Kathy Swearingen: 5 Things I Learned While Supporting A Loved One After their Schizophrenia Diagnosis
An Interview with Stephanie Greer
Have compassion for yourself. “How can you have a beautiful life without making beautiful mistakes?” I read this somewhere and never forgot it. My daughter once said to me, “Mom, I don’t expect you to know everything.” It is OK to cry.
Schizophrenia is a mental disorder that impacts not only the individual who is diagnosed but also their entire support network — family, friends, and loved ones. Understanding and managing schizophrenia is a complex journey that often involves navigating healthcare systems, battling societal stigmas, and managing daily life in new and challenging ways. It’s a journey that teaches invaluable life lessons, reveals the strengths and weaknesses of relationships, and often inspires a new perspective on what it means to love and care for someone unconditionally. In this interview series, we are talking with those who have supported a loved one diagnosed with Schizophrenia. As a part of this interview series, I had the pleasure of interviewing Kathy Swearingen.
Kathy Swearingen is a Family Peer Partner at NAVIGATE, an early treatment program for psychosis with Community Mental Health in Lansing, Michigan. She holds a Master of Divinity from the Pacific School of Religion, a member of the Graduate Theological Union, Berkeley, California, and has served as a teacher, hospital chaplain, and as an IRB member evaluating consent forms in applications for clinical trials. She instigated and created a field study program with Princeton Divinity School for theological students in Rwanda.
Thank you so much for joining us in this interview series! We really appreciate the courage it takes to publicly share your story. Before we start, our readers would love to “get to know you” a bit better. Can you tell us a bit about your background and your childhood backstory?
I was born to a mother from the south and a father from the north, the middle child of five children. After my parents started their family in Manhattan, then Princeton, they settled along the southern Gulf of Mexico.
I grew up in an ecclesiastical household during the Civil Rights era of the 1960’s. My parents were outspoken social justice leaders in de-segregating housing and public schools. Around our dinner table we discussed politics, social justice issues, as well as the births, deaths, and other joys within our community of faith. I often wondered what my girlfriends, whose fathers ran businesses, discussed at meals.
I adore living with and learning from my husband, daughter, local families as they care for loved ones with psychosis, our family pets, big windows, evening readings, writing, afternoon naps, and opportunities for wonder.
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
“Be kind, for everyone you meet is fighting a great battle.”
St. Philo, Alexandria
Often the invisible struggles people carry inside are difficult to know. Since we cannot see what is going on within everyone we encounter, we should try to be gentle. I invite myself to remember this when I scan drivers around me at a red light. Especially the person who tailgated me.
Let’s now shift to the main part of our discussion. Can you share what your journey supporting a loved one with Schizophrenia has been like?
In a few words, it has been an unwanted learning experience. At first I was filled with bewilderment, anger, guilt, fear, and failure on ways to share with friends and family the myriad symptoms of our daughter’s illness. How could we explain her condition while also protecting her adult rights for privacy?
As a child, our daughter sometimes feared being kidnapped when she walked our large dog along a sidewalk to the nearby ice cream shop. I assured her she’d be safe. She always arrived back home with a melting cone of chocolate vanilla swirl. Little did we know that a decade later she would be taken from us by a fire that erupted from within her mind.
Although during childhood out daughter was often forgetful and her bedroom a mess, serious signs of concern developed during our daughter’s senior year in college. Several panic attacks forced her into the ER near her college. She suffered chronic muscle spasms in her neck as well as pain in her legs when she walked. Soon, she took a medical leave her final year.
Once home, we felt helpless as she disappeared beneath delusional thoughts, and mysterious somatic behaviors. Suddenly she could not sit in a chair or walk along a sidewalk. She wanted a ladder out her bedroom window fearing a house fire. She was hospitalized for a month. I include a journal excerpt I wrote from that time.
“Your love makes me feel alive,” she says,
eyes on the floor, blank faced,
looking anything but alive.
This once bubbly girl with a jazzy soul and a voice bursting in major chords-
weeping once over the beauty in one of Chopin’s Prelude. Lights rose beneath her slender fingers moving
across ivory keys. She attended college until her senior year only to suddenly withdraw with a fire burning through her mind.
“It happens at this age,” a doctor said. “When the circuits of the brain knit together, sometimes these synapses misfire.”
Except there’s been a mistake, I say. This wasn’t on my list. Of motherly concerns that a daughter finish college, establish a meaningful career, meet a loving partner, live a fulfilling life.
