[caption id="attachment_811" align="alignleft" width="170" caption="a reminder of hope - and the need to be prepared"][/caption] Today is my son Ben’s 30th birthday. Whoa. How did this happen? I know every parent feels this same sense of disbelief as their children celebrate milestones; still, when your child has dealt with serious illness, that sense of wonder is enhanced by the fear you have felt in the past. I remember asking myself: will Ben even live to be 30? I know there are many parents who share these fears for many different reasons – even with perfectly healthy children, fear of losing your child is part of the beautiful package of love. No, Ben has not been diagnosed with cancer or heart disease. He has not been deployed to a war zone. Ben has schizophrenia, a physical illness of the brain. Yes, it has changed our family forever. But is it life-threatening? You bet it is.
Mental Illness in the Family
[caption id="attachment_794" align="alignleft" width="170" caption="Senator Tom Daschle Delivered an Inspiring Keynote - including an encouraging answer to my question about the Value of Personal Stories to Healthcare Reform!"][/caption] 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:
"We're all human beings too, no matter what anybody says." These are the words of "P.G.H.", age 16, whose art is part of a traveling exhibition called Voices:The Art of Children, Adolescents and Young Adults Touched by Mental Illness now displayed at the Legislative Office Building in Hartford, CT. The exhibit will be there through noon on April 13th, 2012, and then will travel to other areas of Connecticut. Young adults diagnosed with mental illness often feel their potential is lost in the sea of crisis, diagnosis, treatment, and stigma. Especially stigma. Ann Nelson, founder of advocacy organization A Compassionate Mind, wants to create opportunities that, in her words, "offers a voice for youth living with a mental illness utilizing their artist gifts as an awareness and stigma reduction tool."
Nine years ago, I was appointed conservator of estate and person for my son Ben. I remember the court hearing well. Ben was in the middle of his first hospitalization for schizophrenia, refusing medication and wanted to be released. The only way to keep him in the hospital, if he did not agree to stay voluntarily (and that certainly wasn't happening), was to apply for conservatorship. The hospital would then be legally required to keep Ben there - at least until the court date.
Ever since my son's diagnosis of schizophrenia, we have had to work around his strong desire to live without his mental health medications. In the past, he has refused them, cheeked them, thrown them up after swallowing them. They've been hidden in his pockets, his closet, in the bottom of the garbage. Things are better now, but mostly because we are on to his tricks. I'd like to think he is cooperating because of some insight--but the most probable reason is that he simply can't get away with not taking his psych meds anymore.
For Better of Worse? Yes, that's the vow. But when the symptoms of mental illness seem to change the personality - the very soul - of your husband or wife, how do you keep going? How do you hold the family together?
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.
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.
The news is exciting: a research study has found that cognitive improvements are possible for those with schizophrenia - and that the results can stick. And even better: these results can be achieved with the help of a program to teach social and cognitive skills with the use of computer games. A reporter called me yesterday for a comment before she finished her article, and it certainly got me to reflect on my my son Ben, and how he is - slowly - beginning to show more signs of "growing up." One of the very first "aha moments" for me, when I finally began to learn about schizophrenia and its symptoms, came with the information that it is a "double-edged sword" of positive (added to personality) and negative (taken away from personality). I also learned, in NAMI's Family-to-Family course, about the concept of being "frozen in time" for many affected by mental illness.
Every so often, I am reminded that my son Ben still has to work hard to stay focused on the world as we all know it: work, play, conversations, whatever we are watching on TV. Without his medications, that feat is nearly impossible; with treatment, it's certainly easier. But not without effort. Not without strength.