How to Cope with a Child’s Mental Illness: An Interview with Author Miriam Feldman
by Gina Simmons, Ph.D.
When a parent discovers their child struggles with a mental illness it can be devastating. Parents need support to help them emotionally cope while they navigate the complicated mental health system. I am thrilled that Miriam Feldman agreed to this interview to talk about her riveting memoir, He Came in With It: A Portrait of Motherhood and Madness, a story about her talented son’s struggle with schizophrenia. Schizophrenia is an incurable mental illness characterized by hallucinations, delusions, thought distortions, bizarre physical behaviors, and extreme emotional reactions. The illness can often be managed by medications that reduce the hallucinations while controlling emotional extremes. Many patients can learn to live independently with strong support systems in place and ongoing medical treatment.
When I met the extraordinary artist and writer, Miriam Feldman last year, I knew she held a lot of wisdom under her leonine crown of dark curls. We shared a panel discussion titled “Writing About Mental Health Issues” at the San Diego Writers Festival. Miriam read a portion of her stunning memoir to rave reviews by the audience. Parade Magazine named He Came in With It one of the best memoirs to read this year. I hope you enjoy our conversation!
G.S. What inspired you to write this book about your son?
M.F. I originally was driven by the desire to put something out into the world that might make mothers like me feel less alone. The first few years of Nick’s illness I felt so isolated, like no one in my life had experienced this or could relate. I came to realize that almost everybody deals with mental illness in some form during their lives, but serious mental illness is rarely talked about. It is extremely difficult for the family, causes a lot of conflict and strife for everybody. I was very honest in the book about that aspect of things. Many marriages do not make it through, siblings deal with the fallout. My hope is that this book, which describes all of that in my own family, will opens portal for others to talk about it.
G.S. When did you first discover that your son had a serious mental illness? What behaviors did he exhibit?
M.F. If you were to make the list of red flags for serious mental illness and the list of normal teenage behavior, you’d have virtually the same list! I mean, they are all mercurial, impulsive, irrational. At the time, Nick’s drug experimentation seemed no different than his peers. We dealt with it as though it was normal. As far as I knew at the time, he was only smoking marijuana. We did what we could to forbid it, but honestly, as a child of the sixties, I didn’t think it was that big a deal. Of course, I have learned since that not only is marijuana very detrimental to developing brains, but the pot of today is exponentially stronger than it was in my day.
As his drug use expanded, we started to address that as the problem. We sent him to rehab and to a therapist. We hoped it would be a teaching moment for his siblings. You see, I wasn’t considering the drugs in relation to mental illness because that wasn’t even in the equation then. Now, I see that he was absolutely self-medicating. I can even recall a conversation where he told me he was disturbed by his own thoughts, “the voices in his head.” I told him not to worry about his thoughts, what mattered were his actions. I said we all have weird thoughts, nothing to worry about. He was telling me he was hearing voices and I dismissed it. But how could I have known?
In the beginning, my husband and I were at odds about everything. He thought we just needed to be tougher on Nick, I enabled every bad behavior. Neither approach was the correct one, it took many years to find a reasonable middle point.
This takes us back to the importance of forgiving ourselves. Even if it is only intellectual, if in our hearts there is a part of us that will never quite believe it’s not our faults, we as parents have to continue to consciously remind ourselves to try and let go of that. It serves no purpose.
G.S. What feelings did you struggle with and how did you cope with those emotions?
M.F. We lived in such a state of emergency for years, I didn’t have time to process very much. I just stuffed it all down and soldiered on. I have a very clear memory of when I moved away from the chaos. There was a period, about five years in, when Nick had become stable on his meds, the girls were growing and off to college, and I felt like things had settled down. As the hurricane around me calmed I emerged as a shell of a person. I was completely depleted. I remember thinking, “okay, now if I can just tread water, keep things contained until I die, that will be success.” What a terrible succumbing that would have been. Luckily, I had started a yoga practice and was beginning to internalize some the precepts of yogic philosophy. One day I was walking to a friend’s house and decided to go barefoot. I wanted to feel the different surfaces on my feet, cement, grass, asphalt. Walking through the neighborhood I began to come alive a bit, just being in the moment and feeling the sensations. It ignited something in me.
