Living with Schizophrenia: Your Family is not Alone

Best Mothers' Day gift ever: the Miracle of Ordinary.  Just a simple family dinner for 5, out on the deck, with everyone trying hard to do it all without my help (and me trying hard to stay out of the preparations, not always successfully but close!)  Cute. Sweet. In a MasterCard word: Priceless

Why? So much to be grateful for - happy marriages for both me and my daughter, the end of school finals (i.e. stress) for my son-in-law and son, sunshine, food on the table, etc. - and another Mothers' Day with my son with us instead of in the hospital.

In the past few weeks, I've met many amazing Moms. One of them is Claire, whose daughter Rebecca also lives with schizophrenia, as does my son Ben.  Their story is included in the documentary Living with Schizophrenia (click to view it for free), which is one of Hope and Recovery - when treatment includes the right medications, love of family and community, and healthcare providers who treat the human being, not just the illness,  in a partnership of open communication.

I had the privilege of meeting Rebecca and Claire at the National Council Conference last month in Chicago, along with Dr. Rebecca Roma (also in the film). All of these wonderful women inspire me, and I hope they will inspire you too.

Claire is currently reading Ben Behind His Voices, and says:

Rebecca, Claire, Randye at National Council

I am delighting in your book even more now that I know the author!  Your book is amazing... I like the boxes with information in each chapter...I applaud all your hard work to get this book written.  It really is a great resource .

Thank you! and thanks to all who have shared their stories with me, and the world, so that no one has to feel alone.

Also in the film, also an inspiration, are Josh and his family, Ashley, and Dr. Xavier Amador, the author ofI am Not Sick I Don't Need Help. Read it if you still think you must "convince" your ill relative that they have an illness before anything can be done. It, and this documentary, may change your mind - and help you to be a partner in a loved one's recovery journey.

I am a proud M.R.G. (Mother who Refused to Give up). Because of the support, education and inspiration I've gotten from people like Claire and Rebecca - and the others in this film - the choice to remain beside my son in his journey has been easier, more hopeful, and more successful.

Gentle Reality Check - and LEAP with Xavier Amador, Ph.D.

Sometimes Ben’s behavior is so wonderfully ordinary that I almost let myself imagine that none of this ever happened: the hospitalizations, the calls to the police, the fear and chaos.  I can forget, for a while, that Ben has a serious mental illness.

It’s Yom Kippur. I can see Ben in the congregation at services this year, from my place in the choir. He is clean-shaven, dressed up, sitting next to his sister and her fiancé. My growing family. I feel so joyful to have them all here, together.  They’re all participating, even listening to the Rabbi’s sermon on apologies. Still, I keep checking on them – well, on Ben – every few minutes. Sometimes I catch his eye, and he smiles and waves to me.  Then there are the moments he doesn’t know I’m looking: I catch him grimacing, mumbling a bit under his breath.  The self-talk.  He usually can keep it under control now, but it comes out in overwhelming situations.

Yep. He still has schizophrenia. I know it, of course, but sometimes I like to imagine it was all a nightmare that is now over.

In a way, though, some of that nightmare is over.  Thanks to some excellent life teachers, I have changed how I react to this situation, and that changes the situation itself. I have given up on being “right”.

Part of that change in my attitude was greatly influenced by the book I am Not Sick, I Don’t Need Help,, by Xavier Amador, Ph.D. If you're still stuck in the frustration of trying to convince your relative that he/she has a mental illness, I highly recommend you read it. It may save your relationship.

Two weeks after Yom Kippur, I get to spend two days with Dr. Amador and hear first-hand about his experience when his brother developed schizophrenia - and how, years later, they were able to be brothers again. The pain is all too familiar; thanks to info like this, though, my family has been able to have Ben back in our lives. Like Dr. Amador with his brother, I began to regain (and still retain) my relationship with my son when I let go of being right, or being somehow able to say the magic words that would “convince” Ben that he had a mental illness.

These two day are about paying it forward; we are learning how to apply the LEAP (Listen, Empathize, Agree, Partner) process in helping someone with mental illness, and about training others to apply it.  We’re a hand-picked group: two from NAMI Family-to-Family, some providers, and mainly police officers.  I’ve never had the chance to hear crisis stories from the law enforcement perspective, and am so in awe of these detectives, hostage negotiators, trainers, and crisis intervention specialists.

In the crisis years with Ben, I had to call the police several times.  Once, Ben called them to report that I had been threatening violence toward him (a long story, but unfortunately not an unusual one). Fun times indeed. Lucky for me, the police in my town had been trained in handling a crisis with humanity, respect and perspective.  It could have been so much worse. To them, and to the cops who took this training with me, I say a huge thank you. 

Families in crisis are so raw, vulnerable, confused, sad and often angry. Your patience and empathy helped us through.

With more understanding and action like this, we can work to reduce the stigma and chaos of mental illness.

PS – some exciting news coming soon about Ben Behind His Voices: One Family’s Journey through Schizophrenia to Hope. Stay tuned!

And you can write to me at randye@randyekaye.com if you want to receive the news via e-mail.

Beyond Trauma

I had the pleasure of presenting with Linda Appleman Shapiro, author of Four Rooms, Upstairs: A Psychotherapist's Journey Into and Beyond Her Mother's Mental Illness, last week at the library in Ridgefield, CT. Each time I tell Ben's (and our family's) story, I see at least one face in the audience that seems to open with relief: Can we really talk about these secrets? Is mental illness really not the source of shame I've been assuming it is?

Yes, let's talk. A mental illness is just that: an illness. It is no one's fault. It just is.

Great books for practical advice:
When Someone You Love Has a Mental Illness by Rebecca Woolis
I'm Not Sick, I Don't Need Help - Xavier Amador - great info, "system" doesn't always work, but helps understanding greatly
and - believe it or not, for basics - there are "dummies" books for schizophrenia, bipolar, etc.

What familes need:
Support
Education
Acceptance (Letting Go)
Reality check, Respect, Resilience
Communication
Hope - and, yes, Humor

It spells SEARCH.
My son Ben is living a very worthwhile life, filled with love, even with paranoid schizophrenia. Even so, my expectations have changed. It is a new normal. R for reality...