Patrick Dylan's Blog, page 2

Our Sidewalk Psychotics

Why do we ignore the troubled souls scattered across our streets, muttering to themselves in fear?

Almost 60 years ago, President Kennedy delivered his famous speech that advocated for community-based care for the mentally ill. “Reliance on the cold mercy of custodial isolation will be supplanted by the open warmth of community concern and capability,” he promised. But when you walk by a sidewalk psychotic, do you sense the warmth of community concern?

“And a madman looking for a fight." -- Van Morrison

When President Kennedy made that speech, it had been proven that two-thirds of those suffering schizophrenia could be effectively treated and released within six months. However, at the time, the average stay in a federal sanatorium for someone with schizophrenia was 11 years. I find that so hard to believe that I’m going to restate it—people who could recover in six months were being locked up for 11 years!

Basically, it was a system in which the government built large, under-staffed, impersonal institutions and imprisoned those with mental illness, hiding the pain and responsibility of their diseases from the community. Sounds awful, right? But are we doing any better today?

President Kennedy believed that moving from old, bleak and failed federal asylums to newer, better-staffed community health centers would be the answer. And he was partially right. I’ll be forever indebted to our local crisis center and its team of psychiatrists and nurses who supported our family through our struggle. But too many people continue to fall through the cracks.

“There must have been a door there in the wall when I came in..." -- Pink Floyd

And when they fall, where do many end up? In large, under-staffed, impersonal institutions—except that we now call them prisons. The L.A. county jail system, essentially the largest mental health facility in the U.S., holds over 5,000 inmates suffering some form of brain illness. Rykers Island, outside of New York City, confines over 4,000. Indeed, the Treatment Advocacy Center has estimated that over 383,200 inmates across the country suffer from mental illness.

I’ve never stepped foot in a prison, but I have spent countless hours with someone suffering psychosis, someone whose brain wasn’t functioning correctly. The paranoia meant that she saw threats everywhere, even in the most innocuous settings. The idea of locking someone like her into a small cell in such a threatening environment, surrounded by strangers and without any support? Unfathomable. A complete miscarriage of justice. And yet the government does this as a normal course of business.

But maybe those who end up in prison are the lucky ones. At least, they have some chance at recovery, no matter how small and how many nightmares accompany their experience. The others fall to our streets, lacking not only medical care but shelter, food and clothing. These are the ones we see muttering to themselves on the corners of our downtown intersections.

“Freezing, rests his head on a pillow made of concrete again." -- Pearl Jam

Having witnessed the remarkable recovery from psychosis that can be achieved with patience, care and treatment, the fact that we leave these sidewalk psychotics to suffer alone is inexcusable. Are we, as a society, so frightened of brain malfunction that we cannot find the compassion to lend support to our most sick? Have we seen too many horror movies?

Although some psychosis can turn dangerous, most of those suffering on the streets remain only confused and afraid. Each one of these people had a mother, most had families, but now they huddle in misery, alone and scared, the warmth of community nowhere to be found. But if we could overcome the stigma—if we could see them as victims of disease and not as something to be feared and ignored—they would have a good chance at recovery.

We wouldn’t turn on our backs on those with severe heart disease or cancer. Brain illness should be no different. As author Danielle Steele argues in her memoir, A Gift of Hope: Helping the Homeless:

“Too often, homelessness is due to a disordered mind."

That's Entertainment

References to brain illness permeate our society, and not in a good way.

I’ve written before about the shameful ways that psychosis has been captured in movies, but it’s so much more than that. After you’ve watched a loved one struggle through a serious mental health crisis, you can’t help but notice these allusions everywhere.

“Let's go crazy. Let's get nuts." -- Prince

Of course, it starts within our language itself. So many common idioms refer to brain malfunction that capturing them all would be difficult. You’re driving me crazy. The traffic is insane out there. That guy’s a total psycho. These phrases are ingrained into our everyday language at an early age, and we use them so frequently that they’ve become automatic. Trust me, live with someone suffering psychosis, and you’ll quickly realize that every single word must be carefully monitored.

Given this, it shouldn’t be surprising that these phrases make their way into our music. Again, so many song lyrics refer flippantly to brain illness that we’d be here for days trying to collect them all. I need a lover that won’t drive me crazy. I’m going off the rails on the crazy train. She drives me crazy, and I can’t help myself. Those are the first three that come to mind, and that’s only for the word crazy. We hear these kinds of lyrics nonstop, across every genre of music. We sing along, not even thinking about the message. Live with someone suffering psychosis, however, and you learn to keep the stereo off.

