ORIGINS

Two weeks ago, we celebrated significant holidays of two major religions: Easter and Passover. Easter, of course signifies the Resurrection of Christ giving believers the promise of a new life, a rebirth. Passover is a remembrance of Yahweh’s saving the Jews from one of the plagues He placed upon the Egyptians to ensure their release from slavery. Lamb’s blood was placed over the door of the Jews, and the Angel of Death passed over it; thus, saving their firstborn. Interestingly, Christ is often referred to as the ‘Lamb of God.’ Easter’s iconic representation is a bunny delivering eggs and gifts to children in baskets on Easter morning. Today, Easter may be celebrated without the religious connotation, simply a reason to celebrate. In researching this tradition, I found that the roots go back to pagan rituals honoring the onset of spring, with both eggs and rabbits representing life and fertility. It may not be coincidental that each of the religious holidays falls at the beginning of a season of hope and new beginnings.I was given a gift of birth and new hope the Easter of 1979. Sean was born early in the morning on the day after Easter, after spending most of Easter Sunday in active, painful labor. He was a large baby, almost 8 ½ pounds and over 21 inches long, and there was to be no pain medicine for me. I was going to give my baby the very best chance at life. I honestly don’t remember Easter day, except for the incident where I apparently attacked my unsuspecting sister… nerves can get pretty raw when you are in labor! I also allegedly vowed to never have another baby. Nature seems to have selective memories at time. I do vividly remember that, given I was going to nurse, it would be the last day for some time that I would be able to eat chocolate. It’s so funny how little things become important when they are no longer an option.Sean was a beautiful baby, born as my mother would say ‘with a veil,’ meaning that the amniotic sac was still on him at birth. For Italians, that foretold an ability to see things that most others couldn’t’, a sixth sense, if you will. I am told that I had the same. Sean’s sensitivity was demonstrated very soon thereafter, as his skin turned bright red from an allergy to the hospital detergent. That surely was a sign of things to come. I guess you could say that my hiding in the bathroom when they came to take him for his circumcision may have given a glimpse into my own connection to him and his pain.

Sean and Bridget, Easter 1982

There are 28 years of stories to be told of Sean’s sensitivities, his attachment to me and mine to him, his struggles with chronic illnesses and his incredible talents, generosity and humor. They are the making of a book if I had the discipline and strength to write one, and certainly off topic for the purpose of this writing. Today, I want to tell the story of the origin of the fund.About a month prior to Sean’s passing, he and his band went through a very tough time that took a toll on a Sean that already was teetering emotionally and physically. Like many members of my family, he had struggled with alcohol for years and at various times was successful in attempts at sobriety. At one point, he was sober for over 2 years. There were huge disappointments in his career that were no fault of his own (the bankruptcy of Artemis immediately after the release of his self-titled CD, for one) that hit him very hard. Sean was totally committed to his music and friends and never understood when things went wrong. Trust me, he wasn’t always easy to deal with. No very talented, creative person is. He knew his mind and had a strong will. He certainly wouldn’t have been able to lead a band of people much his senior while still a teen if that weren’t so. Nonetheless, he was always loyal and forgiving, and was hurt very easily. He never held a grudge and felt very guilty whenever there was a falling out. It resulted in energy that was going out of him more than energy that was flowing in. Balance was something he reached for, but never quite grasped.A few weeks before he passed, he admitted that he needed help. He just wanted to be ‘normal.’ We had, together, gone through many counselors and psychiatrists, trying to find one that could help Sean. He often asked me why he couldn’t feel better while others did. He agreed that he needed rehab and I sought the best one that I could find that knew how to deal with bipolar disorder and addiction (Sean had only recently been diagnosed with Bipolar Type II). I knew nothing much about bipolar disorder, but a fair amount about alcohol addiction, but that experience was some time in the past. I read what was necessary: treating both conditions, medications for craving, individual therapy; and, found one that documented that they did it all.The Friday before he was admitted, Sean played ‘The Last Waltz’ at Smith’s Old Bar. He came home so excited, telling me that he only