The Sean Costello Memorial Fund Blog

Stigma and Sean

I try to write something in the times that I miss Sean the most. It’s hard to segment those times, as he is with me every day, every minute. Nonetheless, I would be remiss not to remember his birthday. On Tuesday, April 16, he would have been 33 years old. I’m pretty sure if he’d made it past that one night, he’d be here with us now laughing and playing his guitar. I saw a maturity in Sean those last weeks that I hadn’t seen before. He was determined. Determined to do better and have a “normal” life. That’s what I’ve been thinking a lot about lately…the normal life.

In the past month, I’ve had the opportunity to cross paths with someone who has been diagnosed with bipolar disorder; a Mom of someone who has been challenged by the disease; and, a young man whose Mom died as a consequence of it. In each of these encounters, one theme arose: stigma. There is a shame that comes with a diagnosis of anything that has to do with our mental health; though, things like depression and alcoholism have become ubiquitous and seemingly socially acceptable. Go to a club and see someone who is known to drink to excess and people will probably laugh at their behavior. Often, they become a really popular regular. Maybe they dance more, tell better jokes, or just laugh at ones that aren’t that funny, but they entertain us. We don’t see them in the morning when they’re hanging over the toilet, or missing work, or subjecting their family to the inevitable down that follows the drunk. There is more to it than meets the eye, but what meets the eye is somehow acceptable.

We all know someone who has periods of depression. Maybe it’s seasonally- related, maybe only holidays or anniversaries of loved ones’ passing are triggers. We forgive them their melancholy and try to cheer them with a phone call, a card or maybe just some time to bounce back. This is a degree of mental “unhealth” that we accept. Nonetheless, let it go to the extreme….let a person, in a moment of desperation or isolation, try to end the sadness and we shun them and their family. To avoid scrutiny and shame, they and their family keep their secret in the dark. If not, the stigma of suicide hangs over them for as long as there are people to remember. Unfortunately, because it is hidden, seldom are the connections made that could positively affect the life of another member of the family.

These degrees of unhealthy coping or mood disruptions are apparent in every category of what we call mental illness. With bipolar disorder, psychiatrists now speak of the bipolar spectrum. I might fit on that spectrum because I am creative, think out of the box, sometimes have more ideas than there are questions to answer, and I have a child who was bipolar. Do I act crazy?  (only to my husband and children J) I am productive, successful, dependable, and responsible. I am not mentally ill and yet, I apparently am not “normal.”  I don’t’ want to be “normal” if normal means that I can’t express my creative self, set my own path and be unique. Where does that line between creative, shy, anxious, depressed and “bipolar” lie….the one that causes self-doubt, isolation and misunderstanding?

Apparently, it appears when someone diagnoses you. The label is what becomes debilitating. Can you look at someone who is bipolar and tell that they are? Not unless their mood swings are overt and disruptive. Even then, they might just be “spoiled,” “ moody,” etc. until they are labeled. Then, the snowball begins to grow larger and larger. People who were friends with them yesterday look at them differently. They look at themselves differently. People wait for them to act out and display psychotic and/or violent behavior. The expectation can last a lifetime, and cause loss of jobs, health coverage and acceptance.

There are many problems with our culture’s application of stigma when someone’s problem affects the organ called the brain. There is automatically a judgment. Why don’t they just pull themselves out of it? Just be happy? This judgment results in guilt in the person with challenges related to brain chemistry. If a person is overweight and diabetic, we are empathetic about their disease. Obesity and diabetes are in epidemic proportions. The result? More research and more grants. TV shows dedicated to the “biggest loser” with people cheering for their improvement. What about lung cancer and smoking? If someone has a diagnosis of lung cancer, and they are a known smoker, people are still very understanding. There doesn’t seem to be blame or shame.

Now let’s take a disorder which the person has no control over…. the biochemistry of the brain (before the problem is diagnosed and adequately treated). MRIs can show the difference in the brain of people with bipolar disorder. Genetic testing has proven there is a genetic link in many cases. Post -traumatic stress can trigger bipolar disease. What is the result of this knowledge? Insurance plans have limited mental health coverage. You can be a noncompliant diabetic and be hospitalized over and over again. If you’re lucky enough to have mental health insurance coverage, there are strict limits to treatment and needed medications are almost cost prohibitive.

Why is there such a difference between “medical” and “mental”? I’m not sure. Maybe because we are just now learning about the brain. Maybe because culturally, mental illness was associated with evil spirits or the devil. Maybe because we are afraid that we’ll become “crazy” like our whomever.  We hide our symptoms in lonely isolation, or mask them with substances, avoid a diagnosis and deny one when it’s made. Fear. It has to be fear: nothing else makes sense. The consequences of being disabled by this fear can be life altering.

Bipolar disorder is the 7^th largest cause of disability in the world. Mental illness causes more disability than all cardiac and cancer diagnoses combined; yet, funding for research can’t even compare to diseased of lesser incidence. It isn’t because of cost or numbers of people with the disease. It might be because not enough people are fighting for effective treatment and/or a cure. How can you fight for something that you can’t admit exists?

Let’s look at the opposite side of this thing called bipolar “disorder.”  Some of the brightest and most accomplished artists, leaders, and musicians are considered to be/have been bipolar. Thank about that. Where would the world be without poetry, music and the leadership of men like Winston Churchill and Abraham Lincoln?  Were they different? Yes, and thank God they were. Were they normal? If that means that they thought the same way as everyone else, thank God they weren’t.

Stigma is a deadly thing. When we fear something, we run away. We don’t fight. We don’t confront it. We don’t find a way to conquer it. I’ve been told that Georgia is closing one of only 3 facilities in the state that treat child mental illness, determining that mental illness in children is not a problem. If child includes adolescents, how do they explain the rate of suicide in that population, or the known onset of bipolar disorder? Would they close a center for treatment of childhood cancer? The outcry would be deafening.

