path from Chaos to Hope. No one does it alone.
Thank you!
Call Me Crazy: You Are Not Alone in this Fight
Cast of Call Me Crazy
Lifetime is premiering a new film this Saturday at 8 PM:
Call Me Crazy - and I can't wait to see it. I hope you will watch it too.
Here is the description from Lifetime:
Through the five shorts named after each title character -- Lucy, Eddie, Allison, Grace and Maggie – powerful relationships built on hope and triumph raise a new understanding of what happens when a loved one struggles with mental illness. "Call Me Crazy: A Five Film" stars Academy Award® and Golden Globe® winners Jennifer Hudson, Melissa Leo and Octavia Spencer, Sarah Hyland, Sofia Vassilieva, Brittany Snow, Ernie Hudson, Jason Ritter, three-time Emmy Award®-winner Jean Smart, Lea Thompson, Oscar®-nominee Melanie Griffith and Chelsea Handler. Laura Dern, Bryce Dallas Howard, Bonnie Hunt, Ashley Judd and Sharon Maguire direct the anthology
NAMI (National Alliance of Mental Illness) is a partner in this broadcast. They have a launched a new stigma-busting initiative as part of the campaign, encouraging us all to share our stories as part of You Are Not Alone in This Fight.
As I myself prepare to visit Ohio, New York, Louisiana, Michigan, Connecticut and Tennessee in the next few weeks to share our story for Mental Health Awareness Month, I am thrilled that the messages will reach way beyond personal travels and speeches to reach the wide viewing public.
Here is the story I shared on the NAMI site:
My son has experienced what I later learned is a fairly typical gradual-onset pattern toward full-blown, and heartbreaking, schizophrenia. After years of chaos, we have gone through the stages of family emotional acceptance (NAMI Family-to-Family saved us, which is why I now teach and train others to teach it) and have hope once again - but that hope is always guarded, affected by stigma, caution and some sense of loss.
One saving grace comes in realizing we are not alone. Speaking out about family experience brings mental illness into the light, where it belongs. My book Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope was created in part to open eyes, ears and hearts to the family experience - and get schizophrenia out of the closet so we can work on paths toward mental and emotional recovery.
Bravo to Lifetime - I hope this movie can help us take another step away from stigma and toward empathy, acceptance and solutions.
Randye Kaye
The Tragic Newtown Shooting: Attention Must Be Paid
The horrors of 9/11 got us into wars overseas, and the memories continued to be used to justify our involvement there. Will the tragedy in Newtown get us into a war against easy access to assault weapons, underfunded mental health services, stalled research, and lack of support?
Never Forget. Act to Prevent.
Details continue to unfold about what might have contributed to the horrific incidents Friday in my neighboring town of Newtown, CT.
It is beyond comprehension, yet we struggle to find some threads that might prevent a repeat of it.
Many will, I hope and pray, start to listen and make changes to some of the issues involved: smarter gun control, earlier detection of mental health problems, and more access to (and insistence upon) treatment for those problems.
As we struggle to "search for solutions" (this week's topic on Good Morning America), I hope we also get to find out what Adam Lanza's mother, Nancy, had struggled with.
Did she try to get help for her son, only to be denied because he was "legally an adult, and there's nothing we can do now"?
Was she left with no choice but to home-school her son after he dropped out of high school?
Was she lost in a desperate attempt to hang on to some sort of bonding with a son she loved, but was losing to mental illness? (in her case, by teaching him about guns, taking to shooting ranges)
Did she even know how to navigate the confusing world of mental health services, only to find no road map, no support, no funding?
Did the stigma and blame of having a son with mental health problems keep them isolated and feeling there was no community left for them?
All of these things were true for us, at times. We had to, have to, fight every step of the way to get help, support, understanding. We are lucky. Ben's nature is sweet and peace-loving. Even his "grand delusions" when in psychosis were about writing the perfect poem that will create world peace. Also, we found help and community in NAMI, and Ben got support from an ICCD clubhouse, a residential facility, outpatient treatment, and newer medications that had not existed decades ago.
