Making Mental Health an Ongoing Priority:  A Patch Adams Approach

On May 6, 2021, my brother, Leonard Casciano, died suddenly of a massive heart attack.  Len had been in ill health for years,  greatly exacerbated by the psychiatric treatments he’d been subjected to. I wrote my essays “Mental Hell-Care: My Sibling’s Story” and “Making the Transition to Compassionate Care” for Mad in America to journal parts of my brother’s unnecessary suffering and premature death in our very broken mental health care system.

My brother’s passing hit hard.  My four sisters, whom I love dearly, handled his death much differently than I did.  There are many reasons for this, but it is due in large part to my being involved in mental health advocacy for over 20 years, the last two or so specifically on behalf of our brother.

Len’s death coincided with National Mental Health Awareness Month, established in 1949 by Mental Health America (MHA) to raise awareness of the importance of mental health, reduce stigma, and celebrate recovery from “mental illness.” The overlapping events gave me the idea to spend the month of May making small but very personal efforts to both honor his memory and move the U.S. mental health conversation forward.

Our Current System

The topic of “mental illness” comes to the forefront of national discussion after tragedies such as mass shootings or national emergencies such as the current COVID pandemic.  In response, the voices of the most powerful advocacy organizations promote stories and data advancing the same old strategies that seem to be failing our country.

MHA, like many of these organizations, is guided by the disease model of understanding behavior and emotional distress. This model focuses on early recognition and treatment of potential mental health problems, similar to how our medical system views the progression of a physical illness.   MHA’s 2021 report, The State of Mental Health in America, is depressing to read.  The report’s summary alone forecasts a dismal outlook for our country, with the number of people becoming “mentally ill” soaring higher than ever.

MHA’s key findings indicate more and more children and adults are becoming sick with “mental illness.” Even prior to COVID 19, mental illness among adults had continued to climb, increasing by 1.5 million people over the last year. The number of U.S. citizens experiencing frequent thoughts of ending their life or inflicting self-harm is at a record high. The number of individuals seeking treatment from psychiatrists, psychologists, and other professionals for feeling sad or anxious has skyrocketed to the point that professionals cannot keep up with the demand. The report also shows that the percentage of uninsured adults with “mental illness” increased for the first time since the passage of the Affordable Care Act.

This burden is not distributed equitably. Black Americans averaged the highest increase in feelings of anxiety and depression, while Native Americans had the highest increase in suicidal thinking.  MHA statistics show that New Jersey, Texas, and New York had the greatest number of residents considered “mentally ill,” while Idaho, Vermont, and Oregon had the lowest.

Signs of Hope

Worst of all, MHA’s gloomy annual reports offer no recognized path to recovery. Yet I know there is hope, based on my own and my brother’s experiences and those of many others.

Earlier this year, a psychiatrist with a background in nutrition took immense interest in my brother’s case. Previously, he had become incapacitated by forced psychiatric treatments. Her insights shed new light on how to help him and we were finally on the right track.  My kindhearted sister, RoseMary, who lent support to my brother from beginning to end, wrote the doctor this note of thanks:

“….You gave us all the hope in the world Lenny and our family needed.  You showed with proper diagnosis, proper medications, and family support  that he had an amazing turn around. It fueled him.   It was only going to get better.  It was a treasure to see his communication, his (huge) appetite and mobility come back to him.

I loved when you allowed me special hours to bring him his favorite foods. He would say ‘Got anything else in that bag? Got any ice cream in there? Did you bring any cookies?’

He was making me laugh.  And he had to have me read the note I put in the book to you so he could approve of what I said.  To see his mobility come back peeling the bananas, opening a soda can, using utensils, enjoying phone conversations once again.

We saw him come alive before our eyes. So alive.  It was nice to hear the aides say ‘Just offer him a sherbet, he cooperates just fine.’

You provided us the tools. This is why [his death] is so hard to take.  We were blessed to have you care for our brother.  You are most intelligent and will be able to help many with your gift.  You brought us hope and rightly so.  I will keep in touch.”

