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Our Mental Health Blogs

Schizophrenia in the Family: Living in Hope

Schizophrenia in the Family: Living in Hope

If our story of schizophrenia hitting a family were made into a movie, here is where it might end: on the hopeful note of some dreams having come true, after challenges and crises too numerous to count. My adult son, Ben, is stable, taking his medication, able to participate in family functions, and actually working part-time as – of all things – a server in a restaurant where customers come in and ask to be seated in his section.

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2013 and our “Silver Linings Schizophrenia Playbook”

2013 and our “Silver Linings Schizophrenia Playbook”

In the book Silver Linings Playbook (just finished listening to the audiobook version, highly recommended), Pat Peebles believes in silver linings as he watches the “movie of his life.”  Despite four years in “the bad place”(i.e. mental health facility) for reasons he cannot recall, despite a reluctance to take the meds that are helping to stabilize him, and despite the lessons that reveal to him that happy endings are not always guaranteed, he persists in optimism (“If clouds are blocking the sun, there will always be a silver lining that reminds me to keep on trying”)  through a great deal of emotional pain as life continues to throw lessons of reality in his path.

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Across Any Border: Schizophrenia and the International Family

Across Any Border: Schizophrenia and the International Family

Apologies to my readers, new and old,  for not having blogged for a few weeks. I was in London last month participating in an international conference on schizophrenia recovery, and lots of energy went into that experience.

The conference organizers had read Ben Behind His Voices, and so I was asked to share my experience as family caregiver (or, in UK_speak, “carer”).

As you might imagine, I learned a lot more than I shared. The main lesson, reinforced:

When a loved one develops schizophrenia, feelings have no country borders. We do not stop loving when mental illness moves in. We do share feelings of grief, anger, confusion, determination, resentment, loss, helplessness, and more.

I connected first with Georgina Wakefield, my UK counterpart in many ways.

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Emotional Survival Tools: Fortitude, Gratitude, Faith

Emotional Survival Tools: Fortitude, Gratitude, Faith

Last year, NAMI interviewed me for a story about my family’s experience with mental illness.  In it, Jessica Edwards asked me about emotional survival, along with other lessons in our story so far. This is an excerpt from the interview, reprinted here because people have told me they found comfort in its advice.

A Family’s Journey with Schizophrenia

NAMI: You discuss some really painful and difficult times in your story. What was the key thing that got you through those struggles?

Kaye: These two mantras helped me a tremendous amount. They remind me to stay grateful in the moment, and stay in a place of acceptance and hope:

  • It is what it is, now what? – and
  • Whatever happens, we’ll handle it somehow.
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Stigma-Busting: “I Am Enough”

Stigma-Busting: “I Am Enough”

Ben has a friend. A real friend.  They actually socialize. Last night, “the boys” were up until 2 am playing a video game, and I am about to drive them both to school so they can take their finals. They studied. They care about their grades. They talk about life, philosophy, favorite foods and TV shows, and just plain old everyday stuff.

This – as you may already know – seems like a miracle.

It’s as though Ben is finally getting to have his adolescence back – the years that schizophrenia stole, slowly and then nearly completely, until he began to stabilize with the right schizophrenia treatment – and then begin to rebuild.

Bust Stigma to Help Nurture Relationships

Certainly the symptoms of schizophrenia created the biggest obstacle. But the stigma that comes with mental illness came in a close second – and still does.

That’s why this new friendship – and, happily, a few others like it – is so miraculous.  Ben, after years of hiding his illness, is finally finding some friends who know who he is. Not all know as much as others, but every small step toward acceptance can inspire others.

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Mental Illness: What Do Mothers Know, Anyway?

Mental Illness: What Do Mothers Know, Anyway?

Answer: a lot.

At least, given the opportunity, respect and resources, we can learn. So can anyone who loves someone with a mental illness.

Last week I had what I thought was a terrific idea: why not get a parent’s perspective on the recent tragedy in Aurora, the public perception of schizophrenia, and the value of treatment for mental illness?  After all, family members live the experience of seeing a loved one’s decline into mental illness, and (if we are informed, supported, and -let’s face it – a little bit lucky) the benefits of proper treatment.

Schizophrenia expert? Not just an M.D.

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Revisiting Grief: What Mental Illness Steals

Revisiting Grief: What Mental Illness Steals

I can’t complain. Really, our family usually lives in a place of gratitude these days.  Ben is doing well. He actually has a job, after eight hospitalizations and ten years unemployed, and has celebrated his one-year anniversary there.  He cares about school now, and made Dean’s List once again at college. (Got a grade of 98 on his Final Essay on how his stasis was changed by reading Macbeth. Wow.)

Yes, we can’t complain.  This is miraculous, compared to where Ben could have been. Compared to where he would be, without treatment.

When asked how Ben is doing, I usually respond, “Today is a good day.” I look to the sky to see if the other shoe is falling, but these days we are okay most of the time, certain that Ben is taking his meds and therefore inching forward with his life. We are grateful and relieved.

But – every so often – grief sets in, for what we have lost. For what Ben has lost. For what could have been, if schizophrenia had not become our reality.

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Engaging the Family in Recovery: Top Ten Action Steps for Providers

Engaging the Family in Recovery: Top Ten Action Steps for Providers

Senator Tom Daschle Delivered an Inspiring Keynote - including an encouraging answer to my question about the Value of Personal Stories to Healthcare Reform!

What a week! Had the privilege of speaking with behavioral healthcare providers and more at the 2012 National Council Conference in Chicago. I not only got the chance to share our family story – from chaos to recovery –  in a session, but I also got to meet Healthy Places’ Breaking Bipolar Blogger, Natasha Tracy in person, attend her session “To Blog or Not to Blog”, and share some amazing tapas with her at an Iron Chef restaurant!  Natasha is a wonderful writer, and amazing person. We had a great time.

The education track for my presentation was called “Personal Stories of Recovery.” But it can’t just stop with the story. We tell our stories of mental illness for a purpose…and, in this case, I asked the group to note, as they listened, which provider actions worked to help my son, Ben, and our family through crisis to recovery, and which did not (or even made things worse).

Here is the “Top Ten List” that was the take-away:

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Stories of Mental Illness: Why Tell Them?

Stories of Mental Illness: Why Tell Them?

I just returned from a trip to Phoenix, Arizona, where for three days I’ve been on a whirlwind tour of interviews, meetings, and one community lecture, courtesy of Arizona Foundation for Behavioral Health (AFBH) and ASU’s Center for Applied Behavioral Health Policy – all to tell our family story to those who will, we hope, be affected by it in some way.

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Mental Health Nurses: You Make a Difference

Mental Health Nurses: You Make a Difference

I recently had the privilege of addressing a group of mental health nursing students at Fairfield University in Connecticut. Their professor, Joyce Shea, had heard me speak with Mary Moller, PRN at the APNA (American Psychiatric Nurses Association) Annual 2011 Conference, and assigned Ben Behind His Voices as required reading for her mental health nursing students.

To my great delight, Ms. Shea shared with me some of her students’ reactions to the memoir, and invited me to speak with them about how mental health nurses can make a real difference in the family experience when mental illness results in hospitalization.

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