Tag Archives: mental illness blog

Open Hearts and Mental Illness: View from both sides

There is so much potential, creativity, intelligence, and a wealth of new perspectives to be gained by being open to those affected by mental illness. One wonderful example is the aptly named Open Hearts Gallery in South Carolina.

Their mission?

One Open Hearts Work

THE OPEN HEARTS GALLERY IS A DYNAMIC GALLERY FEATURING THE TALENTED ARTWORK OF PEOPLE WHO LIVE WITH OR HAVE RECOVERED FROM MENTAL ILLNESS.  ART IS A POWERFUL REPRESENTATION OF THE PERSON WITHIN – HIS OR HER PAIN, RECOVERY, AND TRIUMPH.  THE GALLERY SERVES AS A BRIDGE TO COMBAT STIGMA AND AS A REMINDER OF HOW RESILIENT AND SIMILAR WE ALL ARE.

Check it out. You can also order prints by going to their “contact” page.

 

Can we open our hearts to those with mental illness? Of course, as the mother of a wonderful young man who also has schizophrenia, I am going to say yes – still, as you know if you have read Ben Behind His Voices, there were times when I felt I had to harden that heart in order to survive emotionally. The journey to return to an open heart toward Ben was not without challenges; my book pays homage to the obstacles as well as to the results of the lessons of love, respect, and possibility that we eventually learned.

But, still – there is always another view. I recently has a conversation with someone whose heart was shaped by her own experience as parenting Ben has shaped mine. In his case, he had been stalked by someone whose mental illness was allowed to go untreated. Untreated! That can be the difference between love and fear, between open hearts and a mind forever closed. And I can’t say I “blame” him. How could I?  (for more information about “Eliminating Barriers to the Treatment of Mental Illness”, see the excellent website Treatment Advocacy Center.)

So, while most react to my story with gratitude, this person was cold to the idea of someone with schizophrenia being vulnerable, lovable, capable, and worthy of respect. I hope, perhaps, that hearing our story might loosen his heart just a bit. Stories, and art, can help do that.

Sharing the Message: Interviews, Reactions, Reviews

I had the pleasure of being interviewed on WBAI  in New York by Armand DiMele, for his popular broadcast “The Positive Mind” .  The show aired on August 23, 2011, but you can listen to the archived show here:

If you’d like to read more about Ben Behind His Voices, I’ve had the pleasure of being interviewed by several writers recently. Here are a few links:

Review and Interview

 

 

Oakland County Moms Interview,

Schizophrenia – Parenting Mental Disorder

A Good Day: Ben Comes Back

Ben is on the phone in the other room right now, talking to his friends and explaining that he hasn’t been able to call because  “I didn’t take my meds and so I was in the hospital for six weeks.” Hey! That’s way more open than he was with the psychiatrist this afternoon. Very interesting. But – he sounds alive. Happy. And I can breathe once again, while my to-do list grows with ideas to try and prevent this last relapse from happening again.

But today – we celebrate. Sure, “what-ifs” can always crowd out the joy, but short of the actions we can take today, and plan for later, there is nothing left but the choice to be grateful. That’s where we are right now, and boy does it feel good. I have never regretted letting happiness win, not once. Whatever else happens – or could happen – we are, and will be, able to handle it somehow. (That’s one of my favorite “momentary mantras”…I have seven of them that will form the heart of my next book, Happier Made Simple) Continue reading A Good Day: Ben Comes Back

Families and Mental Illness: Listen, please.

I woke up early this morning, grateful to have slept at all. It’s finally Monday, and the main players on Ben’s so-called recovery team are back at work. Maybe – just maybe – I can do something today that will help Ben, repair some small part of the damage that has been done by the recent, blinders-on, money-saving (ha!) way his recent transfer from group living was handled.

The sleepless night came by surprise. After a Fathers’ Day filled with blessed distraction, I found myself with physical exhaustion but a wide-awake brain when my head finally hit the pillow. The body knows. Sleep would not come. Too many thoughts.

one constructive thing...

Today I awake in the family room, where Ben usually sleeps when he spends the night with us. The pillow and blanket are the ones he uses, and they smell of him even though he hasn’t stayed with us much since moving into his new apartment. This scent, I think, is what finally lulled me into the three hours of sleep that came at last.

Ben’s laundry is clean and neatly folded in the corner of the room. That, at least, was something I could do for him yesterday when the treatment world was asleep. In these three days since his relapse I’ve revisited the earlier stages of emotional recovery for families (introduced in Class 1 of NAMI’s Family-to-Family class), as we all do when crisis suddenly rears its ugly head. Crisis, hoping-against-hope, shock, fear, guilt, sadness, anger – and now I must return to acceptance and advocacy in order to make the calls, have the meetings, figure out a way to fix this if I can. Look out. I’m about to pick up the phone. Continue reading Families and Mental Illness: Listen, please.

Family Matters in Mental Illness and Recovery: Sharing

Since this is a new home for the blog I’d previously shared as “No Casseroles for Schizophrenia” on blogspot, Technorati has asked for my verification, so here it is: 295NHGGCAUTX

Meanwhile, thanks again to you: for following, sharing, and caring.  I hope to continue the dialogue for all of us – one in four families – affected by a major mental illness in one of our own: child, spouse, sibling or parent.

Other excellent forums exist as well, such as:

and many more.

I’ll try to keep you posted right here, and hope you’ll do the same. As always, please feel free to follow, subscribe, comment, tweet- and tell others that we’re here, and they are not alone.