My list scatters as I sit across from her on an orange vinyl chair beside a finger- smudged glass top,
in the Quiet Section of the psych ward.
No television, no music, no flimsy boxes of puzzles.
To my left, a psych nurse sits behind a large glass window, one eye on her computer, another on us. My daughter’s blonde bangs hang like heavy curtains across her blue eyes.
Last night, nurses had dressed her in a sheer lavender hospital gown,
-after the police had arrived,
-after they’d strapped her down,
-angled her into the back of the ambulance,
-delivered her to this hospital’s pale empty room and sedated her.
Her arms were stretched out , wrists bound. -like a Caravaggio pieta. -like a crucifixion.
This morning she sits across from me, wearing a black oversized NASCAR sweatshirt someone left behind. I struggle to compose myself before the horror of her silence.
Don’t ask questions, I remind myself.
Don’t make her talk.
Just tell her you love her.
I lean forward, touch her hand.
“I love you.”
After a pause she says, “I think you can leave now.”
I rise, stunned. Reluctant to leave, after clearing security downstairs, after being escorted to this floor in a keyed elevator, signed in at the nurses’ station.
But she follows me- as staff approach,
allows me to kiss her, embrace her, one last time.
A whir as the mechanized doors sweep open,
and lock shut.
On this side, patients are free to wander.
Tattooed young women my daughter’s age,
braid each other’s hair and banter.
Canned laughter from reality television spills into the community room where staff in royal blue scrubs
sit around tables, covered with puzzles
to help patients find their
missing pieces.
Was there a turning point in your story where things seemed to change?
Fortunately, a social worker knew of an early treatment program for first episodes of psychosis. Cathy Adams, the director of ETCH- Early Treatment for Cognitive Health- holds a Licensed Master’s degree in Social Work, as well as ACSW and CAADC credentials.
At last our daughter received the type of therapy, medical treatment, and wrap around services she needed. At the same time my husband and I received family education, coping skills, and therapy.
Then the pandemic shut everything down. At first, our daughter was capable enough to finish the last fifteen credits for her undergraduate degree on line, with my husband’s help. For three months he perched beside her at our dining room table to help her focus for twenty minutes, then take a twenty minute break before returning to her computer and assignments.
But the extreme isolation for our daughter was as disastrous as it was for countless others. She spiraled down as covid swept across the globe.
At the same time we were shocked to learn I had follicular lymphoma and underwent surgery during that intensive lock down. After surgery, I spent that summer undergoing radiation. On the final days of my treatment, a hospital counselor said,” How you are feeling? How are you handling your diagnosis and the radiation treatment?”
My eye widened. I was stunned. Someone asked me how I was feeling?
“I know this might sound odd,” I said, “But I look forward to coming here. Everyday. To lie on that warm table in the muted light, give my body over to the gentle hands of the technicians, who tenderly adjust my shoulder? All I have to do is stare at the lovely transparency over the ceiling lights, of a thriving, verdant evergreen trees forest?”
I heard myself laugh and say, “Coming here is the highlight of my day.”
Luckily we soon found, applied for, and received a partial scholarship for our daughter to participate in a treatment center and organic farm nestled in the rolling hills of Ohio Amish country. This center provided medical, therapeutic, and with various other services for young people suffering from depression, bi-polar or psychosis. While we used the rest of her college funds and borrowed to underwrite her stay, I remain deeply troubled that this kind of care is rare and expensive. Few people can afford it.
While she was away, my husband and I read everything we could on psychosis and schizophrenia. Ms. Adams invited my husband and I to register for a new on-line program for parents and caregivers through the University of Washington called P-Reach. A series of training modules provided education, skills, and new ways to cope and nurture yourself and your loved one.
Finally, we had in our hands a set of vital tools.
One of the founders and directors of the program, Dr. Turkington, said, “We believe everyone with psychosis can heal, gain coping skills and get on with their lives.” I felt hope again.
How has your experience been helping your loved one navigate treatment?
In two words, it was discouraging and frustrating. We did not know where to go. Our family doctor, while well-meaning, did not comprehend the full scope of her illness. Psychosis erupts in myriad ways, which can be confusing for physicians and parents. Many people in their late teens and early twenties struggle through emotional doubts and fears which are part of ordinary human development. He referred us to a counseling center where therapists engaged in “talk therapy” which was inadequate and unsustainable.
We also discovered the inadequate mental health coverage we had through our private insurance. To schedule an exam with a psychiatrist was a six- month wait.