had one beer before he played. He had told me in the past, that he drank to calm his nerves before playing. On Saturday, we spent a great day together, and watched ‘The Fabulous Mister Ripley.” I can’t remember the last time before that when we had uninterrupted conversation and connection. Often, there was tension between us. I was worried and he knew that I was. Our sensitivity to each other often became a liability. Sunday was a different matter altogether. He went to Northside to play a part in a movie being filmed by a friend and came home obviously on something. He was scared to death about going into rehab, agitated, and flippant.That night, he came to the top of our steps and told me he couldn’t do it. I responded that we would wait until morning, and if he still didn’t want to go, he didn’t have to. I thought there was no sense arguing or increasing his anxiety. In order to sleep, I discovered that he had taken several Tylenol PM. I spent the night wondering if I should call 911. I had done that once, not long before this, and they discharged him in a circumstance worse than this. He was furious with me at the time. If I called them now, the night before he was going to voluntarily get help, I believed the opportunity would be lost and he was in crisis now. I spent the night on the floor of his room, checking to see that he was breathing. I knew that he would be infuriated when he awoke, thinking that I was violating his privacy; however, I was terrified and followed the path that I believed would lead to his recovery.When he finally did awake, I left him to his own and went downstairs and fell asleep. I woke to find his car gone and was sure he had changed his mind. Some minutes later, he returned. He had gone to buy cigarettes. When it was time to go, he said: “Mom, if this doesn’t help, nothing will.” Later, he described that he just wanted to be ‘normal,’ that he couldn’t be ‘sober, Sean Costello, and in a relationship.’ The world was closing in on him and he needed help. At the same time, he was petrified. When you remove an addict’s substances from them, you are stripping them of what they’ve used to cope with their moods, their anxiety and deep depressions. When that addict has a mental illness behind that addiction, the anxiety is that much greater. They can’t just ‘buck up’ and ‘grow up.’ On the way to the place, Sean tried to get out of the car at least two times. His anxiety was off the charts. He was heading into unknown territory, and would be there virtually naked and unprepared. When we finally got there, he became determined and strong and was anxious to enter the program. I was, for the first time in a long time, relieved. He was in the hands of professionals and I didn’t have to worry.That feeling did not last very long. In a very brief summary: they detoxed Sean for three days. During that time, they didn’t give him his BD meds, though they were contracted to. They drove him to a bar on the third and last day of his detox for a gig. Sean called me upset that they blamed him for not taking his own meds, making him feel guilty, even though (1) he was sedated to avoid tremors; (2) we paid for a nurse to administer medications; and, (3) it would have been the wrong, and potentially lethal dose, as compared to that ordered by their physician. There was no psychotherapy until Sean demanded in on his 4th day (remember, Sean was very, very shy). Finally, they told him to ‘grow up’ and ‘do this on his own.’One humorous thing came of this that led me to the hypothesis that creative people needed an approach to care crafted for their unique personalities and challenges. Sean called one day and told me that there was a man there who claimed to be Homeland Security. He said: “Mom, I don’t even think the guy has a job. He has a plain car with a pretend light in it.” When I went to the family night, a woman approached and asked if I were Sean’s Mom. She then told me how funny he was. One of the things they tell you when trying to wean from an addiction is to substitute a behavior. Apparently, they handed out a sheet with suggestions. Sean turned to her and said: “Which one should I do? Crochet or Judo?” Obviously, they did not understand a musician or Sean.The therapist told me not to call him, that she would. She never did for personal reasons; however, did not let me or anyone else know. I had spoken to them throughout these incidents, as Sean was calling me upset. I was on his HIPPA form and had privilege to his information. Sean trusted me and always asked me to go with him to doctors, as he was hesitant, self-conscious and unsure. It was always he and I. He told me and I interpreted. When he left the facility on Friday, he was documented as being manic. He came home and told me that he needed to ‘grow up and do this on his own.’ I was told not to confront him, that the therapist would be his advocate. He packed a few things (his guitar, iPod, picture of Eddie Tigner with Donnie McCormick). This was why Sean was on his own until his death. I didn’t call him because I was told not to. I didn’t know where he was, and he was trying to be ‘grown up.’* (There are many other details of this horrible time.)I found out late Monday afternoon that Sean had called the place on Monday to say that he had relapsed on the weekend, playing gigs they approved of, and that he would be there on Tuesday. This alone tells of a responsible, committed Sean. If he didn't want to cooperate, he wouldn't have called. (They, in fact, told Sean they would be at the gigs to support him. No one came.) I knew that I couldn’t call, but wanted him not to give up because he missed a day and relapsed, so I texted him on Monday night to tell him that I loved him. He read the text. Having been beside myself with worry over the weekend, Glenn scheduled me for a massage that was a Christmas gift on Tuesday. During the massage, all of a sudden, the thought: “Sean is dead!” screamed at me. I tried to calm myself, and, when I left I called a friend to tell her my fears. I had no idea where Sean was or how to contact him. When I got home, the house phone rang. I was still with her on the cell.I later learned that Sean had spoken to a friend Monday night and told him he was unable to sleep for days (the result of mania)** and that he was going to take something to sleep. There was never an indication that Sean wanted to die, and every indication that he wanted to be sober and healthy. Even the rehab staff testified that he was cooperative, ‘nice,’ and determined. Sean died the day before his 29th birthday and two days before celebrating his last release, We Can Get Together, at his beloved Northside.I started the Fund in Sean’s obituary with the incredible, loving advocacy of my sister for two reasons. First, few people knew of Sean’s suffering. I don’t know how many knew of his diagnosis of bipolar disorder. I wanted them to know that he didn’t think that partying was all fun or something to brag about. He hid a lot of what he did from most people, never showing up impaired for a job. He wanted to have a wife, children, a house, and ‘be normal.’ He put his life into others’ hands, despite his fears. Secondly, Sean had the benefit of health insurance and years of mental health professional interventions, along with a desire to feel better. With a Mom with a Masters in Nursing and an awareness of his suffering, if this happened to him, what was happening to others? What I found out has literally blown me away and affirmed my suspicions that neither Sean or I were alone.I really never had the time to grieve Sean’s loss, and just a few days ago, it was seven years. From day one, cards and letters of sympathy and love for Sean came pouring in. I had no idea he had touched so many people. Significant to the mission, the most prestigious of researchers in the field of bipolar research volunteered to be on our board. It was revealed to me that there was little to no research on the connection between bipolar disorder and creativity, and virtually no research on evidence-based care for dual diagnosis.Many, many times over the past seven years, I have wanted to dissolve the Fund, or simply walk away. I am tired and weary. Fundraising is difficult and I am a changed person with the loss of my son. I used to laugh a lot. I believed that if you tried hard and did things for the right reasons everything would work out. There was a time that I was an amazing fighter. I have no fight left. (The only time I was able to muster any energy for a fight was for my daughter, Bridget two years ago.) Research money is non-existent, especially for such a small organization. Even though one in four people suffer a mental illness and bipolar disorder is the 4th most costly disease in terms of disability costs, with 50% of people with BD having an alcohol dependency, we have not been awarded one single grant. Initially, we had a board of professionals and many volunteers qualified in the fields of marketing, research and grants, all friends of Sean, who put their heart and soul into the Fund and great things were happening. We were invited, two years into it, to Rome to present to the IRBC, the largest International Research Conference on Bipolar Disorder! We funded breakthrough research and were making a name for ourselves. Well, volunteers move, have families, go back to school, get burned out, and in our case, feel their founder and president’s energy fade with each passing year. Two years ago, a family emergency took me out of play for most of that time, just compounding loss of direction. I started the fund with a compassion and determination to vindicate Sean’s fate by making sure that it didn’t happen again. To run an all volunteer nonprofit, there has to be a passion for the cause, and ours, at times, seems intangible. Sean’s music legacy is our one tangible, so that is where our fundraising efforts have resided; however, the audience is not big enough to make the impact necessary to achieve our lofty mission, and our donor base has decreased over time as the memory of Sean fades for some. Our message, the urgent need for research, apparently is not being delivered with the emphasis and clarity needed to forward the momentum of the cause.While this all sounds so very grim, there are very many positives and a very strong reason to continue, and that reason is underscored to me almost every day. This disease touches many, many people, and our Fund touches them. I know because they tell me. Too many people, like Sean, don’t know why they feel the way they do, and think they are alone. Just talking about it openly, and using Sean as a vehicle for the conversation, resonates with them. I have literally made friends over the years and know that lives have been saved. All the while, though, I continue to witness the tragic deaths of prominent people: Amy Winehouse, Philip Seymour Hoffman, Robin Williams, etc., etc., as well as the children of friends, who, maybe not famous, are just as creative, important to this world and immensely loved. We have done a great job beginning the conversation about bipolar disorder and the specific challenges of creative people. I think we’ve made a dent in the stigma. Just how people now respond to Sean’s passing demonstrates a huge change in attitude. Initially, there were many disrespectful, ugly comments about his character. As importantly, to me, people have contacted me to tell me how they feel better about themselves and are now able to be more open about their own challenges. We’ve impacted research as well by funding seminal research on bipolar disorder and creativity (see www.seancostellofund.org/research for further information). Last year, we donated $10,000 to Right Turn (http://www.right-turn.org) to go toward a medical records system that will enable them to analyze the efficacy of their care of a population of creative people with addictions, the results of which will be reported in a Harvard conference. Our Science chair, Dr. Greg Murray, is a member of their research team, and a room in their new facility will be dedicated in Sean’s name.We are left, however, with much to do. Donations now do little more than support our minimal cost of operations (phone, web-services, newsletter, etc.). Sean’s Estate has donated all proceeds from CDs sold to the Fund to help subsidize costs; such is our commitment to the mission. We have to go beyond current efforts to reach our goal of supporting the research of evidence-based care for dual diagnosis, and for that we need help… Volunteers for newsletters, marketing, brochures, etc.; donations; sponsors; community advisors to tell us what we need to do to meet community needs and how to reach community leaders; consultants to aid in strategic planning; board members passionate about forwarding our mission; and followers on social media to spread our mission to others. We need a face that people know beyond the blues community that underscores the need for research and care based on that research.Last Thursday, Sean would have been 36 years old. Every year, we have a Mass said in his honor at the church that held the most beautiful, fitting funeral mass for him. His sister found that church serendipitously, and there could not have been a more suiting ceremony, Sam Cooke, Levon Helm and all. This time, I couldn’t go in. I just didn’t have the strength. As always, Glenn had his back and went in without me. (Glenn happens to be Jewish, and has become friends with the Monsignor, the most ecumenical man you could ever meet). Prior to going in, Glenn stopped to pay for parking, as which point a homeless man, who seemed to be mentally ill, approached Glenn and decided to be his companion. I couldn’t hear what Glenn said (I was in the car), but at one point, I saw Glenn gently put his two hands on the man’s shoulders, look him in the eyes and say something in a very kind way. The result was that the man was even more determined to follow him J Glenn proceeded to the church and the man went with him. Glenn later told me that the gentleman circled the church ending up at the pulpit, speaking to the monsignor just as he was delivering his homily. At this point, someone led him downstairs, where they have a soup kitchen. When I see Glenn doing this, I see Sean doing the same. The ritual we had in his honor miraculously found the perfect venue.I teased Glenn that the man was sent by Sean to see if he was still kind to strangers (Sean certainly was), or maybe just so he’d have someone to go to church with. I stayed in the car, feeling guilty that I didn’t go in, but I couldn’t face it. I see the coffin in the front of the church. I see Paul at the piano, my brother breaking into tears at the podium as he tried to speak about his nephew. Sean’s spirit is there, or at