05:
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
30:
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.
16:
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
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.
11:
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
[1] Hypomania is a less severe form of mania. Hypomania is a mood that many don’t perceive as a problem. It actually may feel pretty good. You have a greater sense of well-being and productivity. However, for someone with bipolar disorder, hypomania can evolve into mania — or can switch into serious depression. (Web MD)
[2] Bipolar Disorder Type II is defined by a pattern of depressive episodes shifting back and forth with hypomanic episodes, but no full-blown manic or mixed episodes. (NIMH)
[3] Cyclothymia is a mild form of bipolar disorder in which a person has mood swings over a period of years that go from mild depression to euphoria and excitement (PubMedHealth)
22:
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
13:
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
01:
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.
31:
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.
31:
It was Mother’s Day in the US, but I was in London. My daughter lives there and did all that she could to make it a special day for me, and she did a wonderful job. The thing is many holidays are bittersweet these days, and this one was, particularly this year. My Mom passed just about a month ago and Sean passed just 2 years ago. They are buried next to each other on the same hill in Atlanta, along with my Dad. Sean was very, very close to my parents, and so it is fitting that they spend eternity next to one another. A day that’s supposed to be a tribute to me as a Mom, brought me to tears right in the middle of an upscale, waiting- line-outside restaurant that my daughter picked out especially for me. Somehow, without my Mom to call and without Sean to call me, it was still sad.
There is much that links my mother and Sean, one of the most significant being anxiety. I have spoken before about Sean’s social anxiety, and the fact that it is a frequent partner to bipolar disorder. I have not discussed in any detail what anxiety can do to your life largely, because I didn’t appreciate it until this last year. To me, it’s a demon that eats you from the inside out, warping your perspective on yourself and the world. It can be crippling to the sufferer and exhausting to their family and caretakers.
Different from the everyday anxiety that each of us has experienced (e.g. I date new date, your wedding day, etc.) an anxiety disorder is constant, unsubstantiated and is an impediment to our daily existence. Unlike everyday anxiety, this takes feeling awkward about a social situation to avoiding social interaction for a real fear of being embarrassed or judged. It exaggerates the sweating one might have before a big test, or the jitters of getting married to a panic attack. It’s irrational fear, excessive or compulsive behaviors that must be repeated, possibly with nightmares or inability to sleep due to worry. These emotional symptoms may be accompanied by physical symptoms as well: irritability, muscle tension, inability to sleep, headaches, etc. This disorder may affect 6.8 million people or more in any given year, more often in women, and can begin at any point in one’s life. The causes aren’t really known, though genetics and environment are connected in some way. (See http://www.nimh.nih.gov for more information)
Why am I spending so much time on this? Because in the past year, I have seen anxiety that was so severe that it crippled someone I loved. It changed who they were and how they saw others, and it exhausted those charged with caring for them. This person went from a relatively independent, very bright individual to one who couldn’t handle the slightest stress or issue. Witnessing the decline of self-reliance, self-esteem and the increased frequency of panic over such things as having to wait in a doctor’s office was extremely sad. The amount of energy spent answering phone calls about things which seemed blown so far out of proportion was incalculable. In the end, there was an ever widening circle of approach avoidance, where the caretakers would avoid contact with the anxious person, which would increase their anxiety and need to connect.
During this time, many medications were used to try to control the level of anxiety, which was increasing exponentially with any new stress (physical illness, payment of a routine bill, etc). In their case, nothing was strong enough to give relief to the benefit of any involved party. Finally, a mood stabilizer was introduced, as it was determined that this individual had a mood disorder (perhaps bipolar disorder) and finally, the relief that was remarkable. Unfortunately, it came too late in the progression of this person’s physical illness; nonetheless, it did give the family a chance to relate to their loved one in a way that reminded them of the person living inside the prison of uncontrolled anxiety.
I, myself, have never really been an anxious person, although recently, the odd feeling that something is wrong that you can’t put your finger on, where your stomach feels queasy and you are unable to really think clearly, has hit me on occasion. Sometimes I can recognize the cause; other times I have no clue what the trigger is. Anyway, I’ve never been terribly tolerant of people who seem nervous for no apparent reason, or who need a lot of support just to get through normal ups and downs of life. My perspective on this is so, so much different now. I now can see anxiety as a serious impediment to living a normal life; something that can happen to anyone.
My ignorance and intolerance have been challenged by this experience, as well as the love I have for other people who are very close to me who suffer with serious anxiety disorders, some chronic, others acute. I’m talking about brilliant, lovable, high functioning people who struggle to overcome panic and inexplicable anxiety to get through the stresses of most days.
While there are options for treatment of anxiety, many times it includes drugs that are potentially addictive. Often the anxiety is accompanied by depression, and so SSRIs are introduced along with short-term use of anti-anxiety drugs, such as Xanax and Klonopin. When anxiety is part of the bipolar disorder symptoms, however, SSRIs only exacerbate the symptoms which is why mood stabilizers are used instead. (This is an important piece of information. If someone you know is on an anti-depressant and their anxiety seems to be worsening, or not improving, consider the possibility that they are bipolar). Unfortunately, depending on the extent or cause of the anxiety disorder, mood stabilizers may not be enough, leaving room for much needed research.
In addition to medication, Cognitive Behavioral Disorder is a psychological intervention that seems to yield significant improvement. In a nutshell, the intent is to train a person to recognize the trigger for anxiety and learn to respond in a healthier fashion. Of course, there are many other approaches to psychotherapy, but this seems to be one that gets universal acceptance.
I cannot ever explain the anxiety that I have witnessed in the last 18 months or so. It was so very sad as well as unbelievably challenging for caretakers. I can only say that if you or someone you know has recurrent or persistent anxiety, there is help and definitely hope. There may be trial and error with treatment protocols, but a solution is possible. I would highly recommend tracking your moods on www.moodtracker.com. It’s an invaluable tool for you and your clinician.