But the truth of the matter is that too many familes (like, I suspect, the Lanzas) simply give up before they can find help and support. They are left to "fix it themselves." Too many families are wiped out financially (as we were), emotionally (as we often were) and socially (as we sometimes were) before they find new paths to recovery. To help these families, I wrote our book, "Ben Behind His Voices", and advocate for the kind of help that might have prevented Adam Lanza from committing the most horrific crime the world could ever imagine.
I don't "know for sure" (Oprah phrase) that this tragedy could have been prevented. But, as the mother of someone who has a mental illness and has managed to find hope, I can't help but wonder - no, suspect - that the answer is yes. This did not have to happen.
We must all fight for understanding, research, funding of services, turning stigma into treatment, and supporting the families who are, too often, ill-prepared to fight mental illness alone.
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.
"Shut Up About Your Perfect Kid": Book Review
Gina Gallagher is co-author with her sister Patricia Konjoian of Shut Up About Your Perfect Kid: A Survival Guide for Ordinary Parents of Special Kids. I first saw this book at NAMI's 2011 National Convention in Chicago, and found it full of useful and realistic information to go with the catchy title.
The authors also write a Shut Up About Your Perfect Kid blog , and I highly recommend that as well.
Since Ben Behind His Voices will be at this year's NAMI Convention in Seattle, I hope to find Shut Up About Your Perfect Kid available there once again, right along with mine. I could have used this book when Ben was going through frightening changes that shook my parenting confidence to the core.
Here are some things not to say, according to the authors (details in their book and blog):
1) "I don't know how you do it."
2) "Give me your kid for a week and I'll whip him in to shape."
3) "You poor thing."
4) "I'm so lucky, my kids are healthy."
5) "If that were my kid, he'd be different."
As the mother of an "imperfect kid" whose imperfection happens to be gradual-onset schizophrenia which began in his mid-teens, I have been on both sides of the fence; I went from proud Mom (though I like to think I didn't brag) to confused/embarrassed/guilty Mom, and back to proud Mom with a new set of criteria for my pride. If you need a friendly, realistic and exceptionally empathetic and informative guide to how to maneuver your way through the world of "Perfect Families", I highly recommend this book. Check it out!
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.
BBHV spotted at social workers Conference
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!"
Crisis Intervention Team Training Makes a Huge Difference
Officer Newkirchen, Deputy Chief Lyddy, Captain Smith
Early this month I attended the annual speaker meeting of NAMI Fairfield, a very strong affiliate in Connecticut. Our guests? Members of the local police force, one of its eight officers trained so far (as of the end of this month) for the CIT (Crisis Intervention Team).
Here a few things I learned:
All Police Academy graduates have had some training in Crisis Intervention. The CIT-trained officers, however, are have advanced knowledge and skills. Kind of like getting the heart specialist instead of the general practice doctor.
Police Officers really do care, and want to prevent crime rather than have to make arrests after the fact.
Police force hires only about 1% of those who apply. Wow.
Those with mental/emotional needs 7 times more likely to encounter law enforcement
CIT Actions now include follow-up with the families after an incident to gather key info and make sure they know about resources. Many are unaware of support groups and other places for info/help.
Families can pre-register information for the CAD (Computer Aided Database) in case of future incidents.
"No one likes to make arrests."
CIT Training helps us all. And these officers deserve our thanks. I know, personally, that without the empathy and understanding police officers showed when Ben was confused and symptomatic, his current life might be very different. Officers in the know took him to the hospital, took the time to call me for information, and handled Ben with respect and care. Thank you.
Any dollars spent on CIT Training saves lots of taxpayer dollars later. Untreated mental illness has a much higher cost, financially and emotionally, than treated mental illness. Ask my son, who is earning a salary instead of costing the state money for a long-term stay in a nursing home. Prevention works, and saves lives.