We find this in other forms of entertainment as well, whether it be movies or television or radio. For example, I listen to a lot of podcasts, and I happen to love Conan O’Brien Needs a Friend. I find Conan hilarious, and he also seems smart, compassionate, and kind. But when he starts making fun of himself, saying that he didn’t take “his meds” that day or that he has “suffered a brain aneurism and lost his mind”—I have to turn it off. I can’t laugh like I used to, not after watching a loved one suffer through the horrible realities of acute psychosis.

“But that joke isn't funny anymore. It's too close to home, and it's too near the bone." -- The Smiths

I’m not trying to be a “snowflake” or ruin someone else’s good time, but collectively we should acknowledge that these references strengthen an already ingrained cultural stigma. If we made even a small attempt at doing better, it would go a long way in helping to correct such blatant discrimination. Unfortunately, we face literally centuries of societal prejudice that must be overcome. Look back over the past few decades and this becomes painfully clear.

For example, last night I watched the Batman movie from 1989—you know, the one with Jack Nicholson and Michael Keaton? I hadn’t seen it in twenty years, but I remembered loving it as a kid. Now, with more experienced eyes, I found it cringeworthy. Of course, the Joker’s character is labelled a psychotic, out of his mind and unpredictable. This trope makes him an obvious threat to society.

But it’s not just movies. During the pandemic, my son and I watched every episode of Seinfeld, which I hadn’t seen since the 1990’s. In several of them, Jerry and his gang refer to “Crazy Joe Davola” in derogatory ways. I remembered chuckling 25 years ago, surrounded by my college friends, but I couldn’t laugh anymore. Instead, I found myself worrying about Joe, wondering if someone close to him could help him find appropriate treatment.

“It's time for us as a people to start making some changes." -- Tupac

In many ways, the fight against the mental health stigma is similar to other important movements in our culture today, like Black Lives Matter and MeToo. Some people take offense at these, assuming that they are targeting all white people or all men. Being a white man, I don’t feel this way at all. It’s more like an acknowledgement that our society has been wrong for a very long time; and instead of continuing to let destructive injustices go unheeded, we should strive to eliminate them. Seriously, is it that difficult to admit that racism and sexism exist and that we need to do better? Of course not. The same can be said for ending the stigma surrounding mental illness.

I’ve addressed before the power of celebrity taking a stand for mental health, and it’s an important start. But the deeply ingrained stuff—the songs, the movies, and the shows—these things will take time and conscious effort to correct. So, let’s start now. And remember what President Obama said about change:

“Change will not come if we wait for some other person, or if we wait for some other time. We are the ones we've been waiting for. We are the change that we seek."

No Van Gogh?

Should advances in science be used to eliminate psychiatric disorders in the future?

I recently read Walter Isaacson’s book The Code Breaker about the fascinating innovations in genetic engineering over the past two decades. I’d encourage you to read it. Here’s a quick summary: Through their study of bacterial DNA, scientists have discovered how to directly edit the genetic makeup of cells, including human cells.

“She blinded me with science!" -- Thomas Dolby

What this means is that future parents will have the ability to decide the exact DNA of their offspring—not influence the genetic structure, not choose among the most promising embryos—but actually determine and control the DNA of their children and all future descendants. Making these types of inheritable genetic modifications is referred to as “germline editing.”

This holds incredible potential, both for good and bad. It brings up all kinds of ethical questions about societal fairness and the human species overall. Should wealthy parents be allowed to provide their kids with more intelligence? Should they be allowed to dial up the muscle mass, bone strength, and stamina of their children? Should we as a society allow the creation of individuals with superhuman abilities, like being able to see different wavelengths or hear extreme frequencies?

To be clear, this isn’t wishful thinking. The first humans with germline edits were twin babies born in China in 2018. Their particular enhancement was the genetic predisposition to avoid infection from the HIV virus. This doesn’t seem quite so problematic, at least to me, although at the time it caused incredible controversy. The scientific community felt that the safety of the approach hadn’t yet been fully tested, and the individual responsible received a multi-year prison sentence in China.

“You can do magic." -- America

Isaacson brings up other applications which not only seem appropriate but downright criminal if not utilized, at least once the safety hurdles have been cleared. He gives the example of Huntington’s Disease, a hereditary illness that strikes in middle age and results in the extraordinarily painful, progressive death of its sufferers. Apparently, the genetic fix is fairly straightforward, and it would effectively eliminate the disease from the human race. For something like this, that is completely preventable, how could we not take advantage of this new technology?

