Writing, especially about such emotionally charged topics like schizophrenia, can be draining. That's why I take time to recharge my batteries regularly. One of my favorite hobbies is to collect fossils near my home along California's Central Coast. Another favorite is taking photographs. I often combine two or more hobbies together, as I have here in these three pictures. This photograph is a collection of shark's teeth found in Santa Cruz County.
This photograph is of a fossilized whale vertebrae encased in rocks along Capitola Beach. I love the shape of the vertebrae and enjoy the artistic elements captured in this photo.
These fossilized sand dollars may look like they washed up on the beach within the last week. These, however, were alive 2 to 3 million years ago. I have created prints of these and other fossils, and made greeting cards with the images to send and share with people who are fascinated by fossils.
My fascination with schizophrenia continues to this day, even though I finished researching the devastating mental illness and the impact it has on families for my novel more than four years ago. I still avidly read medical studies, articles and accounts of the complex illness that affects so many individuals. Recently, I had the pleasure of reading one of the best accounts of what it's like to live with mental illness, and how to successfully cope with the disease when I picked up Ashley Smith's book What's on My Mind.
Ashley is an advocate for mental illness and the founder and executive director of a non-profit called Embracing My Mind, which works to reduce the stigma surrounding mental illness that prevents so many from seeking the help they need. What's on my Mind, which was published earlier this year (2014) is her latest advocacy effort. The book is a collection of blog entries culled from Ashley's award-winning blog Overcoming Schizophrenia” and provides an honest and powerful account of Ashley's experiences living with the disease. It covers the dark days of the onset of her illness, where she candidly addresses her first terrifying psychotic break and the disordered thinking that led her to behave in bizarre ways. She addresses her denial that she was ill, which is a common symptom of the disease, and how she learned how to accept the diagnosis and treatment.
Even more importantly, Ashley wrote about the coping skills she developed; information that provides both a blueprint for those living with disease as well as hope. The book also addresses her setbacks, fears, successes, hopes and dreams, and the need to remain committed to her treatment plans.
Very well-written and informative, this book is a fascinating look at what it's like living with a serious mental illness, and I highly recommend it for anyone who wants or needs to learn more about schizophrenia.
Ashley's blog is found online at www.overcomingschizophrenia.blogspot.com. Embracing My Mind can be found at http://emminc-recovery.org/Home.html and at https://www.facebook.com/emminc.
As a longtime journalist and the author or co-author of eight non-fiction books, writing a novel about a serious subject like schizophrenia seems an odd choice. After all, I had spent my entire writing career authoring non-fiction articles and books. Taking on a totally new genre was a challenge, but I took it on. I chose to write a true-to-life novel so I could address more topics thoroughly than I could in a non-fiction tome.
Schizophrenia manifests itself in very different ways in different individuals. To broaden readers' understanding of the devastating mental disorder, I chose to create one character living with paranoid schizophrenia and another displaying what's referred to in medical circles as negative affects of the disease.
I also wanted to address how important the love and support of family members is. By creating two parents with the disorder, I was free to explore how members of two extended families assisted their loved ones to give readers a fuller picture of the different approaches different people adopt. Doing so also allowed me to explore how different family members are impacted, and how they cope with the strain of their father, son, mother, daughter, brother, sister, niece or nephew's illness.
A novel format allowed me to address many more situations and scenarios, as well as present the impacts through the eyes of a child growing up with two parents who are living with schizophrenia. Growing up and discovering how to make sense of the world is challenging enough for anyone. Trying to make sense of your world when the people you look up to most often don't make sense themselves is far more difficult. Creating a character who is faced with the later allowed me to share the thoughts and feelings of a young person as they experience a dysfunctional childhood, begin to understand what's causing it, and finally learning how to cope with and come to terms with their emotional scars.
Sure, writing my first novel was a challenge, and choosing to take a fictional approach to the topic even more challenging. But the result is a novel look at schizophrenia that I hope will help people to learn more about the illness, and in the case of family members, validate their experiences.
When I set out to write "Playing the Genetic Lottery" my goal was to create a gripping novel that would engage readers with an interesting protagonist struggling with a seemingly intractable problem. After the book was published, I was surprised to discover I had two distinctive audiences.