Families on the Treatment Team- and book reviews
First two official reviews for Ben Behind His Voices: exciting! Every positive review, from official sources like these and from readers, will help spread the message of respect, empathy, truth and the need for supportive services for those with mental illness and the people who love them.
From Kirkus Reviews and Library Journal:
An illuminating portrait of a parent coping with the guilt and heartbreak that come from feeling like one can’t “fix” one’s child. VERDICT: Recommended for anyone who is involved with teens or those with mental disorders, and a darn good read for memoir fans.-Library Journal
A mother wrestles with the advent of her son’s schizophrenia and its long, painfulunfolding….The author….is eminently helpful, particularly in the matter of self-medication,which so many of the mentally ill prefer to taking the medications that have been prescribed for them….Heartfelt and surely of help to those new to living with mentally illloved ones of their own.-Kirkus review, June 15 2011
Thank you so much for "liking" BBHV's facebook page, following this blog, calling your libraries to ask them to order the book, and especially now for this: your comments of support re Ben's recent relapse, and your agreements in outrage that transitional services are greatly in need of improvement. Ben is currently, thankfully, still safe in the hospital while I scramble to try and figure out what options there are for after his release. This I know: if proper plans are not made, he'll slip through the cracks again and will re-relapse. There needs to be the "Person-Centered Treatment" he was receiving in his group home - and that's in opposition to the current team's assessment that Ben doesn't need that type of supervision anymore.
NAMI meets in Chicago
The theme of this year's NAMI National Convention was "Together We're Better." Yes, indeed. I learned so much last week, from so many who are advocating for our loved ones, and will do my best to share with you.
Here's one: Treatment Advocacy Center. Their goal? "Eliminating Barriers to the Treatment of Mental Illness." Check them out - they have a great video there as well as tons of resources. I also met Canadian Susan Inman, who wrote After Her Brain Broke, Helping My Daughter Recover Her Sanity. I recommend her book and articles as well. Now, with Ben hopefully back on the road to medication adherence, it's only because of my insistence - and my official role as conservator - that information is shared with me as to his treatment plan. While I do realize that Ben's recovery is his own journey, I'm not about to let him be totally in charge at this point if I can help it. There is always that balance between stepping in a letting go. In one article called "Help Us Help Our Children" , Inman says,
"This notion of the overly involved mother is especially persistent and pernicious. Common sense tells women that their currently ill children need their assistance, while mental health professionals are too often quick to label their efforts as intrusive and pathological."
Yes, Together we are Better. Families should be included in treatment info and plans whenever possible. Let's work together for "Person-Centered Treatment" that respects the individual but does not close its eyes to the realities of how brain disorders can affect judgment.
Mental Illness Recovery: Four Cornerstones
Ben's recent setback (and, fingers crossed, re-recovery) has cemented, in my mind, the "Four Cornerstones of Recovery" in Mental Health. Here I share them in in a short video for HealthyPlace.com's YouTube Channel.
Attention must be paid to the human being, while making sure the physical balance is maintained by supervising medications.
And for the family? This reminder: education helps. Here, a link to an article about Family-to-Family, and its documented effectiveness:
Support Program Can Help Caregivers Cope with Relative’s Mental Illness
Schizophrenia and Respect: Still Proud of my Son?
The last line of my book is this (no spoiler alert necessary, don't worry):
I am proud to be his mother.
The question you may want to ask, now that Ben has had his first relapse since 2005: Are you still proud of him?
My answer, of course, is a resounding yes.
Hide and Seek
It's harder to get in touch with the glow in my heart right now, I admit. That's because there's such a big knot in my chest when I think about the fact that Ben is currently starring in a rerun of his last relapse in 2005. Back in the same hospital, looking at me with suspicion instead of warmth, stubbornly insisting that his success of the past six years had nothing to do with Clozaril. He doesn't like the way it makes him feel, he says. He is willing to try something else - that, at least, in an improvement over last time - but I wish he'd just skip all the trials that we know from experience don't work, and just go back on the meds that do.