He then addresses psychiatric illnesses, the ones I tend to discuss a lot in this blog: bipolar disorder, schizophrenia, anxiety, and depression. Clearly, much research has yet to be done on these, but we do know that genetics plays a major role. If you suffer from one of these, and you could treat your child’s DNA to eliminate all chance of him or her inheriting your affliction, would you do it? Given what our family has been through, I’m fairly certain my wife and I would.

But then Isaacson offers a different perspective. So many of history’s most creative individuals have suffered from brain illness: Vincent Van Gogh, Franz Schubert, Edgar Allen Poe, Ernest Hemingway, Sylvia Plath, John Nash, Kurt Vonnegut, Francis Ford Coppola, Mariah Carey, Lady Gaga. The list goes on and on. Years ago, Nancy Andreasen, an expert on creativity, conducted a study of thirty prominent contemporary authors. 80% had suffered from major depression or mood disorder, and 40% lived with bipolar. It may not be 100% related, but an association between creativity and brain illness certainly exists. So, this sets up a harder question: If you suffer from one of these illnesses, and you knew that your child would become the next Lady Gaga, would you still change her DNA?

“God is a concept by which we measure our pain." -- John Lennon

Although I acknowledge Isaacson’s point, it’s hard to imagine not preventing serious mental illness. In his book, he also interviews self-proclaimed bio-hacker Josiah Zayner, who suffers from bipolar disorder. “It’s terrible. It inflicts serious issues on my life. I would love to get rid of it…how can I want my child to just grow up and suffer like I have?” Zayner makes a strong case for using germline editing to rid the human race of bipolar once and for all.

In the end, determining who gets to play God is a difficult task. If we were to eradicate all psychiatric illness, would it be detrimental to society overall? Maybe, but then how should we decide who has to suffer? These questions have kept me thinking about an exchange recounted in Sylvia Nasar’s novel about John Nash, A Beautiful Mind:

“How could you, a mathematician devoted to reason and logical proof...believe that extraterrestrials are sending you messages?" a visitor asked, according to Nasar.

"Because the ideas I had about supernatural beings came to me the same way my mathematical ideas did," Nash reportedly replied. "So, I took them seriously ."

Not Just Our Story

The stigma drags everyone along, even when you want to share your story openly.

On a recent episode of One Mind’s Brain Waves show, Brandon Staglin asked why I used a pseudonym when publishing my book. Unexpectedly overcome with emotion, I started tearing up during my answer. Fortunately, I managed to hold it together to finish the interview.

But I’ve been thinking about it ever since. I’ve answered that inquiry dozens of times, why did I suddenly lose my composure with Brandon?

“Breakdown, go ahead and give it to me." -- Tom Petty & the Heartbreakers

For context, my wife and I decided to publish our story under a pen name so that we could preserve the privacy of extended family members who felt uncomfortable about the truth coming out. The stigma can have real repercussions on people’s lives; even if someone hasn’t suffered a mental illness themselves, the fact that it has emerged within their family can lead to prejudice.

I really struggled with the decision. It felt disingenuous to me—writing a book advocating for an open discussion about mental illness and then hiding behind a pseudonym. In fact, at one point, I told my wife I didn’t want to move forward. “But Pat,” she argued, “if we can help even one person, does it matter that they won’t know our real identities?” She won me over in the end.

But I still feel uncomfortable about it, especially when interacting with those who have shared the whole of their stories with courage and conviction. I have so much admiration for these people. Brandon is not only an example, but he’s one of the most prominent. After everything our family has experienced, I have a good idea of what he has accomplished in his life. For someone to have gone through the hell of serious mental illness and come out the other side not only surviving but thriving is nothing short of incredible.

“Sometimes you gotta get scars to get what you deserve." -- Andy Grammer

When a family member is going through that nightmare, it’s easy to feel hopeless. Nothing seems to help; the love you so desperately give becomes lost in a haze of psychosis. You find yourself focusing on the dream of recovery. You cling to it, fearing that a loss of faith could quickly slide into a lack of strength. But, deep down, the doubt creeps in. You keep stamping it out, only to feel it wriggle back. This becomes a constant battle, trying to maintain hope while battling that ever-rising despair.

That was why Brandon’s question had such an impact on me. Given his own story, our family’s victory came into sharper focus. I became overwhelmed with thoughts of my wife, about how she accepted and overcame her condition. I revisited my own mental health journey and those of our children. The fact that we remain married, and in love, and that we enjoy such a close relationship with each other and our kids—these are remarkable achievements. And I’d love nothing more than to shout about them to the rest of the world.