Sean was neither crazy nor was he normal. You couldn’t look at him and say, “Poor Sean, he’s bipolar.” He, though, was confused and scared by the diagnosis. What did it mean? What would people think? I didn’t know enough to answer some of his questions. I can tell you that the professionals that took care of him didn’t know the answers either.

So, what does all this mean?  It means that wonderful, creative, functioning people are being told that they are different, but in a way that isn’t socially acceptable. It means that people don’t talk about it and researchers don’t get paid to figure out how to treat it effectively. Bipolar disorder didn’t kill Sean. Incorrect diagnoses, inadequate information and inappropriate treatment did, and unfortunately, he’s not alone.

If there is one thing that I would say, it would be to look at Sean’s face….listen to his music, and then ask yourself: “did he deserve better?” Wouldn’t we have loved to hear more? He is only one of too many. The one that I’ve been willing to “out.”  If it’s your child, your friend, your spouse, you feel exactly the same.

I don’t know the answers to the problems of the world. I do know that one answer to this problem lies in research and research costs money. In this economy, the usual funding sources are drying up. It will be individuals who make the difference. If all you can spare is one Starbucks a week, they all add up to a movement toward hope. Someone dear to Sean skipped a bus a day during Lent and donated the money. Two for one….honoring Sean and building muscle!

As Sean’s mom, if losing him doesn’t effect some good in his name, then I would feel hopeless. Hopelessness is a self-fulfilling prophecy, as is a negative self-image. Sometimes, a diagnosis of a mental disorder results in both. I’m just too creative and stubborn to give up!  There must be a way.

On the 14^th, we celebrated Sean and demonstrated how much he is missed. In a world of possibilities, I could never have imagined having such a brilliant, wonderful child as my own. He was truly a light. Was he a unique and challenging light? For sure. But only those who challenge produce change. I’m so glad I’m not normal; otherwise, I couldn’t have had a child as phenomenal as Sean.

Thank you for sharing in Sean’s birthday. He loved when people came to hear his music, so thank you for giving him the one present he would cherish. Here’s hoping that his legacy will bring light and hope to other brilliant people like him. Shine a light on mental illness. Recognize it. Talk about it. Understand it. Accept it. When possible, embrace it.

As Always,

Sean’s Mom

From The Heart

There is so much we have accomplished and still so much to do. The longer I am involved with the Fund, the more I realize the significance of its mission. Too little is known about the treatment of bipolar disorder and even less about the care and support of the creative artist who has very unique challenges.

Let’s take one of the greatest triggers for a manic (therefore, dangerous) episode: sleep disruption.  What musician has a regular sleep schedule? The fact of the matter is that touring and playing at all hours is one of the most difficult and common facets of a musician’s life. Unfortunately, it is also very dangerous if you are bipolar (or suspect that you may be). There is significant evidence that Sean only wanted to sleep the night he died. The problem is that neither he, nor I, knew the dangers of sleep deprivation, only how difficult it often was for him to sleep. The MOJO project is something that we have been trying to get funding for, now for over 2 years. The beauty of the program is that it would be online, with 24/7 access…when musicians are up and having trouble sleeping. It would include education about the trigger as well as the ability to track  sleep with a mechanism for warning someone is getting into the danger zone. It would be free, confidential, accessible and tailored to a musician. You cannot know how much I would love to see this get off the ground. There is nothing like it and the impact could be life saving. ( Another grant proposal is being completed this weekend…wish us luck!)

One of the most common co-morbidities of BD is substance abuse.* About 70% of people who are bipolar self-medicate. Awareness of the trigger of working in places where alcohol is not only available, but often free to performing musicians needs to be part of an effective treatment plan. (The fact that musicians are also offered other illicit drugs from fans and “friends” does help the need for mood stabilization).  Medications that don’t make one feel like they are unable to be creative; effective, non-addictive drugs for anxiety, etc. are all things that need to be researched.

About 2.6% of the population in the US over 18 suffers with bipolar disorder, and creative people are about 8 times more likely to be counted in that number. To say that there is little in evidence based care for our target population is an understatement. The number of people who are dying (Sean among them) because of delayed diagnosis and inadequate care is unacceptable and tragic.

We fight, as a group and an organization, against the stigma of mental illness, but also the widely held opinion that musicians are proud to be high. Sean wasn’t. He wanted to have a stable, normal life with a wife and kids. That meant help from professionals that knew how to guide him there. He never found that. Research monies for the challenges of bipolar disorder are desperately needed and woefully lacking.  We can affect that in two ways (1) action via volunteering, campaigning, lobbying, just simply talking; and (2) actively participating in raising or donating the funds that the government is less and less willing/able to allocate.

When you look around a club, know that of 100 people in the room, statistically, 3 of them will be bipolar. This is the most serious of psychiatric disorders, with a 50% higher successful suicide rate than any other. How many of our friends have we already lost in just our small community?

According to the National Institute of Mental Health, mental illness causes more disability than cardiovascular disease and all cancers; yet, we know of Susan G Koman Foundation and pink ribbons. How many people know of The Sean Costello Memorial Fund for Bipolar Research? It takes a groundswell of support and passion.

I have to say that my journey with the Fund has had its ups and downs. There are times that I am so sad, or tired that I think I can’t go on, and then I get another email or read of the need for more research, and I am compelled to continue. (I know of at least 2 people who are celebrating their 2 and 3 years of sobriety because of Sean and the Fund .)   The fact is that in order to effect our ambitious, but essential mission, we must guarantee sustainability.

