One Reader Speaks: Siblings, Schizophrenia, Support, Strength

Thanks for Reading and Sharing

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

Mental Health Students: Learning from Personal Stories

This entry is a synopsis of a recent post in my "Mental Illness in the Family" blog, where I talk specifically about how mental health nurses have made a difference for Ben, and for our family.

I know from conversations with mental health professionals that they often feel unsatisfied with the fact that they seldom get to see the results of treatment: patients doing better, people in recovery. For mental health nurses, there is no equivalent of the "reunions" that NICU nurses get to see , to witness  the premature infants they'd cared for, now healthy and grown. That is a shame, I think. I wish sometimes that Ben could "visit" the hospital where he got stabilized, to share how well he is doing now. Maybe someday.

Nursing Students at Fairfield University

For now - I feel really proud to have 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 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.

The students had to answer some questions after reading the book, and Ms. Shea was kind enough to share their answers with me.

Question #3 was thought-provoking: What would be like to have Ben as a client?

some answers: "a great experience because these people are special and unique...frustrating because he can be stubborn...challenging yet rewarding to see improvements...his illness does not define him..."

Question #4 brought tears to my eyes: What would be like to have Ben as a brother?

some answers: " like most other diseases mental illness is a family disease...emotionally draining, difficult not knowing what would come next...struggle to accept everything...scary not knowing which version of my brother I would be dealing with each day...however Ben is very loving so it would probably also be very rewarding if I could help him..."

Not an easy question, perhaps - but a key to the compassion that helps families so much.

I loved meeting these students, and hearing their commitment to the work they are training to do. I was thrilled to have the chance to humanize not only the patients they will meet in their careers, but their families as well.  Since they had already read my book, the messages only had to be reinforced rather than introduced.

I look forward to similar opportunities in the future. One of my hopes for Ben Behind His Voices is that it will reach the professionals, both practicing and in training, to help them see the human face of the illnesses they will try to treat.  I speak soon at Arizona State, Mount Union, and other venues. Please feel free to contact me if you would like to know more about Ben Behind His Voices as required reading. Thanks!