“I think I made it perfectly; I wouldn't change a thing." -- John Denver

But I can’t--because it’s not just our story.

Our extended family members read my manuscript before it was published. It was hard for them; some wanted to bury the past and not think about it. Others, as I noted, were concerned with how the stigma might affect them. Also, I’m pretty sure several couldn’t figure out why we even wanted to talk about it, let alone publish a book. Wasn’t it enough that we had survived?

In the end, we came to the pseudonym compromise. It’s not ideal for me personally, but it works for the family. More importantly, it works for anyone who might read our story and find it helpful. For some, it might give them insight into how to manage their own brain illness, and that’s worth everything. For others, it might provide a family with strength to keep the threat of total despair at bay. But if you want real inspiration, just look to Brandon and the Staglin family:

“And in the end, I'm happy that I was diagnosed with schizophrenia, that I developed schizophrenia, because it's given me a purpose that is very valuable to me in my heart, in my mind...just a long, long journey, and it has really turned tragedy into triumph."

Don't Fight

Treat brain illness like any other disease--accept it, seek help and adapt.

I was diagnosed with Crohn’s disease when I was 24. “You have to learn to live with the pain,” a doctor told me. “You have a chronic illness. It’s never going away.”

But I couldn’t believe it. How could I be sick for the rest of my life? It couldn’t be right; it didn’t seem fair. I lay in bed that night, rejecting my fate. The denial wasn’t helping my situation. My intestines didn’t care how much I refused to accept their demise; they remained inflamed and damaged.

“Can I have some remedy?" -- The Black Crowes

I don’t suffer the debilitating symptoms of Crohn’s disease any longer, and I haven’t for more than two decades. But I still consider myself someone with the illness. It governs how I live and approach the world. It's a big part of my identity, and it always will be. Once I accepted this, I learned how to adapt. I figured out how to live as normally as possible given the unfortunate truth of my situation.

For over 25 years, my diet has been extremely limited. I went gluten and sugar free way before it was cool. I haven’t had any processed food for ages—sweets, soda, pizza. I haven’t enjoyed a slice of bread or a bowl of pasta since 1995. I used to miss these things but don’t anymore. I know that by following a careful diet, I keep myself from the agonizing effects of my disease.

Although devastating at the time, my diagnosis was a lucky one. Crohn’s disease can change your life, but it doesn’t carry a stigma. Rather than treat me with prejudice or contempt when hearing about my sickness, people showed support and compassion. I never felt shamed by those around me. I never felt weak or inferior or that the illness was somehow my fault.

“It ain't me, babe." -- Bob Dylan

The same cannot be said of mental illness. Unfortunately, when a sickness affects your brain, society treats you differently. But it’s worse than that. We treat ourselves differently, too. This is perhaps the most devastating part of the stigma.

Brain illness influences our self-identity in ways both blatant and insidious. The stigma is built into our laws. You are assumed to be unstable, dangerous or inferior. You can’t be elected to office; you can’t hold certain jobs. But it also manifests itself in hushed conversations and rolled eyes. It sneaks into our language, infiltrating common phrases. Like the poison of racism, it divides us into separate groups. You can’t be in one if you’re in the other.

We have lived with these biases for so long that we believe them ourselves. Rather than suffer prejudice, we deny our sickness. Like my younger self dismissing Crohn’s disease, we refuse to accept the reality of our situation. And it locks us into an even harder struggle. With Crohn’s disease, my resistance lasted months; with PTSD, it persisted for years. Again, I was fortunate. Many times, a brain illness can be far more destructive, and waiting years is not an option.

“It's been so long, so long..." -- Fountains of Wayne

And that’s the real tragedy—these illnesses must be addressed early. We can’t quickly change society’s approach to brain health, but we can change our own. If you accept a mental illness, whatever it might be, you can take the necessary steps to resolve it or adapt appropriately. You can reach out for help, see a therapist or reduce stress. You can meet with a psychiatrist and find the correct medication to adjust the chemical balance in your brain. Most importantly, you can move from being a victim to becoming a survivor.

I wiped away my own mental health prejudice years ago. It allowed me to see my PTSD for what it was—a brain disorder that was standing in the way of my happiness. Acceptance is not surrender, not for any “normal” disease and not for one of the brain. I often think of Michael J. Fox and his relationship with Parkinson’s disease. We all could learn a lot from how he approaches it:

“I often say now I don't have any choice whether or not I have Parkinson's, but surrounding that non-choice are a million other choices that I can make."