One audience consisted of readers looking for an interesting, character driven novel.
The other audience consisted mainly of readers who wanted, or needed, to understand more about schizophrenia so they could help a loved one who is living with the disorder. Realizing those readers were hungry for information, I decided to revise my novel and publish a second edition. So I trimmed down the novel (and the name) and added links for more info on schizophrenia to make the book more relevant to people who want to learn more about mental illness. I renamed the new edition "The Genetic Lottery" to differentiate it from the original edition and had a new cover produced. I also added the subtitle: "A novel look at schizophrenia" to make it clear what the book is about.
"The Genetic Lottery: A novel look at schizophrenia" is available exclusively as an e-book through Amazon.
Initially, I had planned to discontinue the original edition of "Playing the Genetic Lottery when I released the new version of the novel. But then I heard from a lot of readers who fell in love with Caitlin, the protagonist of my novel, and were upset to hear I was eliminating part of her story. So the original edition "Playing the Genetic Lottery" is still available in paperback for people who love to read about interesting characters who are growing and evolving. You can purchase copies of the paperback through Amazon or buy them directly through my webpage.
I've added new page to this website to include links to other sites that are packed full of information about schizophrenia and mental illness. The direct link is http://terrimorgan.net/links.
Because I think this information is so valuable, I'm including it here on my blog.
Playing the Genetic Lottery is a work of fiction, but schizophrenia is a very real disorder that affects one out of every 100 people across the globe. That means just about everyone has a family member, close friend, or close friend with a family member who is living with schizophrenia. And everyone who loves someone who lives with this devastating mental illness, as the protagonist of my novel illustrates, is affected.
Despite that, many people feel like their situation is unique because the stigma surrounding mental illness. Even in this day and age when people go onto television and share their innermost secrets with the world the stigma prevents many people from talking about schizophrenia and other mental illnesses like bipolar disorder and depression and sharing their experiences. That in turn prevents many people from seeking the help they need.
I hope my novel has shed a little light on schizophrenia, and prompts readers to start talking about mental illnesses. By encouraging conversations, hopefully more and more people will recognize that mental illness is a disease, like cancer or diabetes and that it's nothing to be ashamed of.
There are a lot of great people and great organizations that mental health consumers and their loved ones can turn to for information, resources and support. I've listed the ones I found most helpful when researching schizophrenia and the impacts it has on people along with their URLs. Many of these organizations have local chapters that offer support groups, meetings, and face-to-face conversations, and many address all types of mental illnesses.
The great thing about the internet is that you can access information from any part of the globe. The not-so-great thing is that urls, as well as organizations and associations, can and do change. While these addresses were current in May, 2014, if you find a link no longer works, please email me at firstname.lastname@example.org so I can update this information. If you know of an organization that's not included, please send me information as well.
National Alliance on Mental Illness http://nami.org
Schizophrenia Society of Canada www.schizophrenia.ca
Sane Australia www.sane.org
Rethink Mental Illness www.rethink.org
Mental Health America www.mentalhealthamerica.net
National Alliance for Research on Schizophrenia and Depression www.narsad.org
Schizophrenia and Related Disorders Alliance of America www.sardaa.org
Embracing My Mind www.emminc-recovery.org
Psych Central online resources http://psychcentral.com
Mental Health Association Australia www.mentalhealth.org.au
International Schizophrenia Foundation www.orthomed.org/isf/isf.html
SZ Magazine www.mentalwellnesstoday.com
National Institute of Mental Health www.nimh.nih.gov
http://.schizophrenia.com An online community providing information, education, support and forums
Bring Change 2 Mind (working to end the stigma and discrimination) www.bringchange2mind.org
I wrote this article for the Santa Cruz Sentinel newspaper. It was a gratifying assignment for me, as I love dogs and I'm an advocate for raising positive awareness for those living with mental illness. As the author of a novel about schizophrenia, I fully appreciate the efforts of those, like the staff at the Paget Center, to heal. This An abandoned five-year-old Cocker Spaniel has found a new home and a new purpose in life helping military combat veterans recover from post traumatic stress disorder, more commonly known as PTSD. Laddie was adopted recently out of the Santa Cruz SPCA to serve as the house therapy dog at the Paget Center. The 12-bed residential facility helps homeless vets recover from their traumas and transition back into civilian life after serving on the battle field. The gentle, people-pleasing pooch immediately had a positive impact on residents.