The psychiatrist replied, “This is why I became a doctor.” She plans to write up his case so it can potentially prevent the suffering of others.

Fostering Dialogue, Supporting Alternatives

For these and a variety of personal reasons, I feel it is very important to support mental health awareness.  Issues surrounding “mental illness”  can be sensitive, involve stigma, and create controversy.  Our nation has divided alliances based on very different and often opposing belief systems on the topic. Throughout my involvement as an activist, I have always tried to maintain a stance of respect and thoughtfulness in communicating with those involved in mental health treatment or advocacy.  It is important to learn from all sides and not just those who maintain a position that has the strongest influence on outcomes.

In order to truly fix our broken mental health care system, fostering inclusive dialogue with all stakeholders must somehow be achieved. That is why I decided to take a “Patch Adams” approach to mental health awareness—the very human, personal, joyful, and community-centered approach Dr. Adams describes in the video below.

I began my mission by treating myself to a manicure, selecting blue polish for my nails to reflect my desire to contribute to an environment of peace and tranquility.  Whenever possible, I shared, and continue to share, personal stories and encouraged and listened to others as they told their own mental health stories.

Another gesture of positivity I made was on the day of my brother’s memorial services in Syracuse, New York. One of the last vacations my brother had enjoyed was in Clearwater Beach, Florida.  He loved this beach, and to duly honor his life, I spent the day there.  I played songs with special meaning and engaged in prayer and meditation.  I drew an “L” and a huge heart in the sand.  Inside of the heart I wrote the names of dozens of individuals whose lives ended because of factors related to “mental illness,” including suicide or murder.  Some of them I knew personally and many others through advocacy.  The youngest was six months old; the most well-known, Robin Williams, was 63–Len’s age.

After several hours at the beach, I felt tremendous peace and serenity.  On my way home, I stopped to visit with the Executive Director of the Citizens Commission on Human Rights, Florida (CCHR) and made a $63 donation in honor of my brother’s birthday this past April.  During the past five years of advocating on his behalf, I found the information provided in CCHR documents and DVDs invaluable.  Though some consider the group controversial, it is the only independent organization that assisted my family with filing a complaint on a psychiatrist who arrogantly denied my brother obviously-needed medical treatment.

I spent an additional hour that day touring CCHR’s “Psychiatry: An Industry of Death Museum.” The museum features shocking images of documented human rights violations by the medical establishment against individuals of all ages, races, colors, and creeds. It is a difficult place to tour because it shows a truth that most cannot handle. It helped me to realize that as bad as what my brother went through, others have suffered far worse, and society has historically turned a blind eye to it.  Unlike so many, he was blessed to have family who stuck by his side and advocated on his behalf.

Another organization to which I made a $63 donation was this one. As longtime readers know, Mad in America is a nonprofit founded by Pulitzer-Prize-nominated journalist Robert Whitaker. Among other things, the webzine he created in 2012 is a place for those of us who want to share personal stories, like my brother’s, that would otherwise go untold.

The site is named after Mr. Whitaker’s 2002 book, Mad in America: Bad Science, Bad Medicine, and the Enduring Mistreatment of the Mentally Ill. It provides an accurate and deeply researched history of the treatment of the severely mentally ill in the United States from colonial times until today.

Because “mental illness” has impacted my own life in many ways, I found Mad in America an extremely difficult book to read, but I am glad I did.  For over a decade, I have corresponded with Mr. Whitaker, read his other works, and met up with him at a conference here in Florida.  I have found him to be an honest person who can handle criticism well, as he has met with my “tenacious side” more than once and is still willing to communicate with me.

The Power of Small Things

Over the years, Mad in America has spotlighted many scientifically validated and exciting alternatives to the medical model of mental health care, including things one wouldn’t necessarily think of as “treatment,” from grassroots peer support groups to playing music to volunteering. I have found my job as a part-time cashier at a big-box retail store to be good for my own and others’ mental health. My background includes growing up in a tight-knit Main Street community and working in a family-owned and -operated grocery store.  At an early age, my father instilled in his children that providing personal service in a community business setting can be extremely rewarding.  For me, being a cashier is a very easy, low-stress, and fun job. It is a good fit for my work-life balance.