least my memory of it is. I think I wanted to spend some time with his spirit alone this year. We then did what we always do… go to the cemetery and try to tame a rosemary bush that is determined to take over all of Crestlawn cemetery, and try to find a way to keep dirt and mud off of Sean’s marker. I talk to Sean here. To my Mom, too, who is right next to him with my Dad. Her miniature Christmas tree, planted two years ago, is over 6 feet tall! (Btw… we aren’t supposed to plant trees, oh, well!) I laugh with Sean and tell him all of the news. I plant spring flowers and hope they survive. I know that he thinks I’m neurotic about keeping him clean. He always gave me a hard time about that; meanwhile, my Mom is reminding me that I missed a spot. This is our ritual. I hope that Sean forgives me for bypassing part of it this year. Glenn was pretty much out of it at the cemetery, so we each had our turn at being there for Sean, just as it always was.So, why did I start with Easter and Passover and then go on with this very long story? Sean came to me one Easter. Birth… a new life for him and me. We shared 28 Easters of candy and new clothes (oh, how he loved clothes!), many of them on or near his actual birthday. As for Passover, there is a very funny story that is so Sean. When Sean was about six or seven years old, we celebrated Passover at Glenn’s mother’s house. Neither Sean nor Bridget were touching their food. We later found out that Sean told his sister that it was lamb’s blood. Classic Sean. Many years later, the Angel of Death decided one day before Sean’s birthday not to pass over my first -born son. I am told that according to Jewish tradition, when you die close to your birthday, your work on earth is finished. I believe that Sean still had much to do and so much to offer. Sean was miraculously saved from so many scrapes that I told him once that he had a guardian angel taking care of him. I guess only the angels know the status of Sean’s story.In this time of rebirth, I ask that you reflect on the story of Sean and know that it is the story of too many sons and daughters who seek help and can’t find it, who want to be ‘normal’ and struggle with feeling ‘different.’ Too many mothers and fathers who have their children’s backs, but still can’t protect them from the hazards of care by professionals who are clueless about appropriate care, nor, at times, save them from the Angel of Death. At this time, unlike the resurrection of Easter or the protection of Passover, there are no miracles. The only vehicle of hope is that one individual who feels compassion for the compelling sadness of the story of Sean, the story of many. That one individual has the capacity to change the world and with it, add their touch of renewed hope to the splendor of spring.*I can now reveal these details about the rehab because the lawsuit I filed was summarily dismissed last year (means that a judge decided it didn’t have merit to go before a jury), and I have to assume that it's public record. I was never sure that we could defeat a jury's bias, but by filing, I wanted to document the state of treatment for addiction with a co-occurring illness, and have a chance to educate about addiction and bipolar disorder. After three years of fighting, with a lawyer who had the case for over 2 years quitting the month before a court filing was due; and, my subsequently acting as my own counsel, I was, at the end, able to retain a lawyer. A highly credentialed psychiatrist, head of a leading institution’s psychiatric and addiction facility, documented that they did not meet the standard of care. He was appalled at the lack of care and felt that Sean was too acute for the setting. He also wanted to do something about facilities such as this one that make claims that they cannot meet. In the end, nonetheless, the judge dismissed the case.With the statement of summary dismissal, the judge, in essence, stated that there was no guarantee that this wouldn’t have happened anyway. Never one to let go of a perceived injustice, I sent the judge a very long letter detailing why I thought his decision was wrong and one, which I considered to be a very biased one against addiction and mental illness. This level of 'care' with a medical diagnosis would be a slam dunk win in my experience with hospital malpractice cases.** Mania is the most dangerous of moods and can lead to risky behaviors, sometimes life-threatening. The standard of care is that you NEVER leave anyone alone when they are manic, let alone discharge them and instruct them to go it alone. If you are with someone who seems to be manic, please stay with him/her until you can get help. I knew nothing about BD and was following the instructions of a mental health professional. In the end, all they did was take away every last support Sean had, most significantly, his family. If I could have spoken to him, I have no doubt that he would be alive today.