First of all, I want to welcome my co-blogger and fellow "accidental mental health advocate" Chrisa Hickey. As you may have noticed, it has been awhile since my last post. There have been many circumstances (travels and crises) contributing to my blog-silence, so I'm thrilled to be now sharing this platform with Chrisa. Welcome! I'm happy to report some more progress for Ben. His life with schizophrenia is inching closer to "normal" - as long as he remains medically stable (yes, for us that means staying on his meds and avoiding alcoholic drinks). I strongly believe that with structure, purpose and community, improvement can build in schizophrenia recovery. Sure, we have to adjust the timetable (no comparisons with other 31-year-olds please), but the "baseline" can move up.
Mental Illness in the Family
The Easter weekend before Tim turned three, he got sick and we spent some quality time in an emergency room. My parents were visiting and while I was gone, my father, the neat freak, got restless and decided to vacuum my family room. He moved a chair – the kind with the skirt around the bottom – and found almost every toy that Tim owned beneath it. He frowned and, according to my mother, uttered something judgmental, while collecting the toys and putting them away properly in the toy box in Tim’s room (Surviving Mental Illness in a Judgmental World).
I enjoy reading blogs written by other parents. It’s great that the Internet has given us a virtual park bench on which to sit and share ideas, tips, frustrations, and joys. I read all kinds of parenting blogs (I dislike the term, “mommy blogger”), not just those about raising special needs kids. I say this as preface to what has historically been a statement that has elicited blow back. Here it comes: I cringe when a parent blogger contributes to mental illness stigma with their blog title.
I’m Chrisa Hickey, mom, wife, writer, and accidental children’s mental health advocate. I say “accidental” because I never intended my writing to be about childhood mental illness. But in 2009, after spending several months in therapy myself, trying to process raising a child with schizoaffective disorder, my doctor suggested I journal as a way to process the severe ups and downs our family was living through. Since I spend 40+ hours a week on the Internet as a full-time eCommerce professional, I started my journal as a blog.
Sometimes, the only way I get a sense of what my son, Ben, goes through as he hears voices and tries to process them is through his poetry and prose: I feel like everybody is piecing together this huge puzzle and I was born with it already solved. I guess that’s a post-life thing. But with me it’s always been about diving deeper. Delving and diving in gray water depths instead of trying to pull that water up to your level where its shade is altered. Its as a different sun shine in your in your world a mirror of a sort that you struggle to see for in refusing to see yourself in disacceptance you are condemned to see it everywhere you go on everyone else’s face….wow I am really showing myself now the strange level these “normal” people live on….hard it be to shatter these dreams of them so solidified by causality taken as righteousness. And the illusion of consciousness. - Ben, 2002 But today I got a different perspective, thanks to my guest blogger, Katherine Walters, who, like Ben, has schizophrenia - but with more insight into it.
Recently, Virginia State Senator Creigh Deeds spoke to Anderson Cooper at CNN and to 60 minutes about a family tragedy that, sadly, could have been avoided. In Deeds' words "the system failed my son." I know how he feels - except that, luckily, my son is still alive. So far. The truth is that, despite the fact that Ben has "case management" from the state, they have to do very little to help Ben, or us. They are overworked, underfunded, and all too glad to have us take the "burden" from their shoulders. But - what would happen to Ben if anything were to happen to us? How Does the Mental Health System Fail? Those with mental illness, and their families, need more support. Much more. Let's go back to Senator Deeds. According to CNN,
Let me be clear, I love my son Ben with all my heart. That will never change. If you've followed this blog or read my book, you already know that about me. If you, too, love someone who has a mental illness, you share that feeling or you wouldn't be here on this site looking for support. But, let's admit it. These illnesses suck. Love my son, hate his schizophrenia.
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.
In our neighboring Newtown, Connecticut, too many families are steeling themselves for the anniversary of an unspeakable tragedy: the shooting at Sandy Hook Elementary School on December 14, 2012. I've recently been interviewed for an article (coming out soon) about whether I think the Mental Health system in Connecticut has changed in the year since the incident. My answer? Not yet, not that I can see. If anything, we're in danger of sweeping the issues under the rug once again. But the questions remain: Could it have been prevented? Should someone have seen the "signs"? And - more usefully, perhaps - what can be done to help stop future tragedy?
Knowing how to help a family member with mental illness requires knowledge about the mental illness, the mental health system, and insight into your family member's personal situation. Last night, I received another e-mail cry for help from a reader. "I began reading "Ben Behind his Voices" last night and have barely put it down. Our son seems to be following Ben's track. We don't know what to do. Any suggestions?" I wish I had all the answers.