Contrary to the popular saying, you don't have to be careful what you wish for. Wishes are dreams, and it's nice to dream. However, do be careful about what you expect. Unrealistic expectations can be the root of unhappiness with the reality of your life.
My son, Ben, who lives with paranoid schizophrenia, used to seem lost to us almost completely...maybe 20% of him was occasionally glimpsed by us behind his symptoms. Now, with treatment for schizophrenia, he is back with us - about 65-75%. Depends on the day. But I'll take it.
Parenting and Mental Illness
The past few weeks have been a whirlwind of wonderful interaction with people in treatment for mental illness and those who are part of their community of recovery. I will write more about the stories, struggles and solutions I've heard in Louisiana, Michigan, Tennessee, and (soon) Ohio, but right now I want to share the wonderful list from the BeST (Best Practices in Schizophrenia Treatment) Center at the Northeast Ohio Medical University. I'll be meeting some families there on Thursday before I provide the keynote for NAMI Summit County's Annual Dinner, and I can't wait.
Meanwhile, I found this list of tips on their website, and it's a great summary of some of the tips you can find here on HealthyPlace.com. As Schizophrenia Awareness week approaches, families need all the tips we can get - and to know we are not alone in this fight to aid awareness and advocate.
Early Detection is important in schizophrenia, and the more families and practitioners I meet, the more I am convinced that "Early education and support" matters a great deal for families, so they can become prepared to help as best they can. Otherwise, the confusion and frustration can result in families who end up just giving in to the frustration. So, in that spirit and with thanks, I share this list.
So, maybe I was wrong. Sometimes you just don't know.
Yesterday Ben seemed a little bit off. We know the signs. He tries too hard to be "sociable"...like asking "how was your day?" three times in the space of ten minutes. His smile seems too forced, his attention to some tasks too focused. He seems to be mumbling under his breath to - to whom? When I ask, he tells me he's just thinking about a song.
Insert sigh here. What might come next? And what can I do?
Meds, or Mood?
In the past, moods like this were usually precursors to worsening symptoms, and a sign that Ben was off his medications. But now...now we ourselves supervise the twice-daily regime, and Ben has been remarkably relapse-free for over 18 months.
Still - something's up. Something is not right. But what? And why?
My son Ben spent his Saturday afternoon playing basketball with 3 friends.
If you, too, have a child or other relative living with mental illness, you know that this is a small miracle - or maybe not so small. Ben's social brain function has been among the victims of his schizophrenia. But it's possible that it can come back - and, in some ways, it has begun to.
"Are you taking your meds, sweetie?" asks Hannah's Dad, juggling the cell phone as he shops in the hardware store.
"Of course I'm taking my meds!"shouts Hannah, as she compulsively counts to 8 in every imaginable way (Hannah has OCD), hides from life under her comforter, and tries to cope with the pain she has inflicted upon herself with a Q-Tip. (Hard to explain. Gotta see the show.)
Of course, Hannah is clearly not taking her meds.
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.
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.
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 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."