I was raised by a mom diagnosed with paranoid schizophrenia. Back then, in the late ‘70s and early ‘80s, not even the so-called Ph.D’d professionals knew what was going on or how to deal with “crazy.” And if they didn’t know, we – my immigrant English second language family – couldn’t possibly have known. It’s part of why mamma went without any kind of treatment, hearing voices and seeing things that really weren’t there, for far too long, making her a danger to herself and to us.
I still can’t shake memories of a 14-year old me in 1979 helping my papà commit mamma to a hospital psych ward. Part of me exhaled in relief, knowing we were rid of her, even if only for a little while. Another part of me became consumed with guilt over what I then didn’t fully understand had to be done.
For much of my life, I tried to separate my parts, doing my best to distance those genes of insanity that I had inherited through no fault of my own. I kept my mamma at arms-length, afraid of the demons she battled and the parts of her she could not control. And I kept our family’s schizophrenia a secret from the outside world, lest I be subjected to the stigma and discrimination by association.
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Loving What Is (Even When You Don’t)
Hindsight is always 20/20. But when you’re in the thick of things, when you’re actually living and experiencing whatever “it” may be, more often than not, the why of it and the “what now” of it aren’t as clear.
As was pointed out to me by world-renowned author and self-help mentor Martha Beck, throughout my entire life, madness has either been tracking me or I’ve been tracking it. And I’ve pretty much cursed my fate and damned my family tree all along the way.
What I didn’t realize until recently, however, is that while I may have cussed and fought and rebelled and even run from the imperfect and unpleasant and unhinged in my life, I also found a work around. Or maybe “work around” isn’t wholly accurate. What I found, it turns out, is magic within the madness. I, without necessarily planning it (at least consciously), somewhere deep in my soul, believed enough in me — the POWER in me — and everything greater than me to integrate and work with the “it” of insanity (no matter what that insanity might be).
Secret to Survival: Care Less when Caregiving
Growing up as a first-generation Sicilian with “English Second Language” parents immediately turned me into the family translator (or, as first introduced in the infamous “Godfather” movies: the consigliere – a position of 
leadership counsel within the Mafia). My being raised by a mom who was diagnosed with paranoid schizophrenia, and who was barely able to care for herself, let alone her four kids, added to my role as la piccola mamma (Italian for “little mother” as my father often called me). Add to all that, my younger sister also being diagnosed with paranoid schizophrenia when we both were in our twenties, and to whom I became official guardian, and the trajectory into the bigger role of family caregiver is one I took on, whether I wanted to or not, beginning at the age of ten and continuing well into my 40s.
I have a lot of experience as an “unintentional” caregiver. And first thing I know to be true is that few people actually sign up for the role. With rare exception, it just seems to happen. Someone gets sick. Someone loses an income. Someone is born with a major disability. Someone is not aging well.
When it comes to caregiving, it’s always about someone. Someone else.
And that’s where I think we caregivers get into trouble. That’s when we begin to lose ourselves. That’s when we might resent that someone else. That’s when we feel stuck, alone, trapped. And that’s when we’re no longer what’s best for ourselves, let alone someone else.
Mental Illness and Mamma
Mother’s Day is hard for me. The fact that it falls in the very same time frame as Mental Health Awareness month makes it even harder.
As fresh-off-the-boat Sicilians, my parents practiced their own form of Cosa Nostra, and we were taught that what happened within the family, stayed inside the family. It was “Our Thing” and nobody else’s business. As a result, I became a master at keeping secrets, making it all the way to the 8th grade before anyone discovered ours.
Then came Christmas morning 1979.
Like all good Catholics, my father, my siblings and I were racing to leave the house and get to our local church for ten a.m. mass. The church was notorious for being “standing room only” on this one day of the year. Mamma hadn’t joined us for years, so when she appeared at the top of our staircase, dressed from head to toe in Scarlet O’Hara red (the very color she never wore and didn’t approve of her girls wearing), I knew we were in trouble. My father, on the other hand, chose to believe it was a Christmas miracle, gifted to him by God after years of prayer, asking for an end to the demons that tormented his wife.
Mamma spent her nights sitting in the dark on the sofa, screaming profanities in Italian, swearing that she would murder us all, plotting and pleading with voices only she could hear. She stashed sharp kitchen knives and my brother’s wooden baseball bats under the bed she shared with Papá, promising to use them if he dared to close his eyes or step one foot into the bedroom. Papá ignored the potential danger, always choosing to sleep in their bed, while I rarely did in mine, trying to stay awake and keep vigil for fear of Mamma following through on her threats. [Read more…]
In Celebration of My Own Patron Saint Papà
Today is my father’s birthday. March 19. He was born on St. Joseph’s Day, a big celebration for Italians, especially Sicilians. As a kid, year after year, our entire family would dress up, pile into our white Pontiac Catalina, and drive to some church or somebody’s home for a “feast of fishes” – a gorgeous display of food, similar to a cruise ship’s midnight buffet, but set up on an altar paying homage to the patron saint of fathers, families, and workers.
It’s fitting that my Papà and St. Joseph would share their day. Fathers, families, and workers: that pretty much sums up what my dad Antonino Milana represented, at least during my lifetime and from my perspective. (That’s me as a baby in his arms; my siblings were flower girl and ring bearer at my aunt’s wedding.)
My mother once told me “Che pense? Papà non ha mai cambiato i pannolini finché mi sono ammalato.”
Screw RIP: Rock it out, Vinster
“I wrote this,” my sister Viny whispered to me once when I visited her in a locked down psychiatric facility where she was a patient, as she handed me a thick, leather-bound book, the words “Holy Bible” glistening in gold on its cover.
