Making Mental Health an Ongoing Priority:  A Patch Adams Approach

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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
The author’s brother, Leonard Casciano (1958-2021), biking on the beach in Florida years before his psychiatric hospitalization.

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.

 

 

 

 

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Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

16 COMMENTS

  1. I very much appreciate the calmness and simple optimism of this article.

    I wish the data I have been exposed to made me feel as calm as I would like to feel about this subject.

    Activists have made a good start by recognizing the fact that there is wrong-doing in the mental health system, by measure of our own laws, and informing others of this. Groups like mine have focused on tightening the legal noose around psychiatry, in the hopes that we can reduce the damage being done. But the amount of damage being done is now so appalling! And so I am not that calm.

    All change must start with the recognition for the need of change. This article and this site does well on that score.

    • Hi, and I greatly appreciate your response as yours is the type of reaction I was hoping for to help open dialogue on activism.

      I always like to give credit where credit is due. This was difficult subject matter to write on and MIA’s staff were right on target with editing and refining my submission. I could not be more pleased with how well it reads.

      And trust me, I understand your feelings on not being able to maintain a calm state of being. I have seen and experienced first hand enough of what you are referring to that I have been in many states of total outrage and do not understand why as a society we are not screaming to the high heavens to make change happen immediately.

      The calmness comes only from weathering many storms, the simple optimism comes from trusting higher powers truly are at work and the article itself is an expression of gratitude to honor not only my brother but many others.

      “All change must start with the recognition for the need of change.”

      True.

      Now how can we make that happen?

      One important case I think advocates from all organizations should consider is that of Ryan Ehlis, who in 1999 began taking Adderall, slipped into a psychotic fog, shot and killed his infant daughter, then shot himself in the stomach.

      The criminal court found Ryan innocent after testimony by a psychiatrist and by Shire US, Inc., stated that the “psychotic state” was a very rare side effect of Adderall use.

      The manufacturer of Adderall, commented that “despite the slaying, Adderall remains a safe and effective drug for controlling AD/HD.”

      “despite the slaying”????

      “remains safe and effective”????

      How can we help others recognize this is an unacceptable statement?

      • First I can say this: If a certain number of us can move away from the insanity, particularly on specific issues like Adderall, those who trust us to make smart decisions will go along. This is not ideal, but has been the case on Earth for a long time.

        Second: I have decided to push hard for a better understanding of Spirit on this planet. As long as “mental illness” is seen as a bodily disease, and people agree that drugs are a good way to handle or manage bodily diseases, we will have a terrible time convincing anyone to roll back drug use, even with the horrendous “side effects” that many of us have witnessed or heard about.

        If we can somehow begin to recognize the importance of Spirit in human life, human affairs, and healing, that opens the door to a whole new world of possibilities and understandings. The quantity of data that lies on the other side of that door never ceases to amaze me! And a lot of it IS being talked about on the internet, even if it remains ridiculed in the mainstream.

        The mainstream is wearing out its welcome for other reasons right now. But unless the political structure that supports it totally breaks down, it will never stop trying. And so, we must never stop trying.

        At this point in my life I only have about 20 years left in this body, if I’m smart and lucky. But I fully intend to come back and carry on with what we have started. I have seen others do this, so I am confident I can.

        Though it seems in some ways weak compared to real action, our ability to think and speak freely is the most important weapon we have to fight the insanity on this planet, and particularly in the “mental health” system. Though training in and using proven workable spiritual practices is very important, that others find out that such practices exist and are being used successfully is also very important.

        An example of that is your bringing up Patch Adams. I knew absolutely nothing abut this man, so I am very happy that you do, and referred to him in your article. He is an inspiration for MDs (not just psychiatrists) and though the fact that his approach is very spiritual isn’t that obvious, anyone who bothers to listen to him can clearly see that his is indeed bringing the healing power of Spirit into the realm of medicine, and has done so with great success.

        • Spirit is one of my favorite topics!

          Many times I have had people question my quick decisions and my response is always, when Spirit says move, I MOVE!

          Throughout the journey we had dealing with my brother’s situation, my sisters and I relied heavily on Spirit.

          Have you ever read the book Grow a New Body by Dr. Alberto Villoldo?

          The diet from his book was recommended by a friend as they thought it would help my brother.

          I followed it partially along with the Rainbow Diet and I have some training in massage therapy and other therapies, that I used to help aid my brother’s recovery.

