Some thoughts about my mom and her mental illness

My mom was a single mother; this wasn’t a bad thing. I was born in the 60’s, and while it appeared my mom was pretty self-sufficient, where I lived in the working-class neighborhood of Brooklyn, it was considered a faux pas to give birth to a child out of wedlock. My mom knew this and she found a guy who was willing to be listed as the father on my birth certificate. I didn’t know this at the time, but my mom had been married two times before I was born. During her life she was married a total of nine times. Nope, that’s not a misprint. Nine times.

My mom was also a consummate artist. She was also profoundly mentally ill. Her mental illness informed her art and her art informed her mental illness. Knowing my mom as well as I did, it makes sense that she used art as a distraction. It also makes sense that she was married nine times. As her internal world was so chaotic, I sense she was looking for outside stimuli to quell the madness she felt inside, as well as receive some kind of validation that she was okay. During the time my mom was a professional artist her work appeared in over 200 shows. She worked in various mediums (plaster, ceramics, sculpture, pottery, pen and ink, etc) but her best work was done in either oil or acrylic. Today, artists mount their work between two pieces of clear Lexan or Lucite. My mother’s work was mounted between two large pieces of glass, held together by large machine bolts/screws. Felt washers were used on ether side of the washer and bolt and in-between the pieces of glass. The pieces of glass came shipped to our Brownstone pre-drilled. My mom tried various methods to mount her work, but she was fond of threading the holes in the glass with climbing rope and using a fisherman’s knot connected to some bolts mounted on the ceiling. Not only was she a consummate artist, she prided herself on making sure her art was mounted in a way that could keep her work safe. People would come from across the globe to attend her shows and buy her work. I was proud of my mom and I never tired of people telling me that my mom was amazing.

As a kid, I remember hoping that the constant adulation my mom received about her art would be sufficient to quell the near-constant distress she felt with her various mental health issues. As a kid I remember feeling powerless to help my mom. When my mother took her medication she was at ease in the world: her world made sense, and there was a sense of order in the Universe. When my mom took her medication I felt connected to her. When she kept to her medication schedule my friend’s weren’t scared of her. My mother was also trained as a mental health therapist. When she took her medication she had amazing clinical insight. When she didn’t take her meds, the police were always there. I’m not sure exactly how many times I visited her in the hospital. The diagnosis was always the same:

– Paranoid Schizophrenia with depressed features
– Narcissistic Personality Disorder
– Borderline Personality Disorder
– Sociopathic personality Disturbance, or what is known today as Antisocial Personality Disorder

My grandmother was a social worker and my mom was a therapist. It’s not surprising that I was drawn to working in the mental health field. After reviewing my mom’s hospital records I’m not sure that the last three mental health diagnoses are accurate, however, I am absolutely convinced she suffered from Paranoid Schizophrenia. She had command hallucinations which convinced her I was the spawn of Satan and that the only way to save the world was to end my life. During her last hospital stay the entire team met with me and my grandparents and they disclosed my mother’s plans to end my life. There were enough clues along the way but nothing extreme enough had happened which prompted the state or my grandparents to remove me from my mother’s care. I came to live with my grandparents, but I was extremely sad as I felt like I was abandoning my mom.

Have you seen A Beautiful Mind ? It’s an amazing film that does a wonderful job of illustrating mental illness, specifically paranoid schizophrenia and delusional episodes. While I have never met John Nash nor do I know anyone who knows him, I can relate to how his wife felt living with someone who was profoundly mentally ill. Unlike John Nash, my mom was never compelled to create a room full of chaos. She kept most of her delusions in well over 600 scrapbooks. My mom was obsessed with numbers, colors, shapes and abstract information. If she saw the number 5 on TV, she would collect five objects that represented that number. If the numbers on TV were a certain color, she would collect pieces of paper in that color: the word ‘White’ would become part of her delusion and she would collect a large number of objects that were white. As ‘White’ has five letters she would fixate on the number five. Much like someone with OCD engages in the compulsion to relieve the distress, my mom was compelled to focus on her delusions to feel safe. After I was sent to live with my grandparents, I inherited all of my mom’s scrapbooks. I tried looking through them to see if I could gain any insight as to how my mom lived her life and navigated her world. After paging through many of the scrapbooks my grandmother sat beside me, placed her hand on mine and encouraged me to stop. “Todd, even your mom doesn’t understand why she does what she does”. My grandmother was right. I was simply trying to find a way to be closer to my mom. I wanted to help her. I felt powerless.

Growing up with my mom and living with grandparents that survived a genocide certainly shaped how I view mental illness and my work with patients.

