As the executive director of the Greenburger Center, I have listened while parents describe the terror and heartbreak of watching a child experience and respond to hallucinations, delusions or visual distortions. I understand not only their heartbreak, but the terror of their children. 

My children and I have Todd’s Syndrome, more commonly known as Alice in Wonderland Syndrome (AIWS). Some scholars suspect Lewis Carroll, author of “Alice’s Adventures in Wonderland,” lived with AIWS. Having experienced the symptoms firsthand, Carroll’s illustrations and descriptions are strikingly familiar. 

AIWS is a rare perceptional disorder. The most common symptom is altered body images; as in a person sees other people’s or their own body parts, often heads or hands, as larger or smaller than reality. Some people also have auditory or tactile distortions, hallucinations or an altered sense of time passing either too fast or too slow.

For me, symptoms began showing up at eight, when my mother’s head, then body, began to shrink, and I or maybe she seemed to slide down a tunnel as she sat on my bed reciting our bedtime prayer. For the next several years, the distortions or visions came and went.

Sometimes people or things shrank, other times they grew. Then one day it all stopped. As terrifying as the visions were, more terrifying was the thought of being sent to Greystone, and it’s why I told no one about my tunnel-visioned travels for almost 30 years.

Greystone, the brainchild of Dr. Thomas Story Kirkbride, was a psychiatric facility near my hometown in New Jersey. At least as conceived, Greystone represented a major shift in how the U.S. treated those with mental illness. Kirkbride subscribed to the “moral treatment movement” believing people with mental illness were “human souls deserving of kindness and charity” and could be treated. 

Set in bucolic settings, Kirkbride asylums like Greystone were carefully designed and meant to be places for rest, structured activity and seclusion from “suspected causes of illness.” Programming was designed to build community, fostering healthy relationships through social activities and outdoor recreation. Eventually, 139 Kirkbrides were built across the country. 

Sprawled over 700 acres, Greystone had its own occupational and vocational therapy buildings, post office, dairy, farm, water supply, and fire department and was a vast improvement over more common 18th and 19th century “treatments,” including keeping people with mental illness confined in cages, outdoor stalls, or unheated basement pens, often chained and naked, “beaten with rods, and lashed into obedience.”

Many viewed people living with mental illness as “mad…like wild beasts devoid of all reason” who deserved to be “brutally domesticated” as “immoral sinners and degenerates, possibly even demonically possessed.”

Despite the founder’s intent, Greystone became an infamous psychiatric hospital. Originally built for 250 patients in 1876, by the early 1900s it held more than 7,000 residents. Overcrowding, and insufficient funding were to become two key factors leading to Greystone’s eventual failure, in addition to the increasing reliance on psychiatry and psychotropic drugs, and the de-institutionalization movement of the 1960s and 1970s. 

But at age 8, I knew nothing about Kirkbride, the moral treatment movement or why these visions kept happening, so I kept quiet, until one night while reading a bedtime story to my 7-year-old daughter she said, “Mommy, your head is small.” She was “Alice-izing” before my eyes. “It’s OK” I said. “It happened to me when I was little. What do you see?”

Some months later she also developed tactile and auditory distortions but as we talked and actually laughed that night, her younger sister sleepily shuffled into the room. She would Alice-ize with her own visitations just a few years later, complete with auditory and tactile distortions, and on one occasion, a hallucination, none of which I ever experienced.

Sitting on their bedsides as they fell down the rabbit hole in turn, I was profoundly grateful for having experienced and weathered the storm. The firsthand knowledge enabled me to comfort and safely guide my most beloved through the most terrifying experience of their young lives. It’s why I know there’s no substitute in the mental health wellness process for people with lived experience, trained peers who can help navigate what’s happening on the outside and inside of one’s brain. 

It is also why I feel a kinship with parents who contact me, and feel their anger at a mental health system that has more in common with the early 19th century than we may care to acknowledge. My children and I are lucky as AIWS mostly disappears by adulthood, but for those who live with life-long serious mental illnesses, their journeys can be a living hell.

I have heard from too many parents whose children have fallen down the rabbit hole of our broken mental health system. There, at the bottom of the hole, in that dark place, nothing makes sense, as their children unravel, often in their teens and 20s, their heads filled with headless voices, racing thoughts, or hallucinated characters who argue or command or shame. A few have died by suicide, fewer think about harming others and fewer still actually do.

Believing others are Satan or some equally diabolical character, those very few may burn down a house or push someone off a subway platform, bowing to demands issued by their inner voices. Even though the vast majority of people living with brain disorders, even when untreated, do not harm others, when it does happen it is always tragic and should, though apparently not enough, weigh as a shameful and motivating reminder of society’s failure to treat mental illnesses on par with physical disease.

What I have learned is that the truly twisted part of serious mental illness is not the illness itself, as bizarre as some are, but it is society’s response to those living with them. It turns out, not only does the mental illness rabbit hole need not be so dark, it need not be there at all. Unlike Alice’s rabbit hole, this one is of our own making; it’s real and right before our eyes, grotesque and distorted for all to see.

While we do not have all the answers yet to mental illness, what is crystal clear is that people living with serious brain disorders can be humanely and effectively treated, even when involuntarily committed if that is truly needed. Most importantly, often they are best aided by having access to supportive housing attached to clinic services, skills training, social opportunities, community and peer support, and medication management.

Instead, as we step over those lying in the streets, clearly “out of their minds,” as if we have a touch of AIWS; we see them but somehow at a distance, or maybe that’s just us creating as much distance as possible between them and us, until we do not see them at all. Somehow, they must feel that distance too.

For at that point, they have likely fallen down multiple rabbit holes, losing more of themselves each time, starting with the federal Medicaid rabbit hole where the law is literally designed not to help poor people with serious mental illness by excluding them from coverage for certain long term residential care.

Then there is the emergency department rabbit hole through which one falls almost as quickly as the revolving doors to the ER can turn. One may also find themselves careening through the so-called “crisis stabilization” hole which takes precisely 23 hours and 59 minutes to pass through, to ensure that one does not overstay their “welcome” which turns out to be at the 24-hour mark when the provider can no longer bill for crisis services. 

And then there is perhaps the most insane hell hole of all — the criminal justice system which has become the go to for many. In fact, our jails and prisons have become so overcrowded with people living with mental illness that in the name of reform we are building mental hospitals and units within prisons and jails and calling it progress. I call it the definition of insanity. 

At this point, Greystone looks pretty progressive. 

In New York, treating mental illness has become a top priority. Gov. Hochul’s financial commitments to improve mental health services and Chief Judge Rowan Wilson’s commitment to bolster problem solving courts and call for passage of “some form of the Treatment Not Jails legislation,” represent remarkable and long overdue policy shifts that will benefit us all, because no family or community is immune from mental illness or its fallout.

Little kids like my daughters, the guy sleeping in the subway, the woman living under the bridge or the person decompensating in solitary confinement due to the untreated or misunderstood symptoms of mental illness are someone’s family and they, their families and their communities deserve better.

As another Mental Health Awareness Month comes and goes, maybe there is cause for hope that the playing field between physical and mental diseases is finally leveling. Afterall, as Kirkbride was fond of saying, insanity is the “great leveler.” 

Roberts is executive director of The Greenburger Center in New York City.