“Catchy title,” I remember responding, one of my usual flippant answers when my youngest sister was off her meds and crazy came calling.
The baby of our family, two years my junior, was diagnosed with paranoid schizophrenia at the age of 24. And so, in a weird deja vu that I wish on no one, a dozen years after having watched my own Papa sign Mamma’s commitment papers, I watched my own hand, as if not belonging to me, sign my own name, taking the lead role this time in locking my younger sister away.
For reasons I still don’t understand, my sister’s repeated going off her meds and descending into madness always seemed to happen just in time for the holidays. More often than not, in January, we would be dealing with her in some facility or just having been released from some facility.
Oddly enough, what I wouldn’t give to have that be the case today. But it stopped on January 17, 2014. Because she stopped, or her heart did. That big heart that always fought for the underdog and loved without judgement and never could be filled with whatever she needed to be at peace, because what she sought could never come from the outside.
I had taken those calls countless times. “Your sister’s fallen out of bed.” “Viny’s been in a fight.” “Viny had to be taken by ambulance to get her meds checked.” It made my life hell. And at the same time, it gave me some bizarre sense of purpose. The last call I took was one I expected to end the same way, with the nurse and I agreeing to some tried and true course of action: upping her meds, bribing with incentives to take her meds, threatening to take away privileges if she didn’t take her meds… Only this last call offered no course of action.
I miss my little sister. More than I ever would have imagined. And I delude myself into hoping that the girl whose dream it was was to be a rock star is now up in heaven jamming with David Bowie.
Screw “rest in peace” – hope you’re “rockin’ it out” Vincenzina – the Vinster – Milana. What a huge hole you have left for those you’ve left behind.
Misunderstanding Mental Illness: How Often It Must Lead to Discounting Physical Ailments & to Keeping Them Secret
“Please, God, don’t make me like Mamma.”
That’s the prayer that became my mantra as a little girl. Morning, noon, and night, it’s what I wished for most.
When I turned 30, I celebrated the fact that my mother’s schizophrenic genes had bypassed me. I thanked God for granting me my freedom from what I feared most: mental illness.
In February of this year, I turned 50. In May, I published The S Word, the first part of my memoir that shares secrets kept while coming of age surrounded by crazy. In June, I returned to my childhood stomping grounds and reconnected with so many grammar school friends, most of whom had no idea what was going on with me and my family back then, but who came to my book signing party as a show of support.
All of these milestones were known to me and planned for. But what I didn’t anticipate was that in July of this year, I would be given a taste of what my mother must have been going through, as my own head began to betray me – not with voices or paranoid thoughts – but with constant debilitating pain, headaches, and a skull that still today is one-half numb. [Read more…]
Hindsight and the Haze of Mental Illness
It has taken me decades to vomit out the story of my coming of age. It’s taken me decades more to put pen to paper, publish, and share it with others. My memoir “The S Word” spills all sorts of secrets, many of which involve surviving my mother’s mental illness, from the late 1970s to the mid-1980s. Having gone undiagnosed for years, Mamma’s rage nearly silenced us all – similar to the actions of people like Andrea Yates whose mental illness drove her to drown her five children in the bathtub in 2001. Only we didn’t know it at the time…how close my siblings and I may have come to a similar fate. 
When we finally learned that my mother’s disease had a name – “paranoid schizophrenia” – the stigma preceding it only added to the reality we all had been living, and we secretly longed to return to our ignorance, still hoping and praying that she had “anything but.” To protect ourselves, we made sure that no one outside of a select few even knew.
Mental illness isn’t like a broken bone that can be fixed or even cancer that has the possibility of being cured. Quite the contrary, mental illness can never be fixed, and it has no cure. At its best, it is tolerated – managed – by cocktails of drugs whose levels must constantly be measured. It is the ultimate never-ending story with ups and downs and twists and turns, and the power to take down not just those who are ill, but those who love and care for them. The fact that mental illness is, indeed, hereditary, only adds insult to injury. In my family, the crazy genes continued, claiming my little sister at the age of 24.
In many ways, mental illness is a death sentence. Or, perhaps, from the perspective of someone who has lived through its devastation not once but twice, mental illness can result in the wish for death, the period at the end of the sentence. [Read more…]
“In Loving Memory”: Thank You, Mamma
Mamma lingered for days on life support. Her final moments had me begging nurses for morphine to end it. “It” being her body convulsing, fighting, rebelling…refusing to give up and let go. “Pulling the plug” is not the serene Lifetime Movie moment where a loved one exhales and serenely slips away.
Mamma’s death mimicked her life. Everything she was, all that she had, she fought for it, she struggled to get it – before and after schizophrenia got her. And yet, even when mental illness took root in her, she fought it, refusing to act on orders from voices no one else could hear. [Read more…]
Why I Hate Mother’s Day
Mom and I, with me wearing the first communion dress she made for me.
Anne Lamott is one of my favorite authors. From the first word I read from her 1995 book “Bird by Bird,” I felt a special bond with this person I had never met. Her recent post on Salon.com wherein she shares her reasons on why she hates Mother’s Day just further underscores why I love her. She writes: “It celebrates the great lie about women: That those with children are more important than those without.”
I must admit that I agree with Anne. I’ve regretted, at times, not having had children, and I’ve felt “less than” other women because of it. But that’s not why I find myself hating Mother’s Day. This year, in particular, I greatly despise it. Maybe it’s because this is the year that my memoir The S Word published. Maybe. Or maybe it’s because on this Mother’s Day, I’m finally allowing myself to feel robbed. My coming of age years, especially, suffered due to my mother’s mental illness. Paranoid schizophrenia did rob me of having a mother. But it’s more than that… [Read more…]