Open Up

Share your mental health struggles early and often; compassion and support will follow.

I watched the new movie Encanto recently. Like all great Disney stories, this film carried several important messages. One was the need to share our internal struggles with those that we love. It really struck a chord.

“Pressure that'll tip, tip, tip 'til you just go pop." -- Jessica Darrow, Encanto

I’ve written about this before, and I’ll do it again. We’ll all be touched by mental illness at some point in our lives. It’s far too common to avoid. More than 20% of us will suffer a mental health challenge—and, on average, each of us has 8-10 very close friends. Do the math. If you don’t think this applies to you, it’s only because your friends aren’t comfortable being honest.

In fact, either you or someone you know is struggling right now, as you read this sentence.

From experience, let me assure you that the most effective way of addressing mental illness is to be honest about it, especially with those close to you. But this isn’t our first instinct. On the contrary, it takes tremendous courage to share with others our private battles. We feel weak, embarrassed, and inadequate. The stigma lurks around every corner; the fear of being "found out" governs our every action.

If you aren't the one suffering, it's imperative that your friends feel comfortable opening up to you. For that reason, you should talk freely and approvingly about mental health treatments, even if you don't think you need them. Someone you love might be in dire need of help. If they see you as a safe harbor, they'll be more apt to solicit your support. And that's when the real healing can begin. But they probably won't risk it if they have any inkling that ridicule or rejection might follow.

“What if I'm someone you won't talk about?" -- Harry Styles

When my wife was sick, I desperately tried to keep her illness a secret. I was scared her reputation might be damaged. The disease might affect how people viewed her; it might cause her to lose her job. When I became sick myself, I desperately tried to ignore it. I naively believed my issues would just go away with time, that my brain could somehow heal itself.

Without question, the stigma has power. Employers do discriminate. Others do treat us differently. We fool ourselves into thinking that we can handle it on our own. These are the inevitable burdens of mental illness. And until we recognize and address them, they will remain roadblocks on our path to recovery.

Sharing comes with a cost, and it’s a scary price to pay, but the benefits are so worthwhile. Once you open up, compassion comes flooding in. So many others have dealt with similar issues and are quick to offer their support and understanding. You realize that you are not alone, a powerful discovery given that most mental illnesses carry with them a profound feeling of solitude.

“I didn't know I was lonely 'til I saw your face." -- The Bleachers

Additionally, just talking about your challenges can help. When I was diagnosed with PTSD, I found tremendous relief in recounting the stressful memories that were haunting me. Most importantly, you can find the best treatment for your situation, whether that be therapy, medication, or some other effective protocol.

When my family finally opened up about our experiences, I was astounded by the support. I wasted so much time and energy, not to mention stress, in trying to keep our experience a secret. And all it did was prolong the empathy that poured in from our extended community. If I could go back, this is the one thing that I would change: I would be honest from the start.

Don’t make this same mistake. Don’t hide your problems away in fear. If you're reading this and you feel anxious, depressed, lonely and isolated, or disconnected from reality, it's time to open up. And if you're reading this and no one close to you has ever shared a mental health struggle--well, then you need to make yourself more approachable. As Lady Gaga so perfectly put it in her Grammy acceptance speech a few years ago:

“So, if you see somebody that's hurting, don't look away. And if you're hurting, even though it might be hard, try to find that bravery within yourself to dive deep and go tell somebody."

What is Your Emergency?

If you've ever called 911, you know the question. It's the first thing they ask.

I had to call 911 once; it happened about ten years ago. If you’ve read my book, you already know the story. My wife was suffering acute psychosis, wouldn’t take her medication, and had become belligerent. Our psychiatrist had drilled it into me--if things came to this, I had to call for immediate help.

Panicked by the stress of the situation, I didn't have much time to think. I grabbed my phone and dialed.

“Help! I need somebody. Help! Not just anybody." -- The Beatles

Once you call those three digits and provide your address, there’s no turning back. Within minutes, you hear the sirens approaching and, in almost no time, the first responders are pounding at your door. The loud alarms and flashing red lights are jarring. In an already stressful situation, they catapult the tension into overdrive.

Imagine the impact on my wife. She was already suffering brain dysfunction and severe paranoia. It was made even worse by the protocols in place for a “domestic disturbance.” A fireman quickly separated us physically; even if I could have comforted her, they wouldn’t let me near. Suddenly, my poor spouse was escorted to our front porch, where the blare of the fire engine was deafening. Several cops surrounded her.

