By Randye Kaye (parts first published on Ben Behind His Voices blog)
Mental illness makes news. Usually sensational news. CNN reports that Jared Lee Loughner is unfit to stand trial. Last month, Catherine Zeta-Jones spoke openly about her bipolar diagnosis. Charlie Sheen? Anybody’s guess. (But I say: get that man into treatment, stat!)
But what about the people who don’t make the news? What about the large proportion of consumers who are managing their lives somehow, or trying to, without shooting anyone or landing on the cover of People? Those who have been diagnosed with mental illness deserve respect - and help. Their courage is enormous, the obstacles often beyond comprehension for those who don't understand.
My son, Ben, earned another six college credits this semester, and is still on the Dean's list. Plus - in the past two months - a new job, and a move to his own small apartment. All this after seven hospitalizations, seven years in a group home, eight years unemployed. Amazing! He's getting his life back in small steps. But there’s no news coverage for people like Ben.
Why did it take so long? Ben has paranoid schizophrenia. That kind of messes up your path to maturity. Never, never compare his progress to someone else his age whose brain functions without illness. There are other yardsticks to use.
Ben spent lots of time dealing with an illness whose onset confused us all, and then lots of time learning to recover. He’s still learning to recover. But years ago, when all was in confusion and chaos, he’d still had dreams, which he wrote down and kept in a little metal box. I discovered these seven years after his fifth trip to the Emergency Room for psychiatric admission.
When I cleaned out Ben’s last apartment seven years ago, I’d found a little metal box.
At that time, I peeked at its contents: more scraps of paper, obviously precious enough to be stored in this place of honor. I couldn’t bring myself to open these papers then. What crazy ideas would I find written on them? He was so desperately ill, his schizophrenia so in charge of his mind at that time. I’d seen enough; I’d heard enough. I threw the box in with the rest of his “desk supplies” and stored it away with more evidence of his disastrous attempt to live on his own that year.
Recently, I rediscovered that old metal box in a storage bin in Ben’s childhood bedroom. It had originally held mints: “Organic Cinnamon Snaps! Over 100 snaps per box,” reads the cover. The hinges are covered in duct tape now; the picture of forests and volcanoes under the words has faded. Ben’s little treasure box, now seven years old.
I open it. Inside are pages ripped from a small spiral notebook, carefully folded to fit. I hesitate. I do – and I don’t - want to open these.
What will I find? What secrets has he kept in here? I hold the box in my hand, a key to the things my son considered sacred when he was 20 years old.
I take out the first paper and unfold it. I expect to see what I have found before in his writings from that period: grandiose ideas, poetic phrases, delusions that guide my son when his symptoms flare up.
But I’m wrong. It’s only a list of phone numbers, readable, organized. His friends, our family, his most recent employers. At the bottom of the list, the names of some old friends – from high school days – with no numbers listed.
People he hoped to get in touch with again, I think. I’d almost forgotten how many friends he used to have. So many friends. Would they even talk to him now?
I open the next paper. It’s another list, with “Stuff” written across the top, then: candles, lawn chair, blank tapes, phone card, origami paper. The list goes on; it’s a “want” list, or a shopping list. Things he’d like to have for his birthday, perhaps. The simplicity of these small desires touches me.
The next sheet is a to-do list. Again, the handwriting is legible and the columns organized. There are about seventy-five items on this list. Most are written in blue ink, a few in green, black or red. I stare at this for a long time.
Among the plans he’d made:
- Write letters (with a list of over twenty people, including me, Ali, other family, old friends, our rabbi, his old therapist – what had he wanted to say?)
- Write play
- Write animal language dictionary
- Make gifts: Mom pillow, Dream Catchers, Ali cookbook (for his sister)
- Compose college essay
- Build a drum
- Make chess set
More lists: movies he wanted to see, videos he wanted to rent, books he wanted to read, CDs he wanted to buy.
I’d almost forgotten that he used to have dreams. So many dreams, such simple ones. Any dreams at all. It’s not fair! He had all of these plans. Will he ever get to do them?
At the bottom of the pile is a last piece of folded paper. This one is messier, but I can still read what it says. It is full of quotes, ideas, and plans that are more internal. Written here are ideals Ben wants to live by, almost like New Year’s Resolutions:
- Listen a lot.
- Blow nothing up out of proportion.
- Simplify, don’t be hypersensitive.
- Don’t judge people.
- Don’t use your muscles, use your mind.
- Don’t use big words.
- Think before I speak or act.
- Don’t try to control others, let them be.
- Reach out to people, lovingly.
- Hear and consider others’ points of view.
- …and the list continues.
I’d had no idea Ben was trying to change himself all the time I was desperately trying to change him.
Plans for his life - a life at a standstill for so many years. A life worth living; a life worth saving; a life stolen from him. Will he – will we -ever get it back? My boy, my precious boy. I know you’re still in there. Come back to us. Come back to you.
I wipe my eyes, carefully refold the papers and put them back in the little metal box. I wish I could sleep with it under my pillow, like a lost baby tooth, and have my wishes – and Ben’s – come true.
Randye Kaye is an actress, broadcaster, voice talent, and speaker. She is the author of Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope.