Shoulda, Coulda, Woulda... Those of us dealing with mental illness in our families can't help but occasionally compare where we are to "what might have been." It's human nature, I suppose. While comparison can be inspiring, it can also lead to needless disappointment. And we have had quite enough of that, thank you. In my most Zen frame of mind, I am happy for others whose children are on their way to six-figure-incomes and a life with a clear timetable for success, love, and growth. In my not-so-Zen moments, I allow myself that twinge of jealousy. For my son Ben can no more help his schizophrenia than I can stop a blizzard. My mantra for returning to Zennish state, after processing human emotion: "It is what it is." But that is not so easy when the human emotion is grief.
Mental Illness in the Family
The love begins the moment we know we are pregnant - or perhaps even before that, as we dream about the child we might someday have. Then, with each passing day with our child- from the womb, to birth, and as the child grows -our love grows, and the commitment strengthens. Parental vows may be unspoken, but they are as strong as steel. We witness such vows all the time at weddings, but we parents silently take the same vow from the moment we know we are parents: I, Mom/Dad, take you, son/daughter, to have and to hold from this day forward, for better, for worse, for richer, for poorer, in sickness and in health, to love and to cherish, till death us do part. All parents - indeed, all spouses too - know that hopes and dreams must alter as pieces of reality sets in. Our child may be a different sex than we had envisioned; he/she may be born with a birth defect; he/she may want to be a scientist when we had always hoped for a musician in the family. Reality may test our vows, but love is powerful enough to help us ride the waves - and when love seems harder to access, vows take us the rest of the way. When Mental Illness Tests the Family When illness enters the family picture, vows are more seriously tested. When that illness is a mental illness, the test is even more difficult.
After mental illness strikes a family, can a family get happiness back? Can they bond again? These are worrisome concerns because, after all, having a loved one with a serious mental illness like schizophrenia or bipolar disorder can put a lot of stress on family members and change family dynamics.
My son Ben, diagnosed with paranoid schizophrenia at age 20 after five years of confusing onset symptoms, has often seemed "frozen in time" in this phase of recovery; emotionally and cognitively stuck at the age he had been when the symptoms began during high school. Despite three relapses during this near decade of stabilization (all due to instances of refusing meds), Ben has been in recovery most of those years and has progressed in many ways, as I wrote in an earlier post, Mental Illness Frozen in Time Can Thaw. But, until recently, Ben had few friends and I wondered if he would ever get that particular joy back in his life, or when he might reach the stage of self-acceptance that is crucial to healthy friendships. Would he ever again regain what he had before schizophrenia set in; the simple joy of having people with whom he could share a meal, see a movie, laugh and talk, or just hang out?
to: Governor Dannel P. Malloy, Connecticut Dear Governor Malloy, Thank you for taking a stand this weekend for mental health treatment. According to the Connecticut Post, you received a "rousing ovation" at the U.S. Conference of Mayors for demanding that we remove the stigma from mental health issues, rather than destigmatizing violence as we do in many video games. You said: "If we spent as much time and energy on destigmatizing mental health treatment as we do in the proliferation of these video games that destigmatize violence, we as a society would make great gains." Governor, I couldn't agree with you more. Now it's time to put the money (budget) where your statement is.
I have a guest blogger this week - and she is in High School. Her name is Eliana Yashgur, and she attends Hebrew High School in New England. She wrote to me after reading Ben Behind His Voices, and shared her essay with me, which was a runner-up finalist in a contest competition run by a neuropsychiatry lab at which she hopes to intern this summer. I was so impressed by her work that I asked her to be my guest blogger. That lab would be lucky to hire her! If a high school student gets it, let's hope the word will spread. HealthyPlace is doing its part to stand up for mental health. So is Eliana, so can we all.
A Cause of Sandy Hook School Shooting? The obituaries in my local paper still contain too many heartbreaking attempts to sum up the life of a six-year-old. My friends continue to tearfully share personal connections to the heartbroken families in Newtown, where less than one week ago lives were tragically ended - and countless more changed - forever. As we continue to cry out: Why? how? And how we prevent this from happening again? The voices of reason speak out: Better Gun Control. Fewer violent video games. A shift in media coverage to stop sensationalizing violence. More enforcement of mandated treatment for those who need it. And - a cause we have felt personally ever since Ben's diagnosis of schizophrenia - more help and services for those with mental health issues, and for their families. Who will listen? Who will act? We must. All of us. Pick a cause and advocate. Fight back. Speak out. Insist upon change. And don't let these issues fade.
I write this just a few hours after having spoken at a legislative breakfast in Connecticut, where looming budget cuts seem aimed at "saving money" by cutting funding to non-profit agencies that provide needed services to people who have disabilities or disadvantages ranging from poverty to down's syndrome to mental illness...people who, with these services, have a chance to rebuild their dignity, their potential, their futures. Without these services? The costs are astronomical - financially as well as emotionally. Homelessness, hopelessness, aimlessness, illness relapse, even crime. And here we are, moments later, hearing the news that another shooting has occured - this time in our own backyard, in Newtown CT. A shooter has opened fire in an elementary school. An elementary school. Does this have anything to do with untreated mental illness? I have no idea, yet - but it is one of the first things that comes to my mind.
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.
I take no credit for the title of this post. It comes from my son Ben, who is many ways wonderful. I hesitate to define him here with the label "diagnosed with schizophrenia" -but of course that's why I write this blog, and why I wrote my book, Ben Behind His Voices. It's the piece of him that makes his current insights so remarkable. Recently Ben and I were talking about how much better his attitude has been - and I asked him why he thinks he is getting so much closer to his goals these days. He, who used to tell me all rules were stupid and possible "government plots", now cares deeply about punctuality, grades, and doing a good job. Ben's answer astounds me with its depth. He said: "Well, now I'm living my life, not fighting my life."