At this point, things really deteriorated. After deducing that, indeed, my wife was suffering thought disorder, the police proceeded to handcuff her. They led her, hands locked tightly behind her back, to the waiting squad car. I knew they would take her to the local treatment center, but I didn’t realize they would do it so forcefully. Not only was the woman I loved very sick, but now she was handcuffed, terrified, and alone. I watched through the window, tears streaming down my face.

“And the tears come streaming down your face." -- Coldplay

I have never begrudged the first responders for their actions. On the contrary, I cried for help, and they materialized with incredible responsiveness. But I hadn’t thought through the actual ramifications of my 911 call. I never suspected that my mentally ill wife would be treated—almost—like a dangerous criminal. The police handled her as gently as possible, but that was only because she was submissive. I hate to imagine what could have transpired otherwise.

People suffering mental illness are difficult to be around, especially those with psychosis. They're unpredictable and, if you aren't accustomed to it, eerily frightening. They certainly can't be expected to follow orders. Police, firefighters, and EMS personal can’t be trained in all manner of crisis situations and also be required to handle severe mental health emergencies. It’s asking way too much of them. And that’s why a new nationwide number will be rolling out this summer: 988.

988 will be the number to dial in a mental health crisis. The call first will be routed to a counselor trained in suicide prevention. If that person believes dispatch is required, a mobile crisis team will be sent. These first responders will specialize in dealing with people whose brains aren’t functioning properly, and they won’t be so quick with the handcuffs. It will be an incredible improvement; I only wish it were in place a decade ago.

“And if you call, I will answer." -- Barenaked Ladies

States need to implement the new number by this coming summer. It was created through a bipartisan bill signed into law in the fall of 2020—yes, you heard that correctly, a bipartisan bill. In a country so divided, Americans all agree on the need for a better approach to mental health. In fact, the National Alliance for Mental Illness recently released the results of a poll it conducted on the new 988 initiative. The results were overwhelming:

90% support the creation of mental health, drug/alcohol, and suicide crisis call centers 84% support funding for a 911-like nationwide number for mental health crisis response 73% would be willing to contribute to funding a nationwide number with a $1/month charge on their phone bill (similar to current 911 funding)

By changing our approach, we’ll not only improve outcomes, but we’ll also save lives. Understandably, encounters between police and the mentally ill are fraught with tragedy. According to the Washington Post, over 20% of all fatal police shootings in 2019 involved someone with a mental illness. As President Biden said on the campaign trail:

“That's why we have to provide, within police departments, psychologists and social workers to go out with the cops on some of those 911 calls, to de-escalate..."

Making a Difference

Every little bit helps in the fight to end the stigma

I was listening to a Smartless podcast recently. The hosts were interviewing David Remnick, the longtime editor of the New Yorker, and discussing the world’s challenges: the pandemic, threats to democracy, etc. One of them griped, “I can’t do anything about any of it.”

It struck a chord because I frequently feel that way about the stigma surrounding mental illness—what can I really do?

“Do I understand your question, man, are you hopeless and forlorn?" -- Bob Dylan

But Remnick responded immediately in disagreement. “Each person can play some kind of role,” he said. Even if you feel helpless, he argued, like the challenge is insurmountable, every little act can chip away at the problem. He was talking about climate change, but his reasoning could apply just as easily to brain illness.

The next day a friend contacted me, someone who had just finished reading my book. She thanked me for writing it and told me how valuable she had found our story. Her teenager was struggling with anxiety issues, and she was trying to better understand how to support her daughter. I remembered the podcast and realized Remnick was right; I had made a difference, in my own way.

But later that week, I was reminded that some people do much more. I was scanning the Harvard student-run paper, and I came across this article. A nonprofit called Active Minds had scattered one thousand backpacks across the lawn in Harvard Yard. Each backpack was donated by the family of a college student who had died of suicide. The packs were symbolic—about a thousand college students die of suicide every year.

If you’ve never been to Harvard Yard, I can assure you that this would have been a powerful display. A bustling campus, you would have seen spirited students moving about, mingling together, and studying on the grass. But backpacks were lying everywhere, many with pictures and notes attached. The juxtaposition of such sobering reminders of loss scattered amongst the promise of energetic youth would have been startling.

“Sending big waves into motion..." -- Rachel Platten

Researching Active Minds, I learned that the organization was started about twenty years ago by a student from UPenn. She lost her brother to suicide, and she set out to make a change. If not for the stigma, her brother might have reached out for help. And with support and the appropriate treatment, his death could have been prevented. Alison Malmon knew this, and she did something about it.