If you are going to the NAMI National Conference, stop by and see me on Friday July 8  (Poster Presentation around noon) to say hi – and  for a free bookmark with book info and alsohelpful tips on family matters!

 

 

Spreading Hope: Speaking and Submitting 28UFDXR7Y75H

My potential book publicist just described Ben Behind His Voices, and its message within, as “a beacon of hope” for those who are going through any similar challenge with a disability in a loved one. I hope so. Oh, do I hope so. That is my dream for this memoir, and for this blog: to spread hope, to reduce stigma, to open dialogues, to increase understanding and respect for those with mental illness and for their families.

I’ve submitted this blog to Technorati so that others can find it. To do that, I must include the code here: 28UFDXR7Y75H.  (It’s in the title too – just in case)

Meanwhile, on June 9th, I will be the keynote speaker for Fellowship Place in New Haven, Connecticut.  Fellowship Place is a shining example of how important community is to those in the mental illness recovery process. NAMI reminds us that essentials for recovery include, among other elements:

  • a safe and stable environment
  • an educated, supportive family
  • something to get involved in: work, community, advocacy
  • sustaining hope and a vision of what is possible.

My Ben would not be where he is without his community – his job coach, caseworkers, house supervisors, doctors, family a friends. It takes a mental health village.  Kudos to all who serving as a beacon of hope, and to all who are absorbing it all so they too may someday advocate as well.

Fellowship Place Community

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.

Ben Behind His Voices – further out of the shadows

Claire Gerus, my wonderful literary agent can be contacted at cgerus@comcast.net. The original titles of this memoir represent some of the changes we’ve gone through as a family since its original draft as To Hell and Half way Back, and first revision as No Casseroles for Schizophrenia: Family Lessons on the Journey to Acceptance. Present title: Ben Behind His Voices: One Family’s Journey through Schizophrenia to a New Normal .

And, indeed, the “new normal” remains in progress – but there is happy news.  One of the reasons I wrote this book is to provide a vision of hope for families devastated by mental illness.  Many of the chapters spell out, all too realistically, the years of confusion and chaos, with sidebars of information I wish I’d had before Ben’s diagnosis.  And we all know that recovery is hardly a straight, predictable road. But – recovery is possible, with a combination of realistic expectations and persistent watchfulness and hope.

Before the symptoms emerged in  mid-adolescence, one of Ben’s most endearing qualities was his way with children – warm, insightful, loving. He was a sought-after babysitter and remarkable tutor.

We lost all that under the illness for many years.  If you have gone through this in your family, I don’t have to explain this any further.  But – Ben is still there, indeed, behind his voices, and he is emerging from the shadows more and more, with each day he stays on his meds.  This week I got to observe him teaching an art project to pre-schoolers (a homework assignment for a college class he’s taking). I saw, for the first time in years, reminders of the patience, creativity and understanding he used to have with kids.

It is possible.  It’s not perfect, but it’s possible.

new excerpt: from Part One: Before the Illness

My Baby Boy

April 30, 1982

It’s hard for me not to see Ben’s life in two parts: before the illness – when everything seemed manageable with normal parenting skills – and afterwards, when all hell broke loose. Hopefully, now, he’s in a third phase: recovery. I remain so grateful that Ben’s doing well. But I am still, on occasion, haunted by the child he was, the child we lost. That child is still inside of Ben, peeking through the cloudy veil of schizophrenia and the medications that keep it under control. Like all parents, I miss the baby I once had. But I also mourn the man he might have become, if not for the illness that got in his way.

My baby. Benjamin was born on April 30th, 1982, nine days late, after a natural labor and delivery. No drugs. See, even now I remind myself, this is not my fault. I ‘d done everything right during the pregnancy, I swear – unless you count the Pepto-Bismol during the first week of what I’d thought was a stomach virus but turned out to be morning sickness. I’d even gotten my husband, William, to change the cat litter.

Although – maybe I had chosen the wrong man to marry. Maybe his genes were somehow flawed and I should have been able to see the signs. I’ll never know the answer to that, but it’s the question I am asked most often: “Does schizophrenia run in the family?” I’m not even sure why it matters, except that the questioner wants some kind of assurance that it can’t happen to their child. …….

….(So) before William and I marked our first anniversary, we celebrated the birth of our gorgeous baby boy. There were no wails of outrage as this child was brought into the light from my womb; there was only a deep breath of life followed by fascination. His face was perfect, and somehow wise. He was beautiful, so beautiful. From his very first moment in the world outside my womb Benjamin was alert and assessing the environment through those intent brown eyes that later would so resemble my own. In the hospital room, I stared at this new life, living the first page of his history, and imagined what else would be written there.

I promised my sleeping little baby that I would always do my best, always stick by him.

Little did I know how fully, and for how long, those intentions would be tested. Never once, with no history of it in my family, did I expect a mental illness would steal his life from him later on. You imagine cuts and scrapes, broken arms, broken hearts, even car accidents or kidnapping – but never schizophrenia.
———————

SIDEBAR:
Is schizophrenia inherited?


Like many other medical illnesses such as cancer or diabetes, schizophrenia seems to be caused by a combination of problems including genetic vulnerability and environmental factors that occur during a person’s development. Recent research has identified certain genes that appear to increase risk for schizophrenia. Like cancer and diabetes, the genes only increase the chances of becoming ill; they alone do not cause the illness.

_____________

To learn more about this manuscript, contact randye@randyekaye.com