Sean will be gone four years this April. To me it is yesterday, today. For some, it may seem forever ago as life goes on in their own natural rhythm. This Fund is no longer about Sean. It is about the 3 people in the room (in a room of musicians, that number would be more like 6) who still have a life ahead of them. It may be up to us to make sure it’s a healthy, productive one. The Fund needs your talent, your time, your donations and your heart.

In this month of remembering whom we love, remember that no one ever recovers from the loss of a loved one, and everyone is worth the best that medicine and research can offer. I know that Sean did and so do each of you.

With Love,

Debbie Smith

* Be sure to attend our next Beautiful Mind Lecture and Performance at the Briarcliff Campus of Emory University on March 14. The topic will be Bipolar Disorder and Addiction.

 

Season’s Greetings and Wishes for a Bright New Year.

Season’s Greetings…some people are offended by the use of the term, as if it defames the religious intentions of the holidays. I believe it encompasses the entire season of giving thanks, remembering, and hoping for a better future that starts with Thanksgiving and ends with New Year’s Day.  In both the Jewish and Christian worlds, December’s holidays connote light in the darkest of seasons, and a feeling that there is a spirit greater than us, there to support us in times of need.

For me, this season is bittersweet. The memories of Sean, my Mom and Dad come in waves of smiles and tears. The Fund was founded in Sean’s name in the hope of providing a better future for those who struggle every day with the ups and downs of bipolar disorder, harnessing their creative energy to produce light from their struggle. For each of us, this is a time of examination. Do we feel fulfilled by the past year? Do we end the year with the joy of our friends and family? Most importantly, do we know that there is light and hope for our future?

As founder and President of The Sean Costello Memorial Fund, it’s my job to analyze our successes and see if we are able to meet the challenges of the future. These results are not linear, nor absolute, but, for the Fund they remain hopeful. This has been a year of unimaginable growth in the recognition of the need for our work, with international exposure (Vancouver and Rome). I’ve even been approached by a world renowned psychiatrist in New York to come and visit, as she is impressed with our mission. We’ve also initiated our first program series, Beautiful Minds, in conjunction with the esteemed Emory University, a designated Depression and Mood Disorder Centers. These milestones certainly underscore our legitimacy and importance, but there is so much left to do. As in all efforts, success takes time, talent, attention and resources. The Fund has progressed through the generosity of volunteers, but that model is not sustainable in the long term.  The non-profit world is very difficult, and eventually, staff will be needed to serve as knowledgeable Fundraisers, Program Managers and Grant Writers. This will take financial resources, some from grants, others from corporate sponsors, but the heart and soul of a mission driven organization is the individual who is passionate about the cause.

I’ve said it before, and I can never stop reiterating, the Fund is you. Without your support, whether as volunteer, via in-kind or monetary donations, we would not be able to continue to exist. Given that we are the only organization that is doing what we do for the community that means so much to us, the light of hope would be extinguished.

This has been a tough year for all of us financially. If you can find it in your heart to donate any amount, no matter how small, you will be the candle, which, when joined with a thousand others, will provide the light of hope, a light, that thanks to Sean, keeps on shining.

Season’s Greetings and Wishes for a Bright New Year.
Debbie Costello Smith
The Sean Costello Memorial Fund for Bipolar Research

The Soul in the Man and his Music

I know that I just finished a blog, but I feel compelled to write this today. While cleaning, I happened upon the movie, Ghosts of Mississippi, about the murder of Medgar Evers. During part of the movie, his brother, a DJ, played blues in his honor and spoke of the legend of Robert Johnson. Legend has it that he sold his soul to the devil to be able to play the guitar as well as he did. It couldn’t help but bring back memories of Sean. Sean never sold his soul, and his musical talent was a gift from angels. You can see it in his face.

The thing is, I write about bipolar disorder and Sean’s battles with it. Have I written enough about Sean?  I think not. I am doing him an injustice if I don’t reveal the depth of his soul. Sean was an encyclopedia of the blues, and the blues belong to the blacks of the South. They were often songs of pain, but just as often, songs of the joy they found in life despite what they faced. Sean’s attachment wasn’t superficial. He felt their feelings. It may have started when he was about 8 years old. (I may have already told this story, but it’s the beginning of his empathy for a culture that was as far away from his as possible). Sean came home one day and told me he got the lead in a play. I asked who it was, and he said, “I don’t know, but he says ‘I have a dream.’” I told him not to bank on the part, but he was given the lead role. He and his sister went to a Magnet school on the border of Camden, New Jersey. It was a very racially mixed school and Sean was as blonde and white as a kid could be. He studied tapes. Read books. Was deliberate in his outfit (no pink ties in 1963).  He was so enraptured with Martin Luther King, that he could replicate his accent, certainly his passion. Sean surprised me, more than anyone, when my very shy son brought the audience to tears, as well as the High School to a standing ovation.

I’m not sure that connecting with Felix Reyes at a guitar show was an accident. He was already engaged in the history of blacks in the South. He played the songs of old bluesmen with reverence, and never marginalized the blues. It wasn’t just a way to play killer guitar; he felt the music from the bottom of his soul (and the tips of his toes, if you watch him play.)  I consider myself a champion for the underdog and always chose to work in places with a mission, but today, I realized that I never felt hurt the way that he did. One day, I told him how much I loved Charleston. He replied that he didn’t like it at all…”it has a heavy slave vibe…can’t you feel it, Mom?”

His empathy didn’t stop with blues or the plight of blacks in America. As a gifted student, he and his class watched a film on Auschwitz. After the film, he was in PE when some kids said they were going to form a Nazi party. Sean was a pretty popular kid, and not one to rat out another kid. Nonetheless, he went to his teacher in tears and told her about the conversation. His teacher called me, surprised at his reaction, asking “but he’s Catholic, isn’t he?”  (As if that should make a difference!) He asked me not to tell his stepdad about the incident, so he wouldn’t get upset (Glenn is Jewish). That was Sean. Feeling. Advocating. Courageous. Loyal.