Today, Active Minds leads a network of over 500 chapters focused on battling the stigma, preventing teen suicide, and raising awareness about mental health education. One of the group’s main messages is that seeking help is a show of strength rather than weakness. Active Minds runs backpack displays like the one at Harvard. It also sponsors campus speakers, local workshops, and several other schoolwide programs. It does all of this because of one person—what an incredible legacy.

Then I attended the annual Kennedy Forum’s Annual Meeting on mental health. Although held virtually, the conference brought together dozens of individuals and organizations focused on changing the dialogue surrounding brain health. They were all doing their part to end the stigma. But the one who had the greatest impact was Patrick Kennedy, the person behind the conference and the founder of the Kennedy Forum.

“I'm not afraid to take a stand. Everybody come take my hand." -- Eminem

Several influential families are also using their resources in this crusade. The Close family, led by sisters Jessie and Glenn, backs a powerful anti-stigma media campaign through its nonprofit, BringChange2Mind. The Staglin family is funding cutting edge research into brain illness with its organization, One Mind. And Lada Gaga and her mother, Cynthia Germanotta, are supporting youth emotional health through their Born This Way Foundation.

We can’t all be Alison Malman, Patrick Kennedy, or a member of one of these prominent families, but we can play our own roles, no matter how small. We can all do our part to shine a light on the fact that mental illness should be treated like any other illness. If you missed what Glenn Close said over ten years ago, it's worth revisiting:

“What mental health needs is more sunlight, more candor, more unashamed conversation about illnesses that affect not only individuals, but their families as well."

Gut Feeling

How your microbiome affects your brain health

Have you heard of Long Covid? I’ve been dealing with it now for over a year and a half. Essentially, my body doesn’t work right anymore. I suffer chronic headaches and a persistent sore throat, and if my heart rate goes above 120 bpm, I feel like I have the flu for several days. It isn't much fun.

Lots of theories abound as to what causes Long Covid, but I’m convinced it’s an autoimmune disorder. In other words, my immune system was reprogrammed by the virus, and now it isn’t functioning properly. It continues to attack my body even though the virus has probably been cleared by now. But curing an autoimmune disease, which I believe to be possible, requires considerable time, trial-and-error, and luck.

“No medication to procure makes me pure." -- Barenaked Ladies

It’s eerily similar to the Crohn’s disease I was diagnosed with 25 years ago. At that time, I wasn’t dealing with my current symptoms; instead, I was suffering chronic and excruciating abdominal pain. That pain started about two months after recovering from a month-long battle with the Epstein-Barr virus. I used to think that strong antibiotics caused my gastrointestinal trouble. Now, I’m wondering if it might have been caused by the virus itself.

After several years, I cured my Crohn’s with a nutritional approach, cutting all gluten, sucrose, and lactose from my diet. I’ve been following that regimen for over 25 years now. The theory was that my microbiome—all of the bacteria lining my digestive system—was out-of-whack. By eliminating certain foods, I could encourage specific beneficial bacteria to thrive while killing off the bad bugs. It worked, and after a few years I was pain-free again.

Then Covid came along. My first symptoms of this new virus were definitely gut-related, and the labored breathing didn’t start for a week. Even then, I only had one rough night where my blood oxygen levels fell below 95. But I never recovered, and the past eighteen months have been, as I mentioned earlier, not so great.

“Hello darkness, my old friend." -- S imon and Garfunkle

For about a year, I’ve been approaching Long Covid in the same way as Crohn’s—by focusing on the microbiome. Early on, I went on an elemental diet, hoping to do a quick intestinal reset. An elemental diet is one where you don’t eat any solid food for three weeks. Instead, you drink a formula of essential proteins, fats, and carbohydrates that digests quickly and easily in the small intestine. I then began following an even stricter diet, eliminating specific fruits and vegetables that were high in lectins, a type of plant-based poison that, in high doses, can cause certain types of autoimmune problems.

But I haven’t cracked it yet; I'm still suffering. I have spent much of my free time in the past year reading about various dietary approaches to addressing autoimmune conditions and shifting the microbiome. I never realized how much the body relies on the digestive system. Over 70% of neurotransmitters are actually produced by the gut, and most of the immune system is regulated by chemicals created in it. I find this both amazing and scary, given that current science knows so little about the complicated interactions that occur within our digestive track.

“Oh, it's complicated!" -- Sing Street

All this research has me thinking a lot about mental health, and how our diets play such an important role in the healthy functioning of our brains. One need only search the term “gut-brain-axis” and countless articles and scientific studies emerge that link various types of bacteria to neurotransmitter levels and other mood or anxiety-related chemicals. One fascinating study links a specific soil-based bacterium to a reduction in stress levels and could be a future treatment for afflictions like PTSD.

