Posts Tagged ‘loved ones’

Dear Writers/Caregivers/Advocates for Loved Ones,

Coach Teresa LeYung-Ryan here . . .  I see how helping a loved one/being an advocate is so much like writing a book.

My papa has been diagnosed with Parkinsonism by his neurologist. If Papa is telling his story, he would be the first-person narrator; if I’m telling the story about him, then I would be the third-person narrator.

A book (story) consists of one main character (also known as “hero” or “protagonist”) or multiple main characters and other characters (other archetypes), a subject matter that is discussed repeatedly (“theme”) and at least one plotline (“what happened?”). The merging of these elements helps the writer show the hero’s journey.

Helping a loved one/being an advocate consists of at least 2 protagonists (YOU and the loved one) and other archetypes (physicians, healthcare and social service providers, other family members and friends, neighbors, coworkers, vendors, . . . the stranger who gives up her/his seat on the train for you), themes (the cause for help and advocacy and the related issues), and plotlines (the interconnected events associated with all the characters).  Who will be the most transformed in the story?  The loved one?  You the caregiver/advocate? The person who is most transformed would be the main character/hero/protagonist.  Perhaps both people will go through great transformation.  Two protagonists!

I am writing – I keep a notebook for whenever I visit my papa or when I do something on his behalf- gosh, there are so many little “subplots” to keep track of! (Is this Papa’s third or last session with the physical therapist? Mary and I need to witness the exercises so that when the P.T. closes the case, we would be able to coach Papa. Did he say he wanted another heating pad? Oh my, there are at least 18 model to choose from.   Gotta review friends’ advice about what is a comfortable bed and also Consumer Reports. Then Papa has to “test drive” some beds. You just can’t shop for a mattress the way you shop for a pair of shoes.

MATTRESS SHOPPING TIPS (from Sealy’s website)

  1. Plan to spend at least one hour in the store.
  2. Wear loose clothing and easily removable shoes.
  3. Test out mattresses in groups of three for easier comparison.
  4. Lie on each mattress for 5 to 15 minutes to let it fully adapt to your body.
  5. Don’t feel rushed. It’s ok to ask for privacy.

I would add:  Bring your own pillow so that your neck is supported while trying out mattresses; maybe bring an extra pillow case too.

And, I am reading the book The Brain’s Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity by Norman Doidge, M.D.  Chapter 2 is titled “A Man Walks Off His Parkinsonian Symptoms”  . . . how John Pepper has been able to reverse the major symptoms, the ones that Parkinson’s patients dread most, those that lead to immobility. He’s done so with an exercise program he devised and with a special kind of concentration . . .

All the “characters” in Dr. Doidge’s books (The Brain’s Way of Healing  and The Brain that Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science) and in Dr. Victoria Sweet‘s book (God’s Hotel: A Doctor, a Hospital, and a Pilgrimage to the Heart of Medicine) are guiding me on my journey as an advocate for my father.  And, I just know that my mom plays a huge role in helping me.

I thank everyone who has given me her/his time, energy, and prayers.

Here are links to websites I’ve relied on lately:  Frances Kakugawa  B. Lynn Goodwin  Norman Doidge, M.D.  Michael J. Fox Foundation

Special thanks to Margie Yee Webb, Frances Kakugawa, Penny Manson, Debbie Ramos and her daughter Melanie who went out of their way to help me research specific items and to Mary, my sister Maria Leung, Linda Harris, Sue, Janet, and Elaine for being there in person.


Writing Coach Teresa LeYung-Ryan












Author & Fanbase-Building Coach Teresa LeYung-Ryan says: “Reach out, not stress out. Enjoy your writer’s journey.”






Writing colleague Pamela Reitman had emailed me the invitation to this half-day symposium. The words on the flyer hooked me. “Building a Caring Community for Mental Illness,” “open to everyone,” “this conference is FREE,” and “light refreshments will be provided.”
And, I didn’t have to be Jewish to attend this event at Congregation Beth Sholom in San Francisco August 30, 2009 Noon-5:30pm.  “Open to everyone” said the invitation.  I would go with my mom watching over me.
In my first novel Love Made of Heart, I had fictionalized my mother’s story, her battling with mental illness, my role as a witness to her suffering. Whenever I give talks on the book, I make the statement: “I advocate compassion for mental illness.”  The conference would give me an

Pam Reitman greets community of mental health advocates

Pam Reitman greets community of mental health advocates

opportunity to meet a spectrum of advocates for mental health.