“The mood in the house is lighter” said Lino Montes, the manager at Paget Center. “People who were withdrawn are coming out of their shells. They're taking an interest in walking and feeding him. It's amazing to see the transformation.”
Laddie languished in the SPCA for months because he doesn't get along with other dogs. But when it comes to humans, he offers nothing but love and support. He has the run of the house at his new home, a large fenced in yard to play in, and has an uncanny knack for detecting when individuals need comfort.
“If he sees you're upset, he puts his head on your lap,” Montes said.
The Paget Center is staffed by veterans who have also have been affected with PTSD, and understand the many challenges combat vets face. Funded by the Veteran's Administration, the house operates under the auspices of Front Street Inc., a behavioral health agency, and provides 90 days of emergency shelter for homeless vets and a host of services. Along with individual counseling and group therapy, the Paget Center also helps veterans find jobs, housing, and provides other services to help them reengage with society.
The residential facility, which has been operating for 17 months, has a 98 percent success rate in helping veterans get their lives back on track, Montes said. As manager, Montes has the authority to provide any services his residents need. When he realized the residents would greatly benefit from a house dog, he contacted Mandi Hart, the assistant manager for the Santa Cruz SPCA and asked her to help. Hart recommended Laddie, who had become a staff and volunteer favorite at the shelter for his people skills, and brought him to the Paget Center for a visit. Instantly popular, Laddie was officially adopted a few days later.
“I can't thank Ms. Hart for all the help and support she gave us,” Montes said. “Laddie gets all the attention he wants and has a big house to run around in.”
With a dozen different beds to sleep on, Laddie also seems to know who needs his company most. One of the residents who has struggled with severe insomnia brought on by PTSD said he was able to sleep through the night for the first time in years after Laddie arrived.
“It's awesome,” said Anthony Uzzi. “The first night he was here he slept on my bed. It was the best sleep I've had in years. Having the dog in the room does help me because I'm not constantly listening to sounds. With Laddie, it's an extra set of ears that lets me stay asleep. He's got my back.”
Like other residents, Uzzi said just petting Laddie helps reduce his stress. The dog also provides another set of ears for veterans to talk to about their experiences. While there is a one to two ratio of counselors to residents at the center, and staff members on site 24 hours a day, sometimes the men are more comfortable confiding in the dog.
“You can tell him anything and he's just going to give you that unconditional love,” Uzzi said. “It really does help us heal.”
Laddie also helps add a homey touch to the residential house.
“This place is about giving back the gift of life,” said Kendra Cooley, the center's outreach coordinator. “It's a home, it's a family, it's a safe place and a springboard to the next path.”
For a formerly homeless vet who struggled with chronic pain and depression following a traumatic brain injury he incurred while in the military, the center helped him heal, then hired him to help others.
“This place was a Godsend to me,” said Ernie Soto. “It gave me back my drive, my desire and a purpose in life.”
Understanding mental illness is one of the big keys to reducing the stigmas surrounding it. The stigmas that prevent people from talking about mental illness, and from seeking help. One out of every four people will be affected by mental illness at one point in their lifetime. In my mind, that makes it even more urgent to educate people about mental illness and dispel many of the myths and misconceptions surrounding it.
As many of you know, I live in Santa Cruz County, California, which I consider paradise. Not only is this central coast community blessed with great weather, beautiful scenery, excellent surf and dozens of recreational activities, it's home to a number of wonderful, caring people. This article, which I wrote for the Santa Cruz Sentinel, is just another example of why I love living here.
Linda Braun, who had lived in Santa Cruz County for four decades, loved her home and garden. She had long planned to give both a makeover, but between her volunteer work, real estate career, family and numerous friends, as well as her active lifestyle, she could never find the time. So when the previously healthy woman was diagnosed with terminal lung cancer last August, an entire community of county residents to come together to fulfill her dream.