I just want to reiterate the importance of identifying any history of bipolar disorder in your family while considering treatment for anxiety. You are your best advocate. And finally, have empathy for the families. Anxiety disorders can be very, very taxing on everyone in the sufferer’s world.
In memory of Antoinette T. Kurz (1930-2010)
Mom, I miss you everyday. Take care of Sean for me.
16:
Time for a blog a friend tells me. He says he’s seeking some of my wisdom. Well, he’ll have to look good and long, for all that I typically expose is my own questions and sorrow, at least that’s how it seems to me. I’ve also gotten feedback about other things that people want to know, not the least of which is more about the Fund itself. Knowing that April will be a tough month and will probably lead me back to reflection about Sean, I think that I will try to explain what it is we are doing and hope to do in the future.
First, let me say that I had no idea how easy it would be to get support for the Fund (Sean’s friends and fans are wonderful) and how difficult it would be to manage the start up. I have done many different things in business, but never “managed” volunteers, nor have I done fundraising. I find both of these things to be challenging for much the same reason: I have a difficult time asking for help. If I’m paying you, that’s another matter altogether, as anyone who has worked for me will tell you. I have no problem setting high standards and exacting them. I do believe that I don’t ask more of another than I do myself, which, because I am such a perfectionist, makes me tougher So, having to ask the support of others who have to have other means of feeding their families and many other responsibilities is difficult. Asking for money is worse. That I leave to others. Telling the story of how our mission evolved is easy. Finding ways to make it happen is challenging.
We have only been a designated 501 (c)3 organization for over a year and what we have accomplished is amazing. (Our Annual Report is available on line for review.) However, as has been said to me, we kind of put the cart before the horse in a way. Typically, you start with a business plan and then get to work. I started with a story and a conviction and an avalanche of support propelled us way ahead of the infrastructure needed to sustain that momentum.
Operations I do understand, and for any organization to succeed, it must have rules, guidelines, structure…. a plan. So last October, we gathered the majority of our board members in Atlanta for a 2 day Strategic Planning meeting that was very productive. We were able to hone our mission and vision statements and decide what we did and did not want to be. This was much more complex that it seems on the surface, for the clarity of the mission is paramount to both the organization and its donors, customers, etc. What we are not is just as important as what we are.
Our finalized Mission Statement is:
Uniquely focused on the needs of musicians with bipolar disorder, The Sean Costello Memorial Fund for Bipolar Research supports and conducts research on bipolar disorder and creativity while promoting awareness, providing education, and serving as a resource for these musicians and their support systems in order to foster acceptance, functioning and health.
Our Vision Statement is:
There is accurate, timely diagnosis, effective treatment, and social acceptance of bipolar disorder so that musicians achieve wellness while pursuing their creative aspirations.
We also listed the challenges and the strengths of the organization, both internally and externally and there are many of both. This kind of exercise allows us to formulate a strategic plan that will be our template for moving forward. As you can imagine, “managing” a board of individuals from all over the country and different time zones is challenging; however, the commitment of each member and their availability and flexibility has been nothing short of amazing to me. Again, a testament to Sean and them.
As committees, we meet on a regular basis to address things like: fundraising, grant writing, finance, compliance, etc. As a board, we intend to meet twice a year. This year, as we strive to put a solid foundation under us, so that the organization can survive and grow with our without any of us, we realize that, as the nuns used to say at the hospital where I worked: “no money, no mission.” While that isn’t exactly true: we will always have our mission; it is true that we do need funds to do what we propose. Sometimes those funds are in-kind donations, like printing; others times, we will need money.
Our plans are to try to raise the awareness of our cause and we will be communicating ways that you can help us. Simultaneously, we will be developing fundraising campaigns with a national focus. To date, a good portion of our funds have been raised regionally. It is important, we feel, to explain how the donations are going to be used.
We have three main goals as a Fund: (1) researching the connection between creativity and anxiety and bipolar disorder; (2) providing information about access to care and education to musicians who are bipolar and/or their support system; and (3) researching the availability of and/or developing evidenced based treatment for a dual diagnosis. While we are not in the position yet, it is a dream of ours to have a place for musicians/creative people to receive care which uses evidenced based care guidelines. We would want it to be named in honor of Sean.
These are lofty and aggressive goals, especially considering the economy and the number of other organizations seeking funding and acceptance. However, there is none totally focused on the unique needs and personality of musicians, nor really creative people in general. The first phase of our plan must be organization for obvious reasons. At some point in the near future, the board may deem it appropriate to hire someone who has the expertise in non-profit management and funding to give us the experience we need to access funding.
The first logical thing to explore is supporting research on the topic of creativity and bipolar disorder. We were founded on the belief that creative people think and react differently and may need specific interventions. We also need to know how medications affect the creative process – an important consideration to foster compliance.
It is also our belief that we do not want to present the same thing that is being offered elsewhere if it’s not working, and it isn’t. We want to gather data that will tell us the best way to offer hope and wellness to someone who is a musician and bipolar. We believe that it is not only possible, but that it’s necessary and better for the community at large.
Simultaneously, members of our Program Committee are working on research of evidenced based treatment guidelines. Hopefully, by working both of these ends at the same time, we will move more quickly to an approach that is valid and effective.
As we begin to ramp up our efforts, it is important for all of our supporters to know what it is we are doing and intend to do. As significant, is the feedback and input that we can get from the community that we wish to serve. We have the hardest working, most talented group of individuals on our board, but we are only as successful as the community senses our worth. In other words:
“We got to just keep pushin’ every day…”
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