Kathy Brandt blogs about surviving bipolar disorder and about mental health issues. She is a vocal advocate for those who live with mental illness and their families. She invites others to tell their own stories here and to comment on her posts. All are welcome.
Saturday was another big day for mental health care across Colorado. In Colorado Springs more than 200 people joined the second community discussion at the University of Colorado to learn about and make progress on one of the most misunderstood public issues we face today. It’s part of President Obama’s National Dialogue to raise awareness, promote understanding, find solutions, and develop action plans to address the who live with mental illness.
Jason DeaBueno, vice-president of AspenPointe, a local non-profit that provides mental health services, spoke hopefully about our progress.
The new Health Care Act, he said, is helping people who previously depended on emergency rooms “to find their way to care.” That, along with Governor Hickenlooper’s recent initiatives to develop more mental health centers means more access for those who need it. But there is still much to do and engaging the community in solutions is critical.
DeaBueno urged each of us step up on our soapboxes’ and speak out for change.
A Poem about Bipolar Disorder & Stigma by Joye Chizak
The Last American Outcast
So I went to the Smithsonian
and sought out the lunch counter
taken from the Woolworth’s in Birmingham
some fifty years ago.
Slipping under the velvet rope
I pick the pink leatherette stool on the end
and wait to be served.
All these weirdos
the stench of outcasts still lingering in the air
catsup hemorrhaged like blood thickened by the musk of history,
me, the last of them
right in their spectral midst.
I had never known nor ever even imagined
for a heartbeat
that it would come down to a person like me.
The curator is called
and comes clicking swiftly perplexed.
“You are in a restricted area. What do you want?” she says in a stage whisper.
“To be served…like the others”, I say.
“But you ‘re not even black…” she pleads quietly.
“No, and I am not Irish or Muslin or Lesbian …they all would be served.”
“Who are you? What do you want?”
“ Just a stuffed tomato with chicken salad …and perhaps an ice tea, no lemon.”
“ Who are you?” she asked again,
cocking her head like a chicken looking for defects unseen to her naked eyes.
“I’m a mentally ill American. “
Her eyes widen and she speaks quickly into her phone calling for back-ups.
“I have legal rights. You cannot discriminate”,
by then, suited men pick me effortlessly off the sacred pink artifact and carry me away.
I glance back at the ghosts,
eating grilled cheese sandwiches and sipping cokes
clinking glasses together…the Jews, Gays and Latinos.
My time has not yet come.
The last outcast in America,
not welcome at the great lunch counter of this free and accepting land.
Joye was diagnosed with bipolar disorder in 1980 and has been stable on lithium since 1982. She worked professionally in marketing, now runs her own consulting firm in 2000. She remembers the time she worked briefly at a regional chamber of commerce with young people and disclosed her bipolar illness. Subsequently she was cut-off from executive communication and her duties were downgraded despite her tangible achievements. She’s been writing about the Last American Outcast ever since and also written a short, illustrated book for the loved ones of those with bipolar called Bipolar Bootcamp.
I’ve started this Q&A about bipolar disorder as a way to engage those with bipolar illness and their families in telling their stories. Perhaps by reading others stories, you won’t feel so alone. And writing about your personal exoeriences helps other and it can help you because writing heals. Please join our conversation.
To get you started–A question for those who have bipolar illness, one for families, and one for spouses and significant others. Feel free to go wherever your writing takes you:
Q: What does it feel like to have bipolar disorder? Have you found any strategies that make life easier?
Q: What is it like to have a family member with bipolar disorder? Have you found strategies to cope?
Q: What is it like to have a spouse or partner with bipolar disorder? What difficulties have you had in maintaining the relationship ?