          The results were amazing to witness. His circulation improved, veins started popping out like crazy, his muscle tone came back instantly like Popeye and he went from being immobile to literally running. The results were hard to maintain and an underlying problem was his body was in a state of hypermetabolism which made his condition complicated.

          In my own situation that involved experiencing an acute manic episode in March of 1996 from toxic encephalopathy and being misdiagnosed as having bipolar disorder, Spirit led me on a journey that was an experience I would not trade for anything.

          I think the main problem with Spirit, is Spirit works so quickly, efficiently and is so cheap, Spirit is not good for the economy. Whereas, “mental illness” is quite profitable on many levels, not just for psychiatry and keeps our economy strong.

          • Thank you! I wish this subject were more routinely discussed here.

            Yes, Spirit is quick, efficient and cheap. Thus, it is a friend to the people, and an enemy to their oppressors.

            But I think we could maintain an economy in quite good shape while also using Spirit much more often and in ways appropriate to life in biological bodies on a planet.

            After all, the oppression of the Spirit deniers has resulted in a population that is much sicker, slower, and dumber than what they could be if they were very healthy. With a healthy population, we could have much more production and much less waste.

            I am not very well-read outside of the subjects I have chosen to focus on. That diet sounds great, but I try to keep my sights not on eating or exercise or all those care-of-body practices but on care-of-Spirit.

      • Yes. And how rare, really, is Adderall psychosis? If the general public accepts that “meth psychosis” is real, and not rare, the logical conclusion is that, since Adderall is, like methamphetamine, an amphetamine, Adderall psychosis is also real, and not rare.

        • I know a very good woman whose marriage was ruined, as far as I can tell, because her husband was taking Adderall long after it had served its intended purpose. He would have fits of rage that really frightened her. The social consequences of using these drugs are extensive. A woman with her two little boys feels forced to leave an otherwise working marriage, loses her job, and must live like an outcast in her parent’s home. How many similar tragedies have resulted from the overuse of these drugs?

        • And isn’t just one single slaying of a child by a parent enough?

          Good Lord!

          The U.S. Consumer Product Safety Commission has issued recalls on spiral notebooks, tricycles and bean bag chairs but continues to allow the sale of a product that can cause a parent to kill their own child???

          After Dr. David Healy wrote an interesting analogy on If Pharma Made Cars, I wrote this up for Unite for Life on If Pharma Made Trikes

          https://uniteforlife.wordpress.com/2012/04/04/if-pharma-made-trikes-buyer-beware/

          No other product could be EVER be sold like these drugs are, the manufacturers willingly admit their products suck and are dangerous

          The FDA hearings on prozac took place 30 years ago…why is this drug still on the market???

          Where is our consumer protection???

          Where is our common sense???

  2. Thanks Maria.
    I am sorry you lost a brother and I am very sorry that the “Mental health” and physical health community made his life worse.

    It’s really nice of your sister to write his psychiatrist a letter, but the sentence “I loved when you allowed me special hours to bring him his favorite foods”, made me cringe.

    We should never have to thank someone for “allowing” us to be with family members. And I am not impressed that that shrink did not catch the “allowing” part.
    No, I’m sure she was tickled pink, that she was so kind as to “allow”.

    • Hi Sam and thank you for your response.

      My apologies, I did not catch how that would sound without explaining the hospital my brother was at had very strict COVID restrictions on visitation and what could be brought into the hospital. Because of my brother’s circumstances, the doctor received authorization from administration for my sister and family to have extra visiting hours and allowed us to bring homemade food and food from restaurants. Hospitals can be very strict on their policies because of possible outside contamination and lawsuits. They also put him on a surgical floor so he would have 24 hour supervision but not in a psychiatric ward. The psychiatrist who took on his case was consulting from a different hospital, my brother was her only patient she was seeing and she came every day, seven days a week. She treated my brother and my sisters with the utmost respect and dignity. She really did go above and beyond. I do understand how the word “allow” does sound negative, it was only in reference to COVID restrictions. Good catch, I should have clarified.

      It is good to note that some psychiatric wards can deny patients the right to receive healthy food/drinks from family members during visits as they have experienced cases of family/friends bringing in items like marijuana-laced brownies. And also, unlike medical hospitals, most psychiatric facilities have very limited visiting hours. Sometimes it is impossible for family members to visit loved ones in psych wards unless they take time off from work. Many psych patients who could benefit from family support, miss out because of limited visiting hours.