His high school years reflected an ongoing connection to other cultures. His first girlfriend was Hispanic (as were others). He was going to Puerto Rico with their family, so he taught himself Spanish, telling me that it was rude to go to another country and not be able to speak their language, or learn their culture. I found out years later (and not through Sean) that he was taking Mexican kids for job interviews, as he was fluent in Spanish.

Why do I feel so motivated to write these things today…stories that I’ve told with pride so many times?  I think it’s because today’s movie brought me to tears in a way that it never did before. I think it’s because I was looking at it through Sean’s heart.

When we talk about someone who is bipolar or has an addiction, we often marginalize them. They become their disease and their humanity is wiped away. Sean has even a tougher time being viewed as his family, and I see him. He would give you his shoes, his shirt, his money, his guitar…just ask all of those people that he gave those things too. Most of all he gave his heart and soul to anyone who heard him play. Nonetheless, he was no superhero. He was a boy and then a man who felt more than most of us do. He lived pretty much unselfishly.  He needed help and understanding…what he gave so freely to others. His vulnerabilities were hidden in the strength of his convictions.

When we talk about people challenged with mental illness, I would wish that we could make two columns to describe them: one, the symptoms that they wrestled with every day; and two, the characteristics that made them human. I think the second column would bring us closer to understanding who they are. It would reflect how they are more like the rest of us than not.

In some cases, like creative people who are bipolar, they feel things with a greater intensity. See things with a greater clarity. Emote things with a greater freedom.

This was true for my son. I am so proud of him. His music was his gift to the world. His person was the source of his music and his gift to those who knew him.

There are many people that knew this side of Sean and just didn’t believe that he wasn’t in as much trouble as he was. Or maybe they ignored it because they needed with he gave them. Unfortunately, he needed the world to replenish the energy he expended. He needed shelter from the recognition of the injustices of the world. I would hope that another Sean gets back from the world what he gives.  Maybe the story of Sean is that there is no difference among people…not race, religion or culture…he didn’t think so. He felt for their challenges as they did. The lesson that Sean can teach us is that there is no difference between us and someone who has a mental illness… we all feel the same range of emotions. Sean’s music lends insight, understanding, fear, sadness, courage. Call it bipolar, or call it human. I call it wonderful.

 

Empathy and Education vs. Stigma

The first week of October has been set aside as National Mental Illness Awareness Week, with October 6 as National Bipolar Awareness Week. This dedication came at a time when the world was given an opportunity to review its opinion of mental illness, and I’m not sure the verdict was in concert with the government’s intent.

To put it in perspective, maybe I should outline the impact of mental illness and the purpose of the Mental Illness Awareness Week:

An estimated 26.2 percent of Americans ages 18 and older – about one in four adults – suffer from a diagnosable mental illness in any given year. However, stigma surrounding mental illness is a major barrier that prevents people from seeking the mental health treatment that they need. Programs during Mental Illness Awareness Week are designed to create community awareness and discussion in an effort to put an end to stigma and advocate for treatment and recovery.

On July 23, 2011, Amy Winehouse died of undisclosed causes after a public battle with substance abuse. Her death is no more or less important than that of any other person, especially to the parent who has lost a child. There is no greater grief. It’s unlike any other loss. No amount of time reduces the pain. Nothing can fill the void. There is no explanation, as it violates the laws of nature. Given that, Ms. Winehouse’s death allowed the conversation to come to an international forum. What followed is worthy of examination.

The media, pretty scathing of her apparent abuse during her life, seemed to be more understanding in her death, and some actually tried to initiate a conversation about addiction. Little was discussed about her self-confessed “manic-depression” and its connection to her addictions.  The blogs, however, were as vicious as ever. It seems that her Dad has started a foundation and is writing memoirs to tell us about the side of her no one knew. It’s a feeling that I feel all too well.

Amy Winehouse’s death encapsulated three years of my grief and contained anger. I didn’t know her, but yet, I did. She was recognized as being one of the most talented singers of her time, while seemingly flaunting her demons. Everything about her was exaggerated…. her hair, her clothing, her public demeanor…and yet, to the discerning eye, there was a vulnerability that was heartbreaking.

Amy is listed as one of Sean’s top ten “friends” on MySpace (oh, how we’ve morphed in social media in 3 years !). I’m fairly certain she didn’t know who he was, but he recognized her talent and was honoring it.  It had nothing to do with her stand on “rehab.” To Sean, that would have been superficial. It was about her soul and how exquisitely she revealed it.

Sean and Amy were alike and yet different. Amy refused to go to rehab. Sean voluntarily entered it. Amy said she was manic-depressive, but as far as one can tell, didn’t seek medical help for it. Sean went to mental health professionals for years and was on medication. She openly displayed her substance use. Sean kept his to a small circle. She seemed not to care if people mocked her behavior, Sean would have died of embarrassment.

Those are the differences. The similarities run deeper. They both were gifted artists who felt the undercurrent of the world’s emotions deeper than most, while being able to translate it in a way that we could relate to…that helped us get through our own pain. I think Sean’s music was more hopeful and upbeat, a reflection of the resilience and humor that were Sean. He was “determined” as his last status on MySpace indicates. Amy’s lyrics were argumentative… gritty and defiant, yet full of energy, so belying such a tiny person. These are the range of emotions that all of us feel at one time or another, and depending on your mood, the music of one or the other can help you work through your own feelings. Perhaps their music reflected the difference between Bipolar Type I and Type II. We won’t ever know.