Expectation is the enemy. Time to regroup. He has come back to us before, and he will again, I tell myself. It's just a matter of when and how.At the Connecticut NAMI annual meeting last night (what good timing, to reconnect with the NAMI community), I was reminded that the road to recovery is full of such detours. So I adjust, and advocate, and wait.
Yesterday a letter came in the mail for Ben. Now the master of his privacy, I open it and discover it is yet another letter of congratulations from his college. He has made the Dean's list once again. Was it really only one month ago that he was handling final projects, a new job, four recovery meetings per week, his chores at his group home, and packing to move to the new apartment that was the biggest agency mistake ever?
Yes. It was. And that person is still in there, still my Ben - just hidden behind the voices once again. Temporarily, I hope and pray. We've been here before, and the clouds have parted, eventually, each time.
As an astrological psychic (don't ask) once reminded me, "It's not your journey, it's his." I will do everything in my power to get him back on the road once again, but he must somehow point his own feel in the right direction.
The letter closes with this, from the Dean:"
I send you best wishes for the future, and my hopes that your recent success will be followed by a lifetime of equally satisfying accomplishments."
Yes, please. Please.
Schizophrenia and a "Great Personality" - possible? Yes!
This marks one month of employment for my son Ben. One full month! He loves his job. He has an answer when people ask him "What do you do?" The increase in his energy and pride is thrilling. Really. Thrilling.
Do I worry, still? Hmmm. Well, let's just say I'm keeping my eyes open for signs of stress. And simultaneously trying to stay grateful in each moment. I don't call Ben to see if he has gotten up in time to go to work - but the thought occurs, several times a day. NAMI has taught me that letting go is part of what parents must do - all parents, actually, but it's a more intense process when you've seen your child led into the mental hospital more than once. Letting go, slowly. Learning to trust his abilities, slowly. He has earned it.
Ben said yesterday that his manager told him he was hired because of his "great personality": friendly, "good with people." Wow. What a long road to this place. I know who my son was before the illness (brilliant, charming, loving, funny); I also know how he was when in crisis (mostly unreachable). To see Ben's personality re-emerge - tentatively at first but more strongly now - is indescribable.
Schizophrenia and other mental illness symptoms come in two categories: Positive (added to personality) and Negative (taken away from the personality). The latter is as heartbreaking as the former. Ben's current state of recovery is, I hope, inspiring; still, I know it would change in two days if treatment should stop. So much more research is needed.So much more. For so many, like Ben, are waiting to come out from behind their voices.
Negative symptoms can be helped by certain medications. They can also sometimes respond to the other vital areas of treatment: community, love, purpose, patience, and the proper balance between challenge and reality. According to schizophrenia.com, a short summary of a list of negative symptoms are:
lack of emotion – the inability to enjoy regular activities (visiting with friends, etc.) as much as before
Low energy – the person tends to sit around and sleep much more than normal
lack of interest in life, low motivation
Affective flattening – a blank, blunted facial expression or less lively facial movements, flat voice (lack of normal intonations and variance) or physical movements.
Alogia (difficulty or inability to speak)
Inappropriate social skills or lack of interest or ability to socialize with other people
Inability to make friends or keep friends, or not caring to have friends
Social isolation – person spends most of the day alone or only with close family
NAMI Family-To-Family: Happy 20th Anniversary
The brilliant curriculum of F2F was designed by Joyce Burland, Ph.D a clinical psychologist whose experiences of coping with schizophrenia in her own family over two generations have deeply influenced her understanding of family trauma in mental illness.
This was a program written by someone who had been there, who had stumbled through her own journey as the mother of someone with a mental illness. Dr. Burland’s idea to educate the families in similar situations had initially been met with disbelief. Countless professionals said: “What do families need all that information for?” But she knew better, and persevered. And now, the program has grown and keeps growing.