Here’s my story as a mom:
“My son was 20 and beginning his junior year in college when he had his first episode. After that Max had an episode every year. He disappeared among the big city homeless, ended up handcuffed in the back of police cruisers, and came within inches of jumping from a shattered eighth floor window in Philadelphia. By the time he was twenty-six, he’d earned a dozen commitments to psychiatric institutions. Continue reading
Patrice Winsor was one of five panelists kicking off community dialogue in Colorado Springs last night. Patrice, who lives with bipolar disorder and ADD, said her healing began while talking about her struggle with fellow teens. Up until then, she didn’t realize that others battled similar issues. The point? We need to talk about mental illness in spite of the stigma that surrounds it. And that’s what happened in Packard Hall at Colorado College as 230 people came together to talk about the state of mental health in the region and how to fill the gaps in care. I was thrilled to be among them and participating in a conversation that means so much to me as a mother who struggled over the years to find help for my son.
Discussion centered on the lack of education and awareness of mental illness in the community, the toll mental illness takes on families, the effects on business, the costs to society, and more. After the panel discussion, small group dialogues began. No one was reticent to share their experiences and passions about the issues.
This was the first of three forums scheduled over the next months. The goal? To prioritize and develop community-based solutions and localized health action plans by June, 2014 and to implement them with a statewide fundraiser.
As I left the session, I was reminded that “a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.”
The glass doors caught my suitcase as I stepped into a hollow lobby and got onto the elevator, surrounded by doctors in scrubs and baggy-eyed visitors with paper coffee cups in their hands. One by one they stepped off at their appointed floor—cardiology, pediatrics, oncology. On seven, signs to “Psychiatric” led me to a steel door with a tiny window webbed with fine metal strands.
“You have to leave your suitcase and purse and anything you’ve brought for Max here. We’ve got to check everything. No sharps,” which I learned included belts, nail clippers, pens, even the half-filled bottle of juice I had tucked under my arm.
I found Max lying in his bed, legs drawn up to his chest. “Matty,” I whispered. He sat up and smiled—looking at me with a haunted kind of relief. I wrapped my arms around him, thankful to have my hands on my kid, his frame angular and sharp. His eyes retreated into hollow orbs above edged cheekbones; his body slouched with exhaustion. Ugly torn blisters, red and bleeding, covered his heels and toes. He turned onto his belly and I kneaded his shoulders, ran the heel of my hand along each side of his spine. He was so quiet and I wondered where his mind drifted. I had no inkling of what he was experiencing—whether he was glad or scared, reliving his days on the streets of Chicago, or lost somewhere else entirely.
I spent hours in the psychiatric unit that week, interrupted only by walks along Lake Michigan or wanderings through the Water Tower, a vertical mall just blocks from my hotel. I often ended up in the bookstore, sitting on a stepstool with yet another book about bipolar disorder open in my lap. I studied the pages, eighty on medication alone: SSRI’s, MAOI’s, Benzodiazepines, anti-psychotics, calcium channel blockers, and drug complications. Somewhere in these pages, I hoped I’d find answers from the experts. But their advice was thin. I needed something more immediate.
So I began my own list:
#1—Try to smile when you walk onto the psych unit.
#2—Remember that normal is overrated.
#3—Don’t give up the battle with the insurance company and their message machines.
#4—Control yourself when the doctor who says he’s always in by seven doesn’t show up until you decide to go get lunch and is gone by the time you get back.
#5—Never cry in front of Max.
#6—Call your sister and cry to her instead.
#7—Remember to eat and sleep.
#8—Pretend you’re not afraid.
#9—Know that Max and I will get through this.
#10—When things seem hopeless, reread the sentence in the book that says, “Winston Churchill had manic depression.
Excerpted from “Walks on the Margins: A Story of Bipolar Illness”
This week, a jury acquitted Fullerton, California, police officers of any wrong doing inthe beating death of Kelly Thomas, who was thirty-seven and suffering from schizophrenia. I watched the surveillance video of the beating, which was also shown in court. Kelly’s parents saw it too. It was horrible, tragic, heart-breaking and unnecessary. On moment Kelly is sitting on bench, perhaps talking to himself, maybe hearing voices, the next a police officer appears pulling on latex gloves and looking like he’s ready to enter the ring. The match is pretty one sided though. “Sorry, sorry, I can’t breathe, man. Sorry,” Kelly yells as he is repeatedly kicked, tasered, and beaten beyond recognition. He cries out “Dad, Dad. Help me Dad. I love you Dad.” After five days in a coma, Kelly Thomas died.
Today I’m pleased to welcome Tamara Hill, MS, as my guest writer. Tamara is a therapist specializing in child and adolescent mental health. Although she has worked with trauma and autism spectrum disorders, she gleans most of her experience from working with parents, families, and caregivers within the mental health system. She is well known for her advocacy and has spoken on a variety of radio shows, both nationally and internationally, and contributes to multiple media outlets. As a family consultant and advocate, Támara aims to empower families to re-discover authentic living outside of a complex and unfair system.
Severe Mental Illness: Self-Knowledge Makes All The Difference
By Tamara Hill
Do you have a loved one suffering from a mental health condition? Is it mild, moderate, or severe? Can your loved one function independently without you and if not, what are your thoughts about this? These questions were posed to an audience of parents, families, and caregivers at a NAMI parent-to-parent and family-to-family meeting I attended back in April of 2013. I sat amongst a group of mothers, aunts, and siblings who were drastically affected by the mental health condition of their loved one. These families had been exposed to the horrifying consequences of untreated and poorly treated mental illness such as homelessness, incarceration for petty offenses (some major), victimization (rape, murder, robbery), and violence. As I listened to the families share their stories and ask questions, I observed all of us communicating in almost a frantic manner. It was like I stepped outside of myself and could see that we were all so very similar in our plea for change. We recognize that society is becoming the victim of a larger system that criminalizes, ignores, and devalues families almost everywhere. As a therapist, I feel responsible for speaking out on this topic and using my knowledge to educate families. As a friend to someone I love dearly who is suffering, I feel motivated to de-criminalize the innocent victims of poor mental health and impulsive decision making. My career has become my life’s calling, my passion, my responsibility. Continue reading
Back in July, I wrote a blog here and an article for Mad in America titled “The
Case Against Excessive Use of Antipsychotics” about Robert Whitaker’s lecture at the NAMI Convention that my son Max Maddox and I attended. In the blog I talked about how shocked and confused we and others in the audience were about Whitaker’s argument that antipsychotics could cause more harm than good and that they should be used selectively and perhaps not at all. The response to that blog was overwhelming, with people from all sides of the argument weighing in—not just about antipsychotics, but about alternative treatments, how we talk about the experiences of psychosis, the use of the term “illness,” and the financial interest of drug companies that are making billions from these drugs. There were stories from people who said that their medication saved them and from those who said going off them returned them to the self they had once been. Many said that we each need to make our own choices based on what works for us and I certainly agree. There is no cookie cutter approach. But we need accurate information to make the right decisions. That can be hard to come by in a climate that has become so politicized and polarized. Continue reading
It takes a lot of courage to talk about your mental illness because there’s so much judgment and stigma. But when we come out of the shadows and put a face on mental illness, misperceptions dissolve and the barriers of stigma begin to crumble. I’m asking people, who are ready, to tell their stories here on my blog. It’s so fitting that my first guest is Jennifer Marshall, who is doing more than telling her own story, she’s producing “This is My Brave” and inviting others to step into the spotlight with her. Jennifer is one brave and determined woman! Welcome Jennifer Marshall.
I started blogging anonymously about living with bipolar disorder in 2011 when it was still considered fairly taboo to write (or talk) openly about mental illness. About the only mental illness you’d hear discussed was postpartum depression, and even then it was somewhat of a hush-hush topic
Times are definitely changing although the stigma surrounding mental illness still lingers. I was nervous beyond belief earlier this year when I decided to reveal my true identity online after accepting my first paid writing job. I was being recognized for my writing – specifically – the experiences and feelings I was sharing regarding my life as a wife and mom with bipolar disorder parenting two small kids.
I braced myself for backlash, but instead received nothing but praise and positive feedback from friends, family and people I had never met but who had read my story on the cover of the AOL homepage that April morning. It was obvious I had made the right decision to open up about my story. Continue reading
Max and I are pleased that SZ Magazine has featured our book, Walks on the Margins: A Story of Bipolar Illness, as the cover story this month.