The makeover was a way for Linda's friends to show how much she meant to to them. Initially feeling helpless and devastated after Braun was diagnosed, her friends, and friends of friends, rallied together to transform her home and garden and make her final days comfortable and bright.
“She was a very special person,” said Val Peyser, who was one of Linda's best friends. “Linda was always one to help people out, and she touched so many lives.”
Her illness took everyone by surprise. Braun had never smoked, and no one had suspected she was so ill until her diagnosis. Braun's daughters, Anna and Hillary, had insisted their mother go to the emergency room because they were concerned she wasn't as sharp and active as normal. Three days later, doctors discovered she had lung cancer and it had spread throughout her body.
“While Mom was still in the hospital, her other best friend Debby Dobbs stepped up and took control,” Anna Braun recalled. “She said we need to do something special for your mom when she comes home.”
Dobbs asked a friend of hers, who is an award winning interior designer, to help select paint colors for Braun's home. The friend, Donna Brunetti, had only met Braun a handful of times, but she was happy to help.
“You could see how everybody was hurting,” said Brunetti, who owns and operates Brunetti's Interiors. “So I called a couple of people and said how about we go over and paint the whole thing. I emailed some friends, and 30 people showed up that weekend to help. There were people there who didn't even know Linda.”
Brunetti assigned everyone different jobs. By the end of the weekend, the house was freshly painted, the furniture had been rearranged, the home decorated and the garden had been redone, thanks to another friend who donated his landscaping services. Many of the volunteers, including Peyser, Dobbs, Roseanna Wright and Brunetti, were still at the house when Linda Braun saw their handiwork for the first time.
“When my mother arrived home from the hospital she couldn't speak; the house was full of everything she loved most,” said Anna Braun. “The community, friends, her family, and our dog and a new home to spend her last days in.
“I still get chills when I think about it,” said Anna Braun added. “As soon as she came in the house everyone started crying. My mom kept saying 'I can't believe this is my house'.”
Watching Linda Braun's reaction was very rewarding to everyone who helped with the makeover.
“It was amazing because she was so appreciative,” Brunetti said. “It was good for my morale as well as for everyone who helped.”
Linda Braun passed away on October 28th, about two months after her diagnosis. Months later her daughters are still so grateful for all the people who helped make their mother's final days full of love.
“It's amazing what a community can do for someone or for a family,” Anna Braun said. “We are lucky to live in such a great place like Santa Cruz..”
I consider schizophrenia, which is the topic of my novel, Playing the Genetic Lottery, to be a family disease. There is a genetic component to the mental illness, meaning it runs in families, a fact that shapes the life of my protagonist in this fictional memoir. I also consider it to be very much of a family disease because it affects the families of the person living with schizophrenia immensely. Having a parent, child, sibling, even a close friend diagnosed with schizophrenia is life changing. Along with sadness, fear, confusion and challenges come questions. How do I help my loved one? What is this disease all about? Did I do something to cause my child to get sick? What will my friends think? How can I cope with my child's/parent's/sibling's bizarre behavior?
I didn't realize how much families were impacted until I began researching the subject before writing about it. So it's been very gratifying to me to hear from readers who have a family member with a schizophrenia diagnosis how helpful my novel has been to them. That's the biggest reward a writer can have; knowing something you've written has helped someone who is struggling with what initially appears to be an intractable situation. That's even more gratifying than hearing from readers complaining Playing the Genetic Lottery kept them up all night because they just had to find out what happened next.
Although Playing the Genetic Lottery is a novel, I worked hard to weave accurate information about the disease into the book. I wanted to raise compassion, but not at the expense of individuals living with schizophrenia. So I was both relieved and honored when Ashley Smith, the founder of Embracing My Mind wrote the following review about my book:
Being a voracious reader, it's hard for me to come up with a list of my favorite books. With the exception of East of Eden, by John Steinbeck, which truly is my favorite book of all time, and my novel, I generally draw a blank. To be honest, my favorite book is generally the one I'm currently reading. Since there are so many books available, I tend to be a little fussy. If the book doesn't hold my interest, I stop reading it. Sure, I'll persevere a little longer if I'm reading it for my book club, mainly so I can explain why I didn't like the book. So, to generate this list of my top 10 reads, I thought back to the eight most enjoyable books I've recently read.