Without revealing too much about the materials, which really must be experienced in the group setting that helps make it so affecting and valuable, I will tell you that there were many flashes of insight and realization that began to reshape my perspective. This process was not always easy. In fact, it was never easy. Most of that clarity came at a cost. Understanding teamed up with guilt. Information came along with fear. Changing my vision of the future brought anger and grief.
A lot of it was hard – very hard. But at least it was real. And I discovered that I was not the only one dealing with these issues, having these feelings.
Can Schizophrenia be Prevented?
If you want the facts and latest news about schizophrenia and the people affected by it (those who have been diagnosed and the people who love them), I highly recommend two amazing websites: http://www.nami.org/, and www.schizophrenia.com.
NAMI has taught me that there are nine stages of emotional response for the families of those with mental illness. Whether you are in an earlier stage like crisis/chaos, a middle stage such as anger/grief or a later stage such as understanding, information will - immediately or eventually - help to empower you.
Click on the address or title for the links to each website - NAMI's home page, and a new article found on schizophrenia.com about prevention of schizophrenia.
Preventing Schizophrenia
One of the messages in my book Ben Behind His Voices:One Family’s Journey from the Chaos of Schizophrenia to Hope is that early detection is vital. Articles like this help us know what to look for, much as we may not want to see it at the time. Much research suggests that prevention of psychotic breaks can avoid the destruction of brain matter. I encourage you to learn all you can
Legislative Social: Where were the lawmakers?
Here in Connecticut, it's fix-the-state-budget time, and our local NAMI affiliate arranged an event last night that was powerful, organized, and well-attended - except for the state legislators who'd promised to appear. The speakers were inspiring; they had progressed from homeless to productive, from hospital patient to independent citizen, from dropout to Masters Candidate -all with the help of (a)integrated treatment and (b) community. If services are cut for these speakers, they will lose all they have gained. I wish Ben had been there with me to hear their stories; I hope that, someday, he might be willing to share his.
If services are cut, the true cost will be great.
How much more will it cost the state in the future - and, more importantly, how much will be lost in the lives of these speakers and others like them - if we take away the support that helps them now? Without access to a supportive community and proper treatment - including essential medication - my son, all those inspirational speakers and countless other citizens like them, are likely to wind up in hospitals, homeless shelters, the streets, or in jail. That would, indeed, be pound-foolish - and devastating to the lives of courageous individuals who have already accomplished so much.
Where were our state reps? How can they hear the message? It falls to us to speak up for ourselves, for our loved ones. But no one can tell the story the way it was told last night. And too many were absent. Kudos to the 2 state reps who did find the time. Thank you.
Creative writing, then and now
Ben is taking two classes this semester: Directing 101 in the Theatre Department, and Creative Writing. The directing class requires a lot of him, things that his illness have compromised: insight into one's own emotions and the feelings of others, social awareness, stillness, complete connection. Do I tell the professor that Ben has this illness, so she is aware she needs to grade him in accordance with his disability?
And...creative writing. Ben's writing used to look like this:
- and that was before it began to look even more scattered and illegible. Now he is writing haikus, and keeping up with assignments. 200 pages of reading assigned between classes, I fear, may cause him too much stress; yet, it is his journey to complete. He is getting assignments in on time, so far - even, in one case, a day early. That requires a connection of cause and effect I haven't seen in years. Still, I want to make sure he gets a fair shake...do I write to the professor?
Meanwhile in this letter, from a Mom in England who has lost her son to schizophrenia, the story has unfortunately ended quite differently.
She writes this, in The Guardian:
"So the main reason I wanted to write was to say sorry. I did the best I could with you and for you at the time, but it wasn't good enough and I ultimately failed to protect you and keep you safe. I wish I could go back in time and do things differently."
Maybe with support, and without the stigma, her son's life could have been saved. Here is the link to the letter, which breaks my heart:
http://www.guardian.co.uk/lifeandstyle/2011/feb/05/letter-to-my-late-son-who-had-schizophrenia