I’m not a huge fan of labels. My experience is that when you label something not only do you need to overcome the affliction, you also need to overcome the label. I certainly understand why a label or a DSM code is applied in a mental health setting: they create a sense of commonality with other clinicians, they act a gateway for billing practices, they offer a common language when writing reports or letters, and when clients do not behave in a clinical setting the clinician can blame the patient versus take responsibility for their inability to make any progress with their client. Unfortunately, labels also tend to marginalize clients, especially people who are poor or low-income. People with greater financial resources tend to have less social problems. Clients without the aid of financial support are the behest of agencies which are overloaded, and they often are willing to apply a label to make quick work of a new admit. As I’ve worked as a clinician in a variety of agencies and with clients on either side of the financial spectrum, I’m convinced this point-of-view is accurate. I’m also embarrassed to admit that early in my clinical career I was entirely too generous with the application of labels on a host of clients. I’m reminded of many assessments and letters and documents that were rife with the misapplication of whatever diagnostic assessment impressed me at the time. I’m grateful that I have grown as a clinician and have grown past the need to both marginalize and stigmatize clients seeking help.

I have suffered with depression for most of my life. After taking meds for well over 50 years, I finally found a combination of medication that works, thanks to a profoundly talented psychiatrist. I think of mental illness as being on a spectrum, and I’m certain that if most people peeked at the DSM 5 they could probably identify with some of the characteristics of any of the diagnostic criteria. Chronic mental illness is a bit different. I think of chronic mental illness like a radio station: most people who are not mentally ill have the ability to tune into one station; my mother lacked this ability. Attendant to the illness of Schizophrenia belies disorganized thoughts. I’m not sure my mom ever felt normal or had the ability to have coherent and cogent thoughts. Most literature suggests that symptoms of Schizophrenia manifests before the age of 19. While I never had the opportunity to meet any of her family, I have heard enough of her background to determine that my mom suffered from early-onset Schizophrenia. She likely heard voices and suffered with hallunications and delusions while she was in Kindergarten.

As hard as it was for me to accept my mom’s mental illness, I am absolutely certain it was just as hard for her to accept that her brain did not function as a normal human being, whatever normal is. I saw a great bumper sticker that said normal is a setting on a washing machine. I think that is pretty spot-on. My mom represented two extremes of a great mind: a tormented human being in her own thought prison and a fantastically talented artist with the capacity to produce great, original work in various mediums which were lauded by art critics throughout the US and the rest of the world. The people who knew my mom suggested she was a great artist and a consummate therapist. I think they were right.

When I was a kid I used to believe that my mom ruined my childhood. I blamed her for creating so much chaos in my life. I assumed she did this intentionally. I grew up in an environment of catastrophic violence. Whenever I had a hard time I’d point to my mom: I never developed the coping skills needed for a decent life, I developed PTSD because of my mom and her poor choices, I attracted women who weren’t good for me as I had a poor role model. While this is great fodder for a therapy visit, it’s also a fantastic way to stay ‘stuck’.

Here’s what I know and believe to be true: my mom did the best she could with what she had. She was incapacitated and couldn’t have functioned any other way. She was living with a disease that affected the way she behaved and thought about people, and the world at large. Further, I have a sense of what it was like for her to live with mental illness – both of these experiences allowed me to experience compassion for my mom and have some understanding of her illness.  While my mom was sufficiently impacted with mental illness, she also knew that she couldn’t care for me and let my grandparents raise me. In her mental fugue she had enough clarity to make a decision for my own well-being.

My mom also valued education (she possessed a few graduate degrees) and insisted I followed-through with my own education. She valued self-sufficiency and when she took her meds, she would remind me that I had the fortitude and capacity to survive. While I lived with her pain and confusion, this experience has remained a catalyst for my friends, sponsees, and clients: when people talk to me I’m not shaken by their disclosures. Being able to listen to the pain of another person without flinching is a very concrete experience that allows me to witness humanity, and can to a large degree, allow people to feel safe. I’m also keenly aware that my mom wanted to take her own life on several occasions. Had she done that I wouldn’t be here. Because of my mom I had an amazing relationship with my grandparents that would have never been possible had my mom been born without any kind of mental illness.

I never had the chance to meet with my mom before she died, our relationship was strained and she refused to see me, fearing that spending time with me would kick-start the machinery to bring about a dystopian society. I am sorry she suffered from diffuse mental illness, but again, I am thankful my mom allowed my grandparents to adopt me.

Before my grandmother passed away, she told me to never relent, come from a place of hope, strive, to grow, evolve, and make a noise big enough that the entire world will take notice. I suspect that was her final gift to me.

Was I affected by my mom’s mental illness? Certainly. Do I have more work to do? Absolutely. While I can focus on what I didn’t get and be upset that there are places in my life that feel incomplete, I am left with a striking revelation: there are gifts in the darkness.

However you choose to deal with your own distress, good luck on your path.