Where they again intersect, is in people’s attitudes. I often said that I thought Sean was an appropriate icon for Bipolar Disorder because he was professional, but if it were named after Amy Winehouse, no one would care. I always felt as if we should care just as much, it’s just that I thought people would pass judgment faster on her because of her outward defiance. I was wrong. People apparently had just as much negative to say about Sean. I just never read the blogs where the mud was slung. In the mainstream, both lives were regarded with a complete lack of personal privacy and a thorough lack of knowledge and compassion. Those who knew them may have been left with a complete sense of disbelief and loss.

The only people who really have to live with Amy’s passing are her parents and family. No one else really suffers for a lifetime. People’s connection to her will wax and wane as the next best talent comes along. Even for those who remain true to her talent, their suffering is only manifested in their knowledge of what could have been (that would have made their life better). The exception is someone who was unlucky enough to have experienced what her parents did. I haven’t openly cried much lately, but I cried from the heart when she died. I didn’t know her, but I knew the pain of losing her. I also mourned for the parents who knew the suffering, beauty and strength that only they were privy to.

What I’ve learned in the past three years is that people, even those with good intentions, don’t understand addiction and its connection to mental illness. I’ve learned that the stigma is still so great that artists are unwilling to “out” themselves for fear of recrimination. I’ve read the vitriol from people who relish in others’ suffering, to me, a reflection of their own human flaws. What I’ve seen is people wear pink t-shirts without embarrassment, but people keeping the mental illness of their family members in hiding. The stigma that National Mental Illness Awareness Week is supposed to address is alive and well. Too well. I don’t see the fight to make it right. Given that this affects 1 out of 4 people, a much higher rate than breast cancer, where is the explanation?

I’ve heard people, who had no clue about what Sean revealed to his family and doctors, contend that he was not bipolar. People might argue that Amy chose to live and die by her sword. Whether Amy or Sean were bipolar or had substance addictions, both are diseases, connected conditions, and both have a genetic predisposition. Some people can drink all day long without having a longing for the next drink. Some people try cocaine and can take it or leave it. Not so with someone who is predisposed. One person can eat a piece of cake (or none), the next can’t stop until it’s gone. Is there anyone who really thinks that someone wants a substance (alcohol, drugs, food, nicotine, etc.) to rule their life and health? Some people can smoke and live to 100. Plenty of others never smoke and die of lung cancer. Is it because the latter doesn’t have the fortitude to live or fight cancer? And yet, to this day, we judge people who suffer and die with addictions and other symptoms of mental illness. The sequelae are lack of research, uneducated and often, unregulated interventions.

National Mental Illness Awareness Week has come and gone. The lives of too many wonderful people have been shortened, as we looked the other way on their suffering. It’s time to admit that we all live on the spectrum of mental illness on any given day. We’ve experienced depression, anxiety, the desire to drown our problems in food or alcohol. Imagine living in that state almost every day all day, without being able to figure a way out. I can’t imagine, but I’ve witnessed it and cried over it.

The consequences are as beautiful as they are sad. Lest we forget, people like Amy Winehouse and Sean Costello, because of their vulnerable, sensitive nature left us with a beauty that those of us who manage to live somewhere in the middle of our emotions will never be able to produce. It’s a sad testament to the human spirit when we have to tarnish their ability to rise above their struggle and leave us with a part of their soul. They deserve better than our lack of understanding, our callous disregard for their suffering. They should be our icons for change, not targets of our own fear.

I challenge you to get involved. Help us with your ideas, your feedback, your donations. Educated yourself. Open your mind and your heart to those who have opened theirs to yours. Most importantly, be there for them. Mental Illness is a lonely and dangerous disease.

May is Mental Health Month

May is designated as Mental Health Month, so there is no better time than now to review what I’ve learned while in Vancouver and Rome. First, though, I’d like to give some of my own perspective on the topic. As a person who loved physiology, it’s amazing to me that we separate mental health from physical health. There is no separation of any aspect of our bodies…. everything is totally interrelated. Just think of the reaction to stress (the Fight or Flight reaction). Our adrenals pump cortisol which diverts blood from our stomach to our muscles, so that we can fight the stressor, or if, for example, it’s a battle we can’t win, like fighting off a bear, we flee. Our senses are heightened, but normal body functions are on pause. This takes a complicated interdependence of senses (sight, smell, hearing), brain interpretation, and muscle response. We now know that ongoing stress, the bane of modern life, causes damage to our bodies, because we can’t reconcile the stress simply by running or fighting. If we did, we’d lose our job, abandon our car on the highway, or rob banks to pay our bills!

Each part of our endocrine system (adrenals, pituitary, ovaries, etc.) feeds hormones into our bloodstream to set in motion the things of every day life that we take for granted…. growth, ovulation, pregnancy, moods, blood pressure, etc. What some of us don’t realize is that there is a biofeedback loop. None of these glands operate independently of the other. My point is that our physical bodies and mental health are not independent of each other. Too much stress and we can get depressed. Inability to fix something serious may lead to anxiety. These can lead to stress ulcers, substance abuse, etc.

It’s unbelievable that when we can go to the moon (decades ago) and recreate life, but we still can’t communicate how our brain works and affects our life and health, and how our life and health affect our brain. For some reason, anything that has to do with chemical imbalance that results in mood disorders is something to be ashamed of. If we inherit diabetes, we are not made to feel guilty, but inherit bipolar disorder and we hide or are stigmatized. Just as genetics and food and exercise and stress and sleep can exacerbate diabetes symptoms, so can they affect our mood.  We need to consider all of these factors when looking at mental health. There is, for example, literature that shows that light and exercise are extremely powerful in combating depression. We have yet to learn the impact of food, though we do know that carbohydrates can cause huge swings in insulin levels and, therefore, moods.