Our current national health care system has yet to allocate the funds, not to mention the understanding, that no separation exists between mental health conditions and physical medical care. Hospitalizations for mental health conditions are expensive and provide only a temporary fix. As we all know a third of our prison population struggle with untreated mental health conditions, not to mention a third of our citizens who are homeless. Living under a health care system that believes disorders of the mind are less important than disorders in the body is a failure of justice.
As mentioned before by chance, we encountered a social worker who was able to diagnose her illness by asking simple screening questions like are you hearing voices? Can you tell me what it means to say “A rolling stone gathers no moss.”
As I sat beside my daughter the therapist diagnosed the issue in fifteen minutes : psychosis.
I couldn’t breathe. We had no family history that we knew of, no genetic disposition. Schizophrenia was the last diagnosis my husband and I considered. The car keys rattled in my hands as we headed out to the car. I forced myself not to burst into tears. As I started the car, our daughter, unfazed, asked: “Can we get an oatmeal frozen latte on our way home?”
I steered the wheel, holding tight to a note paper this social worker gave me as we left. Scribbled across it was a name, number, and a treatment program she highly recommended.
Scribbled across that slip of paper I hoped was a lifeline.
What do you wish mental health professionals understood better about supporting family members like yourself?
All physicians in any medical field should know basic screening questions for psychosis and implement them at the initial meeting. Anticipate trauma to the extended family. These unexpected and serious mental health illnesses erupt with collateral damage. To see first-hand a loved one’s psychotic episode shocks your soul and snuffs out hope. Care givers are the ones most needing education, coping skills, and support..
.
Often, supporting a loved one with a mental health condition involves a process of learning and unlearning. Can you share with us some misconceptions you had initially, and how your understanding evolved over time?
The hardest unlearning was the acceptance that I, as a mother, was not in control. I never had control. No one does.
Initially our life felt like a bag of marbles shaken, dropped, and scattered across the floor. Days passed feeling overwhelmed by uncertainty. How to keep her safe? How to respond when she suddenly couldn’t move? How to respond when she feared she would sell her soul to the devil if she allowed herself to play the piano or sing well?
With training and insight I learned from others and adopted new approaches.
“How much does a soul go for these days,” a psych nurse asked her once when she was hospitalized. She didn’t know. This distraction muted her delusion
When she and I walked the family dog often she’d she suddenly stopped moving on the sidewalk of a busy street. Instead of expressing exasperation or anger, I followed my counselor’s suggestion to unfold the camping stool I had brought and sit down to read.
Instead of frustration and worry, I educated myself by seeing a counselor for myself, reading a wide variety of books, attending seminars and on-line websites dealing with psychosis.
Instead of seeking certitude, I developed a muscular tolerance for uncertainty. Utilizing such tolerance is a lifelong journey.
We learned to allow her to take the lead in decision making regarding her medical treatment and care. We learned to listen with our complete focus, instead of thinking of ways to fix her problems while she was still speaking.
I am learning to let go of the guilt so many mothers’ feel and to maintain a neutral, non-reactive atmosphere in our home.
I am taking it day by day.
I really appreciate you sharing your journey, I believe over time stories like these will make a dramatic impact on the stigma of mental health conditions. Unfortunately, in today’s world there is still a lot of stigma to navigate. How does stigma show up in your family or culture and how has it affected you and your loved one?
First, we had to examine and address our inner stigmas and the discomfort that caused. Our culture remains imbued with Hollywood images about mental illness and treatments that are quite antiquated and dangerous. Evidence based studies reveal that most people who struggle with serious mental health challenges are not the perpetrators of violence, but the victims of it. Some shifts in perspective are happening but are hardly enough.
Fortunately, our daughter led the way for us. After treatment with medication, group activities and therapy, she became strong enough to be honest. She shared her condition with friends. Her acceptance was a game changer and due in part due to an employed Peer Partner at ETCH. He invited her to participate in various 5K walks and campus programs to educate the community and eliminate the stigma.
I know this is a very challenging journey (to put it mildly) but when you look back, what is one aspect that you are grateful for? Can you share a memorable joyful moment that you and your loved one experienced together during this journey?
During one of her hospitalizations, she called me on the one shared phone on the wall in the community room.
“Guess what Mom?” Her voice sounded enthusiastic.
“What?
“I heard a voice suggesting that I might be Jesus. Can you believe that?” she laughed. “That is so crazy!”
