Ben’s Goals, and Rosalynn Carter rocks

Former first lady Rosalynn Carter has always made mental health part of her platform, and continues to educate.  Check out this video and her latest book, Within Our Reach.
http://www.amazon.com/gp/mpd/permalink/m3Q34F82H33GZK

People with mental illness deserve respect.  Their courage is enormous, the obstacles often beyond comprehension for those who don’t understand.  Ben earned another six college credits this semester, and is on the Dean’s list.  Amazing! He’s getting his life back in small steps.  Never, never compare his progress to someone else his age whose brain functions without illness.  There are other yardsticks to use.

When I cleaned out my son Ben’s apartment seven years ago, I found a little metal box.
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?

At that time, I had just seen Ben admitted to the psychiatric hospital for the fifth time in six months. 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 the rest of the evidence of his disastrous attempt to live on his own that year.

Now, alone in Ben’s old bedroom in our home, I have found this metal box in a storage bin. I sit down on his old captain’s bed. I stare at it. 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. On the inside lid is a quote, printed directly onto the metal, courtesy of the Cinnamon Snaps manufacturer. It says:

“The measure of mental health is the disposition to find good everywhere.”
Ralph Waldo Emerson
I almost smile at the irony of this: Coincidence?

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 now at a standstill. 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.

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11 thoughts on “Ben’s Goals, and Rosalynn Carter rocks

  1. Wow! You "had me at the metal box." What a heartfelt, beautifully written expose of your boy. I believe you will get him back. I know you will.

    Thank you for sharing what was in the box and some of this amazing story. I want to read more!

  2. Thanks for sharing that intensely private moment with the world. I too, have a son who suffers from a mental illness, OCD. So frustrating to see this monster take over the boy who used to smile so lovingly at me when I would play with him. Mental illness is scary. I remember when the first episode happened. I NEVER thought he would be mentally ill. I spent at least 3 weeks looking for a physical ailment that would explain my son's odd behavior. A virus, a nutritional deficiency even a brain tumor. They could take that out! There wasn't one. It was what it was and my husband and I had to deal with this 8 year old boy, who momentarily lost control of all rational thinking. I often look back before that day, when he seemed so "normal". And then again what is normal. Normal changes and normal grows. And pretty soon the "odd" behavior that you once could not understand becomes ok. Because he is my child and I love him no matter what. And I pray that he will find peace and love in his life. I pray your son does too. Thank you, Laura L

  3. Thank you, Randye. You have such an ear to hear the unspoken by those of us who have so much to say and so much difficulty doing so. Yes, we are simply people trying to cope and besieged by demons which constantly get in our way. I empathize with Ben and with all his struggles to reconcile his dreams with his realities.

  4. We all have a different path in this world, but sharing experiences helps everyone with their own trials and tribulations.

    I look forward to reading more.

  5. thank you for these comments, and sharing your stories, reactions and insights. together, we can increase understanding, reduce stigma, and support each other. thanks for taking the time to visit!

  6. Dear Randye – This excert from your book made me cry – you are so courageous to deal with this the way you have – I admire you so much – where can I buy the book?

  7. Randye,
    Your writing is as beautiful and moving as the wonderful, courageous person I know you are. This book must be published.
    Love,
    Suzie W.

  8. Randye, I reflect on your journey, our journies and I celebrate your incredible ability to voice what is in all our hearts as we deal with mental illness. Each story and insight is important for everyone to read and reflect on…. I look forward to holding that book in my hands someday. Love, Stephanie S.

  9. I just found your blog through the BringChange2Mind blog on Facebook. This post, in particular, was so poignant to me, so heartbreaking. I have two daughters with mental illness, one 14 and one 13. They have both struggled since birth, but my oldest had a psychotic break in October, and we've learned since then that she actually had voices for years. I am still trying to come to terms with schizophrenia, what it means for us, what it means for her. It is such a long road.

  10. Thanks, Jennifer, for taking the time to comment. Yes, it is an unbelievably long and complex journey through a mental illness in your child. That's why I wrote the memoir, to share the reality of how it unfolds and also that, with patience and a lot more, there can be joy again. Hang in there, learn all you again, and reach out. One in every four families deals with mental illness in a loved one. There's no cure yet, but there is management, support, and love.

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