I will spend most of this blog concentrating on some of what I’ve learned about bipolar disorder, but I would ask that each of us remember that balance of physical, emotional and spiritual aspects of our world are important for any part of our health. Bipolar disorder is one mental health challenge greatly impacted by habits, especially sleep. So when you are feeling sad, agitated, anxious, there are many things that can help bring your mind and body into balance…. massage, exercise, sleep, healthy foods, conversation. It’s all about realizing that your physical body and mental performance and mood are intimately connected.

What I learned in Vancouver

In Vancouver, at the University of British Columbia’s Collaborative RESearch Team to study psychosocial Issues in Bipolar Disorder (CREST.BD) program, 22 volunteers who were deemed to be creative and challenged by Bipolar Disorder (BD) attended a Community Consultation Day, with two optional evening programs dedicated to artistic expression (film and music). The volunteers met as a group for an introduction in the morning, then were broken into 4 focus groups. At the end of the day, they came together again for a review of the day. The predominant impression given by volunteers in focus groups was that they wanted to know that they weren’t alone. They specifically said that the day gave them “validation.” The people in this group were selected because of their creative nature, and many different kinds of creativity were represented. Few were musicians, not unexpected when they had to be there at 9 AM!

Both in the groups and general discussion, the participants often were often emotional, expressing sadness, frustration, even anger about how they are treated by practitioners and people in general. Each one had their own individual story….. frequent problems with jobs, postpartum issues, social isolation, but they all agreed that they were hungry for the opportunity to meet with a group who understood and practitioners who respected them.

The results of the focus groups have not been tabulated yet, so I can’t speak in specifics; however, one thing that everyone agreed on is that mania is not the state when they are most creatively productive. In some cases, people felt as though they had some intense insights that could only come from mania, but that they needed to be refined when in a more controlled state. Further, depression resulted in an inability to effect creative ideas. The best place for creativity is that “soft spot” between the two (euthymia), when there is a feeling of happiness and energy. This is a critical admission, as the noncompliance with medication is often contributed to the fear of loss of creativity that comes with mania. As I found out in Rome, the complications of mania alone are serious enough reason to avoid it. Nonetheless, an artist will often jeopardize himself or herself for the need to express themselves in their chosen art form. These findings suggest that it is not necessary, in fact, counterproductive.

When the results of these two days are published, I will be sharing them with you. The  two things I left with were: (1) there is a need to talk about bipolar disorder out in the open, and (2) the talent, beauty and creativity represented bring a wonderful dimension to life and our world, such that people were happy to be themselves and wouldn’t trade their creativity for the lack of BD. Both of these perspectives validate the mission of the Sean Costello Memorial Fund. Interestingly, I received personal thank yous from several people for starting the Fund and for introducing them to Sean.

Rome

The experience in Rome was much different than Vancouver. The International Review of Bipolar Disorders (IRBD) is an international conference on bipolar disorder with 1400+ attendees from around the world. (I met people from Britain, Syria, Iran, France, just to name a few.) Most of those in attendance were practitioners who work in treating or researching bipolar disorder. The crème de la crème of the bunch were the presenters. Among them were Sheri Johnson, Erin Michalak, Greg Murray and Eric Youngstrom of our advisory board, Eric presenting 3 different times. Given that the other presenters were researchers recognized for their knowledge of bipolar disorder and recent breakthroughs in treatment, the Sean Costello Memorial Fund was showcased in an amazing way. To me, it was both exciting and humbling.

Unfortunately, it is impossible for one person to attend every session, and there were several times when I didn’t know which session to pick. For the ones I did, the attendance resulted in a huge auditorium plus balcony filled to overflow (I sat on the steps for one session!).  The other down side was that slides were not handed out and many of the presenters spoke in broken English, so it was a mad rush to copy what was on screen, while trying to interpret what was being said J

What was repeated over and over again was the term  “bipolar spectrum.” It was suggested that bipolar disorder includes everything from Cyclothymia (with or without obvious symptoms) to Borderline Personality Disorder. Further, BD does not necessarily present itself alone, but with other comorbid anxiety disorders. The most common of these is Social Phobia, followed by OCD (Obsessive Compulsive Disorder) and Panic Disorder/Agoraphobia.  OCD is found in about 55.8% of people who are bipolar. An important thing to note is that when social phobia is treated with antidepressants, it leads to hypomania[1], which, in effect, worsens the symptoms. It was even stated that if there is a first degree history of bipolar depression, one should not be prescribed antidepressants.

Panic Disorder occurs in 15-37% of people who are bipolar. Panic disorder is more prevalent in families with an increased incidence of Bipolar Type II. [2] People with Panic Disorder tend to have ‘rapid cycling’ which is difficult to manage (people cycle quickly from depression to hypomania or mania.) The distinction between BD and Borderline Personality Disorder (BPD) is not clear, as cyclothymia[3] overlaps both.

One thing that was described in detail was the Impulsivity in Bipolar Type II. The manifestations of this impulsivity are: substance abuse, increase in risky sexual behavior, aggressive behavior, impaired impulse control and self-stimulation via sensation seeking behavior (via work, sex, food, drugs, gambling, sports, internet, etc.).  It was stated that BD Type II is 6x more prevalent than currently being diagnosed, with depression being the catch-all diagnosis. I was also told that most practitioners are not up to date on the diagnosis of BD, especially Type II, so it is important for the consumer to be educated about the symptoms; otherwise, there is a big chance for misdiagnosis and since the onset of treatment is directly related to outcome, this  information is important.

Future blogs will explore other topics and information about bipolar disorder. To be honest, some of the presentations were for practitioners with advanced knowledge and ended with more questions than answers. I think that the world of bipolar disorder is in the same place…. more questions than answers. Because the statistics suggest that a little more than 4 of every 100 people in the US are bipolar, and because the cost to society is almost immeasurable, the push for answers must continue. Hopefully, the SCMF will be an integral part of improving the outcomes of intervention by helping communicate the need for attention to this insidious and dangerous disease.