I delighted in our unexpected moment of unusual humor.
Thank you. Here is the main question of our interview. What are your “5 Things I Learned While Supporting A Loved One After their Schizophrenia Diagnosis?”
- Remain open and curious to new ways of seeing things. I’ve learned not to ask what is wrong, but what is happening? “Tell me more about your experience?” Do not try to fix it. Listening is an active verb.
- I’ve become less judgmental and more curious That pivot in attitude from judgment to curiosity brings a compassion that feels lighter, messier, easier.
- Have compassion for yourself. “How can you have a beautiful life without making beautiful mistakes?” I read this somewhere and never forgot it. My daughter once said to me, “Mom, I don’t expect you to know everything.” It is OK to cry.
- I have experienced the alchemy of transforming pain, loss, bewilderment, and anger, into a listening and calm presence as I support and try to normalize this trauma for families facing similar challenges. From my lived experience I share my realization that we are not alone, that community heals, that everyone’s process of healing is unique, and that resiliency and recovery are possible.
- I’ve learned to embrace people with neurological differences. They have insights we need to hear, understand, and learn. We can’t get our lives together by ourselves.
Self-care is often emphasized in the context of supporting a loved one with a mental health condition. Can you share how you ensured your own well-being during this time and the strategies that worked best for you?
I continued to participate in the activities I love. I learned not to be afraid to ask for help. I found my extended family and community eager to help. One can help without fully understanding the situation. Friends would come and work from our home to be with her while I played tennis. For two hours several days a week all I’d focus on was that yellow ball, and the smiles on the faces of my friends after we played well.
Rest is the best medicine. I adjusted my bedtime. I began to head up to bed two hours before my husband and daughter. Losing myself in books or several Netflix series by myself was a delicious escape, especially “Breaking Bad.”
I found ways for time-outs. On a stressful day I’d create an oasis for myself by locking the bathroom door and soaking in a magnesium bath. The world never came to an end.
I kept a journal to record my feelings, fears and exhaustion, as well my new insights and hope. I took more time to be present. Now I can go back and remind myself how much healing has occurred- for all of us.
Are there any books, podcasts, or other resources that have helped you understand or manage your condition better?
Books
You Are Not Alone Duckworth, Ken, MD 2022 by NAMI National
Hope and Learning : Our Journey with Schizophrenia, Snow-Griffin, Linda, Ph.D., 2022 by Cherish Editions
Living With Schizophrenia: A Family Guide to Making a Difference, Rado, MD, Jeffrey and Janicak, MD, Philip. A Johns Hopkins Press health Book, 2016.
I Am Not Sick: How to Help Someone with Mental Illness Accept Treatment, Amador, Xavier, Ph.D. Viking Press 2012
Promoting Recovery from First Episode Psychosis: A guide for Families Baker, Sabrina, MSW, RSW, and Martens, Lisa, MSW, RSW, CAMH publications, Canada 2010.
On- line resources:
Michiganminds.org
NAMI: National Alliance on Mental Illness,
The Psychosis REACH Team
University of Washington SPIRIT Lab
www.psychosisREACH.org | psychosisREACH@uw.edu
New England Mental Health Technology Transfer Center
Doors to Wellbeing: d2winfo@copelandcenter.com
SAMHSA: Substance Abuse and Mental Health Services Administration www.samsha.gov
We are very blessed that some very prominent names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US with whom you would love to have a private breakfast or lunch, and why? He or she might just see this if we tag them. 🙂
Pete Buttigieg. He exudes compassion even to those he disagrees with. He listens for and hears the question beneath the question, and responds with wisdom and grace.
Thank you for your time and thoughtful answers. I know many people will gain so much from hearing this.
About The Interviewer: Stephanie Greer, PhD is the Co-founder and CEO of Akin Mental Health — a company dedicated to guiding families on their journey supporting a loved one with mental health challenges like bipolar disorder, schizophrenia and severe depression. Stephanie is passionate about this topic from her own personal experience growing up with a mother who struggled with bipolar 1 disorder and found a path forward to overcome the obstacles and live well. Stephanie’s professional experience includes a doctorate in neuroscience as well as design research roles at Hopelab and Apple. Stephanie brings this personal passion together with her world-class science and technology background to support families across the US in their personal journeys supporting loved ones with mental illness. To learn more about Akin Mental Health and join our community, visit us at akinmh.com.
Kathy Swearingen: 5 Things I Learned While Supporting A Loved One After their Schizophrenia… was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.