      A NYS facility my brother was a patient did not allow patients to have bottles or glasses of water. They only got a Dixie cup of water with their medication and could only drink from a drinking fountain throughout the day. My brother complained of being thirsty and would try to drink from the fountain. My sister and I noticed hardly any water would come out of the fountain and we complained to the administration who was unaware. They eventually brought in a water cooler for patients but the lack of awareness and harm to patients being given toxic meds without water to help dilute was sickening. In addition, the meals at the facility were poor quality and lacked fresh fruits and vegetables. As a psychiatric patient myself, I met other patients who came in with only the clothes on their backs, or in some cases, no clothes at all and were given medical gowns to wear. There were times when I gave patients clothing of my own or asked a family member to stop at a thrift store and pick up some items in their size as they had no visitors and no way of obtaining clothing during their psych hospitalization. As a volunteer and community business partner, I was able to help secure donations from retailers for psych wards to purchase items like new decks of cards/puzzles/DVDs/water color paints/socks or other items that patients could use. During my own psych hospitalizations, there were facilities that had nothing for patients to do except for a stack of worn out puzzles, old water color sets and worn out decks of cards. Extremely sad what goes on at these facilities, especially considering no advocacy organizations are working to advance improvements.

  3. While progress is being made on this front, for me there’s still too much platitudinous lip-service towards proactive mental illness prevention for men (and even boys), as well as treatment.

    Various media will state the obvious, that society must open up its collective minds and common dialogue when it comes to far more progressively addressing the challenge of more fruitfully treating and preventing such illness in general; however, they will typically fail to address the problem of ill men refusing to open up and/or ask for help due to their fear of being perceived by peers, etcetera, as weak/non-masculine. The social ramifications exist all around us; indeed, it is endured, however silently, by males of/with whom we are aware/familiar or to whom so many of us are closely related. (Great actor/comedian Robin Williams’ suicide comes to my mind.)

    Even in this day and age, there remains a mentality out there, albeit perhaps subconsciously: Men can take care of themselves, and boys are basically little men. It’s the same mentality that might explain why the book Childhood Disrupted was only able to include one man among its six interviewed adult subjects, there being such a small pool of ACE-traumatized men willing to formally tell his own story of childhood abuse. Could it be evidence of a continuing subtle societal take-it-like-a-man mindset? One in which so many men, even with anonymity, would prefer not to ‘complain’ to some stranger/author about his torturous childhood, as that is what ‘real men’ do? (I’ve tried more than once contacting the book’s author via internet websites in regards to this unaddressed elephant-in-the-room matter but received no reply.)

    The author of The Highly Sensitive Man (2019, Tom Falkenstein) writes in Chapter 1: ” … academics are telling us that ‘we know far less about the psychological and physical health of men than of women.’ Why is this? Michael Addis, a professor of psychology and a leading researcher into male identity and psychological health, has highlighted a deficit in our knowledge about men suffering from depression and argues that this has cultural, social, and historical roots.
    If we look at whether gender affects how people experience depression, how they express it, and how it’s treated, it quickly becomes clear that gender has for a long time referred to women and not to men. According to Addis, this is because, socially and historically, men have been seen as the dominant group and thus representative of normal psychological health. Women have thus been understood as the nondominant group, which deviated from the norm, and they have been examined and understood from this perspective. One of the countless problems of this approach is that the experiences and specific challenges of the ‘dominant group,’ in this case men, have remained hidden. …
    While it is true that a higher percentage of women than men will be diagnosed with an anxiety disorder or a depressive episode, the suicide rate among men is much higher. In the United States, the suicide rate is notably higher in men than in women. According to data from the Centers for Disease Control and Prevention, men account for 77 percent of the forty-five thousand people who kill themselves every year in the United States. In fact, men commit suicide more than women everywhere in the world. Men are more likely to suffer from addiction, and when men discuss depressive symptoms with their doctor, they are less likely than women to be diagnosed with depression and consequently don’t receive adequate therapeutic and pharmacological treatment.”

    • Just to be clear, all of the evidence suggests that Williams did receive what would be considered the top of the line in psychiatric/substance abuse treatment and therapy. This is not a case of someone “unwilling to seek treatment due to stigma.” This is a case of treatment failing him over and over again over many years.

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