Given my experience with severe mental illness, it's hard to believe that all brain diseases could be resolved through an altered microbiome. Still, it does seem that gut health could play a major role in overall mood, including things like depression and anxiety. I predict that in the future, microbiome maps will be as common as complete blood counts are today, and psychiatrists will use them as one more tool to help diagnose and effectively treat their patients.

Approaches like this are already being discussed by mental health researchers. “Psychobiotics,” or the idea that supplements could be produced with brain-friendly microbes similar to probiotics, is becoming a more accepted near-term reality. According to Professor Christopher Lowry from the University of Colorado Boulder:

“We have every reason to be optimistic that these psychobiotics are coming."

Hey, Dope!

,Your phone is ringing. It's dopamine calling.

Professor Anna Lembke recently published the book, Dopamine Nation, and the main points from it have been featured on NPR, The Wall Street Journal, and various other media outlets in recent days. You might have also seen her on the Netflix documentary The Social Dilemma.

One of her key arguments boils down to this: You are addicted to your smartphone. Well, not exactly your phone, but the apps on the phone that give you a pleasurable distraction from everyday life—the likes on your feed, the funny clips from TikTok, the number of people who viewed your photo.

“The beat is a chemical, beat is a chemical." -- Twenty One Pilots

Each of these small things releases dopamine to your brain, the chemical that stimulates the feeling of pleasure. Once you have a dopamine hit, you want another one, and you start to look forward to the next. Just the thought of checking Instagram releases dopamine as your body anticipates that next pleasurable feeling. That’s why so many of us spend too much time staring at our screens. Trying to stop is like trying to quit any addiction—difficult to the point of impossible.

Why quit? Dopamine isn’t bad; on the contrary, it’s one of our main neurotransmitters. Way too much dopamine can be a real problem, which our family learned the hard way. My wife’s dopamine levels skyrocketed over ten years ago for no apparent reason. She became abruptly psychotic, and it took us years to successfully manage her health. But should we worry about the small dopamine hits received from social media?

According to Professor Lembke, the answer is an overwhelming yes. Research has shown that the part of the brain that controls pleasure also controls pain, and our brains strive for balance. What that means is that if you are continually receiving hits of dopamine, your body will compensate by making you feel worse overall. You’ll be distressed, unhappy, and down. In other words, you’ll be depressed.

“I'm going down, down, down, down." -- B ruce Springsteen

It becomes a vicious cycle. The worse you feel, the more you’ll turn to your phone for that little feeling of joy. But the more dopamine you receive, the more your brain will seek balance. And in seeking that balance, your brain will cause you to become even more depressed. Many of us are already trapped, lying awake at night anticipating the next TikTok video. Just one more and then I’ll turn it off!

So how do we break the cycle? Professor Lembke advocates spending less time pursuing the easy enjoyment of social media and more time struggling with challenge. “Doing things that are hard is one of the best ways to pursue a life worth living, because the pleasure we get afterwards is more enduring,” she says. Go for a run. Lift some weights. Study something new. Although these might not seem fun in the moment, you’ll feel much better afterwards. Why? Remember that balance. Your brain will improve your overall mood as it fights to maintain equilibrium between the pain and the pleasure.

This shouldn’t be surprising. Decades of research have shown exercise to be one of the most effective antidepressant medications. A healthy diet full of whole foods leads to much higher levels of happiness than processed junk and sugar. Therefore, it seems intuitive that a life without constant Twitter feeds would result in feeling more consistently content. But it’s just so hard to achieve.

“Get up, get up, get out of the door." -- Grateful Dead

As a spouse and parent, I feel the need to always be reachable. Although Professor Lembke suggests starting by taking a day away from your smartphone, this strikes me as risky. What if my loved ones need me? But then I think back to the days before cell phones—I could still be reached, even without this device in my pocket. Maybe I should try turning the ringer on and putting my phone on the kitchen counter, where I could still hear it from every room?

Still, for some reason, the thought of not having it actually with me is unsettling. Am I already so hooked on its dopamine drip that I can’t contemplate going without? I’ll have to work my way into it. But I’m all for taking the steps to improve my brain health, and it’s hard to argue with Professor Lembke’s logic. Check back in a month or two for a progress update. Until then, remember what she says:

“They've been engineered to be addictive, and we don't really need more studies to show that that's true. All you need to do is go outside and look around."