I really wish to thank everyone who ever contributed to the Fund. Without you, we would not have been represented in Rome by our science team, nor would I have been able to attend the conference. The important part of my going was to reinforce my determination to keep moving forward with our mission.  There is much to learn and communicate and even more to discover. Dissemination of this information is the first step to improving the lives of people who are challenged by this complex disorder. As the body is an integral whole, so is the universe. It is in each of our interests to help people who suffer with any mental illness feel accepted and hopeful. The creative talent represented by BD is even more reason for us to become educated and proactive. I think of Sean when I hear BD…. whomever you think of is a reason to participate in this worthy fight.

Debbie Costello Smith

 

‘Tis the Season

This is the season of giving and receiving presents; a way to recognize the love we have for each other. When we examine the genesis of the season, it really represents a celebration of life (Christian) and light (Hanukkah)… another metaphor for life.

The Fund is a celebration of life and light as well. Sean lived a full and adventurous life… one that few get to live: and, he gave off a light that still rests in the hearts of those who knew him. For his family, of course, this season is bittersweet, as we cherish the loved ones we have here on earth and miss the presence of Sean and other family members who are no longer physically with us.

It is my wish for Christmas that you view the Fund as a generator of sorts, keeping Sean’s light alive so that others may live a healthier life. Mental illnesses still carry a stigma like no other. Admitting that you are bipolar or depressive, etc., may disqualify you for a job or ostracize you from people who were once your friends, maybe even family.

Research about mental illness has improved, but it is still light years behind other diagnoses. The Mental Health Association reports that 1 in 5 people will have a mental illness…. a full 20% of our population; yet, if someone has insurance (which many don’t, often due to the disabling symptoms), it may not cover necessary services, or severely limit them. In a country that boasts of equality, the disconnect is obvious.

There are many worthy organizations related to the causes and treatment of mental illnesses, all striving for what little monies are out there to realize their mission. We are a young and small one, with a primary focus: researching the relationship between bipolar disorder and creativity, resulting in effective interventions for this population. We also hope to reduce the stigma of mental illness, using Sean as an example of a wonderful, highly intelligent, gifted, responsible person who happened to struggle with anxiety and depression.

Creative people, like musicians, bring their own unique light to the world and certainly give us insight into our own lives in ways that reach to our very soul. This creativity is a gift to them as well as to us, but like everything else in life, it comes with a cost. For musicians, that cost can be very dear, as they maintain a lifestyle that flies in the face of healthy living…. late nights, disrupted sleep in long van trips, a world of alcohol at every job. Often, to survive, they have two jobs to be able to support their family, with even less opportunity for sleep. While it looks appealing to be on stage with people applauding, the sequelae to that aren’t ones to envy… loneliness, adrenalin pumping with no place to dissipate it and sleep disturbances…. all leading to a cyclic pattern of trying to stabilize their world. Nonetheless, they have to play the next gig in the next town or they may not get booked again. No sick days because there is no sick pay.

We would be in a much darker place without music and other forms of the creative spirit, so it is really a gift to us to recognize the beauty of their art by supporting them and supporting the only cause dedicated to helping their unique needs be met in an effective and creative way.

Some of our very favorite gifts tarnish, break or are lost. So, may the lives of our favorite people. When we really cherish them, we try everything we can to mend them. When they are lost, we have a way of re-gifting to ourselves: memories.

This year, I will light candles for my Mom and Sean who left us too soon, and too close together, and I will wish for memories that will spark the light so I can celebrate their lives. Sean’s Fund is one way that allows me to remember him and, in that experience, to help others who have told me that their life is a mirror of his. As long as there is hope, there is light and a reason to live.

My wish for you is that your holidays are filled with laughter, the circle of people who bring you joy, and memories that light the darkest part of your hearts.

Debbie Costello Smith on behalf of all of Sean’s family

And just one wish from you to me….

Support the Fund this December by voting for the Mojo Project. An intervention that could literally save a life, but will certainly aid musicians in their effort to stay healthy and on course. For more information, please visit: http://www.seancostellofund.org/themojoproject.html

End of Year Summary, 2010

The Sean Costello Memorial Fund for Bipolar Research is nearing the second anniversary of receiving its non-profit status. We have tried to keep you updated with our progress with most of our news being geared toward fundraising and celebrations of Sean’s music. As a new non-profit, this is to be expected…. no money, no mission! An all-volunteer organization, we are totally dependent on the generosity of people who give of their time and talents toward our fundraising efforts. Sometimes, even I wonder when the fundraising will result in a tangible realization of our goals. The Fund’s purpose is to get answers to many unanswered questions, and fundraising is time consuming and not always that profitable. While they may not always result in huge profits, they serve many other purposes, not the least of which is spreading the word about the Fund while keeping Sean’s legacy alive. We do need to find new avenues and audiences for our mission, which is not limited to blues musicians, and, in fact, has relevance to all creative communities.

This year, however, I am excited to announce that we have actualized the mission. The Fund sponsored a conference of three members of our Scientific Advisory Board in San Francisco (Drs. Sheri Johnson, Greg Murray, and Eric Youngstrom) with the purpose being to analyze data to determine the relationship between creativity and bipolar disorder. Additionally, the data were used to evaluate the impact of mania on creativity. One issue with medication compliance is that people who are bipolar believe they are more creative when they are manic. If there is scientific evidence that this is not necessarily true, artists and musicians may be more willing to remain on their medication regimen. The results of this conference were so significant, publications are being submitted to scientific journals with plans for presentations in Europe and the US. Additionally, there are plans for a Conference in Vancouver where people who are bipolar will meet together with scientists to discuss issues that are at the core of our mission. In each of these cases, The Sean Costello Memorial Fund for Bipolar Research will be cited. We will have international exposure and recognition for asking questions that no one else posed and providing resources for answering them.