That night I decided that it would serve no purpose for me to just resign myself to the remainder of my life listlessly. Would my misery help Nick? Would having a zombie mother be good for the girls? I had wrestled with the guilt and responsibility all mothers feel for so long, but in that moment, it was crystal clear, this wasn’t my fault. I was allowed to have joy in my life. It wouldn’t hurt anyone; it would make things better. Since that time, I have actively sought the good. It’s not easy, but it is worth it.
G.S. What did you find frustrating about navigating the mental health system?
M.F. The biggest roadblock to parenting an adult child with serious mental illness is the HIPAA privacy statute. These standards were implemented with the intent to protect medical information, but in this case make it nearly impossible to manage your loved one’s medical care. Most often, the parents are the ones with the pertinent information about their offspring’s condition (symptoms, medication compliance, obstacles to care) and they are shut out of the process. It is important to remember that in the case of schizophrenia, the organ that is afflicted (the brain) is the organ that would allow them to understand and manage treatment. One of the symptoms of schizophrenia is anosognosia which is lack of insight or awareness of the illness. When Nick turned eighteen, we had a couple of terrible years when he refused treatment and we were helpless. Early intervention is crucial to recovery. The only way to force him into treatment was involuntary hospitalization. The criteria for that is stringent. One must be of imminent danger to themselves or others or be gravely disabled. I would seize every opportunity to try and get him into the hospital, but most of the time they would only keep him for the requisite 72 hours and then release him. This is one of the most important changes that we need in the mental health system. It is so difficult to obtain care, even when the patient is willing, that precious months or years are often lost before consistent treatment is secured.
When Nick was a minor, we had more control, but his disease was in the nascent stages and we were really just scrambling to figure out what was going on. Once we knew it was serious mental illness our hands were tied. We spent a few years helplessly watching his condition deteriorate, and then miraculously at age 21 he decided to sign the HIPAA release. Since then it has been easier in some ways, but as they mature into adulthood you have to reconfigure the paradigm of the parent-child relationship. I don’t have the option of “letting him live his own life”, which is the transition most parents have to make. I have to calculate the formula for allowing him to be an independent person without opening up a path to calamity or decompensation. It isn’t easy.
G.S. What did you find most helpful in your journey to help you and your son cope?
M.F. The single most helpful thing was the Family to Family program at NAMI. It is a 12- week educational seminar that takes you through all the aspects of this thing, the science, the medicine, the system, the laws. Knowledge is power and without that I would have been lost. It sent me into the game with some tools I could use.
G.S. What advice would you give to other parents concerned about a child struggling with a mental illness?
M.F. I’ll tell you, one of the only benefits of having serious mental illness in the family is that it gets your priorities in order! After a few years of pretending, I realized what a pointless waste of energy that was. Pointless because when the police have repeatedly taken your screaming son off your porch and into a squad car, the neighbors have pretty much figured out there is a problem. I was stretched to capacity already; I couldn’t keep up the façade. I had to reshuffle my objectives and prioritize. The things that got tossed onto the trash heap first were pretending, hiding, being ashamed, and trying to fix everything. Having a kid with schizophrenia makes you officially “embarrassment-proof.” Those things just don’t matter anymore.
The thing I’d like to convey to other parents is that this is a very freeing moment. It really was a gift to clearly see what was important and what was pointless. We have to let go of how we thought it was going to be, who we thought they were going to be. This is how they came to us. It is our job to love them and help them as much as we can. The sooner we release our grasp on preconceived notions, the sooner we can move forward to meet our children where they are. Remember, they didn’t ask for this either. The real tragedy is for them. If, on top of that, they also have to shoulder our dashed dreams and disappointment it would be crushing.
And I do want to say that practicing acceptance does not imply the abandonment of hope, quite the opposite. Once I made my peace with the reality of schizophrenia, I was able to find happiness and hope in lots of things. Nick’s smile still changes my whole day.
G.S. Thank you Miriam for sharing your wisdom with our readers. I know that many families struggle to accept that their child might have a mental illness. Getting professional help and support can provide the coping skills and resources families need. Modern medicines and therapies can help those that suffer to lead full and meaningful lives. Here are some resources for families seeking help: