Are you a mother or father of a son with a mental health or behavioral disorder? How did you cope with the reality that your son would probably need your help and support for the rest of his life? For many parents, accepting an illness can feel like one of the worst things you’ll ever have to do. Many mothers have spoken to me about their struggle to not only accept but also to live with their child’s illness. It isn’t easy. It’s almost unimaginable.
That happy child you birthed is now a sad, overlooked young man who has become the victim of a failed mental health system, years of unhelpful medications, and perhaps even mediocre therapy sessions. The stress and pressure of being the mother or father of a child who isn’t being helped, is insurmountable. For many families, an illness requires so many levels of adjustment such as emotional, psychological, physical, financial, and even social. Fear of stigma, of not being taken seriously, of being judged or blamed, of not being able to afford care, of being turned away by insurance companies, of your child getting into legal troubles, of being misunderstood, etc. lives in the hearts and minds of families experiencing the sting of severe mental illness.
Kathy Brandt, mother, author, advocate, and blogger knows this all too well. Lets learn from her story.
Kathy, most families experience great stress, confusion, and uncertainty when a family member experiences a mental illness. Could you please explain the beginning of your journey and how you accepted (or did not accept) the diagnosis? Tell us about your journey.
My son, Max, was twenty and a junior in college when he began his manic journey through the small college town of Grinnell, Iowa. He was picked up by the police, transported to the hospital, and diagnosed with Bipolar I. I never doubted the diagnosis. His symptoms were classic—severe mania that developed into psychosis and then suicidal depression. He stabilized and returned to college the next semester. I wanted to believe he would take his meds and would be okay, but a year and a half later while on spring break, Max disappeared in Chicago.
I feared the worst, pictured him sleeping under a bridge, bleeding in a back alley, or laying unidentified in a Chicago morgue. I kept my phone in my pocket and when it rattled against my hip, I prayed someone would tell me Max was okay. The call finally came. Max had been admitted to a Chicago hospital. I told myself he would get through this episode just as he had the last, that his dreams would not be buried under the rubble of manic-depression, that every page studied, paper written, canvas painted wouldn’t seem like a lie.
Max had an episode every year after that. 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.
What was the most difficult part of this life change for you and your family?
It was the fear and uncertainty–that Max would not be able to recover, live happily, find meaning, take his rightful place in the community. It was the helplessness—that we were never able to get help when Max had a relapse, never able to get him hospitalized.
We all have been shocked by the multiple stories in the media, in our communities, and on the news about acts of violence at the hands of someone with a severe and untreated mental illness. What are your thoughts about this? What needs to change?
Too often when such events occur, misperceptions about mental illness are reinforced and stigma becomes more entrenched than ever. The public needs to know that those with mental disorders are more likely to be the victims of violence than its perpetrators. When violence does occur, it’s because something has gone terribly wrong. Far too many people who need treatment for their mental illness don’t get it. Some say these people have “fallen through the safety net” but the safety net hardly exists and what’s left is frayed and filled with holes. Nationwide, our mental health care system is broken. The victims of this failure are not just those who were injured or died, they are the Jared Loughners, James Holmes, and Adam Lanzas. When tragedies involving mental illness occur, all of us, including the news media need to ask the hard questions about what went wrong, and we need to take the necessary steps to institute change.
How did you approach finding services within the system and was it easy or difficult.
Very difficult. Doctors often refused to talk to us because of privacy laws, even though we were the ones taking care of Max and trying to get him the best treatment possible. Worse, we could not get him hospitalized. We were told he wasn’t sick enough—not a danger to self or others. In other words, we should try again if he tries to kill himself—that is if he doesn’t succeed.
Were resources offered to you or did you have to ask questions and do your own research?
In the beginning I didn’t even know what the questions were. I educated myself and I found NAMI. I took NAMI’s Family-to-Family class, found other families like ours, got support, learned about the “system” and became empowered to fight for Max. I tell everyone who loves someone with a mental illness to find NAMI.
How about your overall outlook on life, how has that changed?
I’ve learned to step back and let go a bit. There’s a lot of freedom and relief in doing that, and it’s better for Max. I’ve realized that he needs to be in charge. I don’t bug him about meds or appointments, or try to tell him what he needs to do. He knows what works for him. He knows that the family is always there for him if he needs help. He and I are very close and there’s a lot of trust, even more so since we wrote Walks on the Margins together.
Tell us about your social media and some of the things you have done to bring awareness?
I became a vocal advocate because I was angry that we could not find help for Max and because so much stigma exists. Last year, he and I published Walks on the Margins: A Story of Bipolar Illness, in which we tell our story in alternating chapters. He writes from the inside of illness; I from the outside trying to understand and find help.
Tell us about your book?
We wrote the book because we want those with mental illness and their families to know that they aren’t alone and we want to educate those who don’t understand what it means to struggle with these illnesses. We want to break through the barriers of stigma, to put a face on illness because that’s when things can change.
Kathy, thank you so much for your touching story and your insight as a parent. I can only imagine how difficult the beginning of your journey was for you, your family, and your son. As someone who looks forward to becoming a mother some day, I admire any mother who can remain above the raging waters that often comes to destroy us. Keep it up. Looking forward to reading your book.
I wish you all the best.
Connect with Kathy:
Kathy speaks at various venues around the country as an advocate. You can connect with her here:
To arrange a speaking engagement or just to connect find Kathy at: www.kathybrandtauthor.com
Contact Max at his art website: www.maxmaddox.net
Max and Kathy’s Facebook page: https://www.facebook.com/KathyBrandtAuthorPage
Kathy on Goodreads: https://www.goodreads.com/author/show/271903.Kathy_Brandt
Follow Kathy on Twitter at: https://twitter.com/KathyBrandt1
Stay tuned for tomorrow’s personal story. We’ll learn about a mom who has had to face a paranoid schizophrenia diagnosis and what keeps her grounded through it all.