In addition to the above, Sheri and Greg have collaborated on The Mojo Project that is currently in the running for a $50,000 grant from Pepsi. Mojo is an internet and mobile based application to monitor sleeping patterns of musicians. Sleep deprivation is known to be a trigger for mania which often results in risky or dangerous behavior. This would be a groundbreaking resource that helps address the uniqueness of a musician’s lifestyle while offering them real time assessment of the onset of mania along with resources for intervention. This is incredible! Two renowned scientists using the latest in technology to effect better outcomes for musicians with bipolar disorder.

The reality, however, is that our work has just begun. Not until we have answers about how a creative mind works can we offer effective and possibly life saving interventions. It will take time and money to support research for evidence based care for people with dual diagnosis (bipolar disorder and addiction). Given that addictions and bipolar disorder go hand in hand, this research is essential in stemming the emotional, financial and social impacts of dual diagnosis.

Knowing that we are on the cutting edge of research that has attracted the best and the brightest in the field, we cannot let the challenge of resources stop us from progressing. We have been blessed with in-kind donations from supporters worth tens of thousands of dollars. The office is in our home and no one collects a salary. We direct all of our resources toward a mission to which we are committed. Nonetheless, we need to grow to succeed. We need professional fundraisers to reach out to new audiences, grant writers to secure necessary funds for important research, and that means money. We have come full circle… no money, no mission.

In the spirit of the season, we are asking our supporters to give a tax-deductible donation to The Sean Costello Memorial Fund for Bipolar Research. The economy has been hard on us all, but we cannot fail. We have the potential to be the catalyst to life-saving research and programs…. HOPE, where there has been little. We are supposed to be doing what we’re doing. I’m sure of it, but I need your help.
You are the Sean Costello Memorial Fund.

We are asking each supporter to donate $100 or whatever amount you can afford.*
Thank you in advance for your continued support.

Happy Holidays to you and your family.
May your holiday season be peaceful and bring your family together in joy.

With Love and Immense Gratitude,
Debbie Costello Smith


The Mojo Project

SCMF is competing for a $50,000 grant from the Pepsi Refresh Project during the month of December. The winners will be decided by popular vote. SCMF needs your votes every day in December!  Voting is as Easy as 1-2-3. THREE votes. THREE ways. EVERY day. Sign up for daily email reminders for a chance to WIN AN IPAD!

1. Vote Online (December 1-31): Go to http://www.refresheverything.com/themojoproject2. This will take you to the SCMF Pepsi online voting page. Click “Vote for this Idea”. Register and return to this page every day in December to vote.

2. Vote on Facebook (December 1-31): Pepsi Refresh Vote & Share application
To install application, go to http://apps.facebook.com/pepsirefresh/. You’ll be asked for permission to access your information. Click “Allow”. This will take you to the Pepsi Refresh Vote & Share application. If you don’t see The Mojo Project, please search for it. Click “Vote for this Idea”. Be sure to click “share this idea” to encourage your friends to vote for us on Facebook. Do this every time you vote!

3. Text your Vote (December 1-31): Text 104661 to 73774 (PEPSI) every day in December. Normal text rates apply. How do I text?

What Else Can You Do to Get More Votes for SCMF?

• Bookmark our voting pages above. We need you to vote every day in the month of December. Anyone age 13 or older can vote.
• Tell your friends on Facebook by copying and sharing this link: http://seancostellofund.org/themojoproject.html
• Email a link to this page to all your friends and family, asking them to vote for SCMF every day. Click here for a sample email letter.
• Become a member of the Fund’s Facebook Cause page, and invite all of your Facebook friends to join too!
• Hand out flyers and cards to friends, and at meetings, religious services, sporting events, etc. (Download Mojo Project Flyer)
• Ask your local newspapers or radio stations to promote SCMF’s Mojo Project.
• If you have an iPhone, Pepsi Refresh has added an application.  Please download the app and vote through your iPhone!

If The Sean Costello Memorial Fund for Bipolar Research wins the Pepsi Refresh Project, everyone who registers for a daily email reminder at http://www.seancostellofund.org/themojoproject.html will be entered to win an iPad. Pepsi does not charge for texts; normal text rates apply. Pepsi does not collect email addresses for marketing purposes.

From Mother to Son

It was your birthday,

The day you were born

No words could be spoken

What could I say?

This bond couldn’t be broken

There just was no way

When you first smiled

I couldn’t speak

Amazed at your wonder

In your crib I would peek

I was your mother

Your passage to life

Yet, I did not know you

Like husband and wife

You took in your own world

Stayed close to mine

I watched you with wanting

What would you find?

Joy everlasting

Love and your way

Keeping an eye

While not blocking the way

I couldn’t tell you

All that would come

I just watched as you reached

Far from my womb

A mother cannot let go

How hard tho’ they try

They only pretend

While keeping an eye

Guiding and hoping

That one day you’ll see

The words kept and spoken

Were just meant to be

Light on the path to your future

The safe road ahead

There is no way to tell you

Now that you’re gone

How hard that I tried

To be the right one

The one who could love you

And let you be free

To live your life fully

But able to see

That I was put on this earth for you

For eternity

And now there is silence

Since you’ve gone away

No music can help me

No words can one say

For you are my baby

My love and my heart

And now you’ve been taken

How do I start?

To tell you I’m sorry

My words didn’t heal

The burden you carried

The way you did feel

I’m hoping the wind

Will find you for me

And tell you I miss you

And how hard I tried

There are no more words now

Just how hard I’ve cried.