My impressions and memories of the day:
2 friends carpooled with me.  It was already minutes past noon when I drove up to 301 14th Ave. at Clement St.  I dropped off my friends.   Scanning down the street, I was ready to park many blocks from the Beth Sholom. I couldn’t believe my eyes when half a block down the street, there was a space!  Mom! My parking angel!
Who drives by looking for parking but another friend I had shared the invitation with.
The first person I encountered was a volunteer who opened the glass door and greeted me with a smile.  “Here for the conference?” he asked.  “Up the stairs to the Koret Hall.”
My friends were signing in.  A volunteer handed me a program and welcomed me. I chatted with another volunteer who asked me “Teresa, what do you do?”  “I write stories for those who cannot speak for themselves.”  She told me about her son’s experience at camp—how the one activity he could connect with was story-telling.
A female voice from stage announced the start of the conference. Pam Reitman looked lovely in a black/white/sage Piccaso-ish dress. She welcomed us, told us about the committee’s dedication to making the conference a reality, the history of Bay Area Jewish Healing Center, her personal story. It was hearing Pam’s personal story several years ago that had attracted me to her writing about mental illness.
Rabbi Hyman greeted us with “Nachamu, Nachamu” (Comfort, Comfort).”  He and Rabbi Kukla did in fact create an atmosphere of comfort.  I even sang along a simple song in Hebrew.  A cello player.

Rabbi Hymand and Rabbi Kukla say: "Nachamu, Nachamu"

Rabbi Hymand and Rabbi Kukla say: "Nachamu, Nachamu"

6 panelists shared personal stories.
“I didn’t know we had mental illness in the family until my father suffered from depression, then I found out that his father had mental illness. I had clinical depression after I gave birth.”
“Friends and neighbors bring food when you have a broken leg. They don’t when you have mental illness.”
“There’s stigma on mental illness even among physicians. When I was in medical school, I knew I wanted to be a psychiatrist, but, my classmates looked down at me because they were going to be general practitioners and surgeons.”
“I thought that what I was going through was typical teenage misery. Then in grad school I was feeling happy and confident for the first time, but, I wasn’t sleeping, I wasn’t eating, and I was talking to myself. I thought I was the reincarnation of the person that I was writing about in a research paper; that’s when I knew that something was strange. The book An Unquiet Mind catapulted me to call my friend and seek help. Ten years later, I went back to grad school and became a doctor.”
“Stigmas.  We hide behind the illness, knowing other people would ostracize us. We wouldn’t have to hide behind other illnesses.”
“Psychic history.” “Holocaust survivors… intergenerational healing.”
The audience was given index cards to write questions for the 6 panelists. After several questions were addressed, and the volunteers were collecting more cards from the audience, there was silence. Rabbi Hyman said there was no hurry to fill the moment with words. Filling the moment with silence was lovely.
More questions and responses.
“Isolation.”  “Shame.” “Hope.”
“Some people think we have to find meaning in every experience. What about finding leap of faith instead?”
“When I don’t hear from my son, I double-up the efforts to call him.”
“You can continue communicating even though your loved one is not.”
“There’s no distinction in the way I treat this person and that person. I treat everyone with respect.”

Pam Reitman & Teresa LeYung Ryan write about loved ones with mental illness

Pam Reitman & Teresa LeYung Ryan write about loved ones with mental illness

Refreshments. Pineapple, watermelon, cantaloupe, honeydew melon, strawberries. Danishes, glazed donuts.  I chatted with a yoga teacher. We talked about our moms—how much we miss them.
Breakout sessions.   I was in the group facilitated by Steve Foreman and Sharon Roth. In the library. 11 in the group. We sat in a circle. “What would you like to suggest to the planning committee to make this conference more assessable?” “How to connect with folks who are isolated?” “Volunteerism.” “NAMI” “Why is it when I read a news item about a violent crime, there’s mentioning that the suspect has mental illness as though it’s implied that mental illness leads to violence…?”
“What else can we do to help build a caring community for mental illness if we don’t have time to volunteer?” “Call or email legislative representatives and remind them to include mental health in healthcare reform.” “Share stories.” “Create a blog and invite everyone to tell their mental illness story. Offer resources on the blog.”
Then we gathered in the Main Sanctuary to hear reports from all the breakout sessions. Closing ritual that included prayers and songs.  During prayers, I saw my mom on a swing!  That was the first time I pictured her in that playful act.
A lovely day indeed.
It’s Wednesday, Sept. 2nd, and I Googled “An Unquiet Mind” (the book that had helped Dr. Karin Tamerius, one of the panelist on Sunday).  YouTube had “Personal Reflections on Manic-Depressive Illness” from the Research Channel series.  Dr. Kay Redfield Jamison told her personal story. Such courage to open up about her disease (mania, suicidal depression) and her struggles with medication (side effect that were severely debilitating) that ultimately helped her. Stigmas. Personal and professional reprisals.  Who else could really understand what the patients are experiencing?  She ended her speech about the role of love in recovery.
I’m thinking about Carmen Lee’s organization:  Stamp Out Stigma
and National Alliance of Mental Illess
and my mom.

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