In the past, I have had people comment that my job is menial, and that I should be doing more with my life.  My reply has always been the same: “While my job may not seem like much to most, on a busy day I can have one-on-one interactions with over 500 people of all ages, and sometimes just a polite voice, a smile, or giving a child a sticker can make a huge difference in a person’s day.”  With customers, fellow employees, and management, I often joke that we provide more than retail services; we provide “retail therapy.”

During the COVID pandemic, the company I work for created additional positions for cart-wipers and point-of-entry greeters.  Our greeters are absolutely amazing.  They radiate positivity and are shining examples of how attitudes can influence the culture within a business and the surrounding community.

Throughout the pandemic, I would FaceTime with my brother as much as possible.  While at work, one of our greeters would often chat with him and he would always light up at the sound of her sweet voice.  During a time he could barely move, he made an effort to raise his hand and say “Hi” to her.

On May 6, I was working my shift when I received a slew of text messages from my sisters begging me to call them right away. So I stepped away from my register and that’s when they told me about Len.  She said they would wait to make arrangements until my husband and I could fly up from Tampa to Syracuse.

I told her not to worry about me and went back to my register, choking up but not really in the mood to inform my coworkers I needed to leave.  I would rather work than receive acknowledgment of my brother’s passing from coworkers before processing his death with my husband and family.  Having a face mask on helped hide my expression.  Not knowing what was going on with me, the next guest at my register, a stranger, managed to lift my spirits and ease my heartache.

Like a ray of sunshine, she gave me an enthusiastic greeting, pointed to her colorful T-shirt, and informed me that May 6 was National Wishbone Day, an effort to create awareness of osteogenesis imperfecta (OI) or brittle bone disease.  Her 10-year-old daughter was born with OI but is doing well. This woman’s conversation and positive attitude helped me instantly.  As she walked away, I set the intention of honoring my brother with a tsunami of positive energy, integrity, and a passion for life.

Len’s Life Was a Beautiful Ride

Together, my four sisters spent many hours and late nights planning every detail of our brother’s memorial, including beautiful Catholic services. They chose the theme “Life is a Beautiful Ride” to honor his passion for cycling.  They sorted through piles of photos to create posters, purchased him a new suit, and selected meaningful items to place in his casket.

The priest who gave the services picked up on the “Casciano way” and made a well-received humorous remark about my brother growing up with five sisters and for that alone should be made a saint.  My sisters and nieces all wore an “L” pin in his honor and my nephews were pallbearers.

The church –the same one my brother was baptized in–was filled with family and friends, who showered him with love while paying their respects.  My sister said that at one point, there wasn’t a dry eye in the place.  My brother was well-loved by many and will always be remembered.

I was there in spirit, and cherish my own memories of him as a hardworking, easygoing, nonjudgmental, fun-loving person who was tough as Teflon and protective of others.  He never held a grudge or got involved in drama or gossip, and created a home that was always peaceful and welcoming.  He walked with confidence, knew how to create lasting friendships, demonstrated competent leadership skills, and always held compassion for others.

When he turned 50, he became fitness conscious.  Besides being an avid cyclist and regular gym-goer, he immersed himself in the study of Jeet Kune Do, conceived by martial-arts master Bruce Lee.  He shared Lee’s philosophy, “Be like water,” and always showed discipline, amazing resilience, and unyielding faith backed by steadfastness of heart and mind.

My brother Len taught us so many valuable lessons by example and was a great mentor.  He died fighting a battle not only against a debilitating medical condition but also a very broken mental health care system.  I am grateful for all that we have shared and plan to carry on with the same strength, courage, integrity, and steadfast faith to promote mental health, end stigma, and transform this system into one that truly meets human needs.