The Sean Costello Memorial Fund Blog

It’s Never The Day

How honest do I want to get in these blogs and how much would anyone care to hear about my feelings?  In the best of all worlds, I would be able to reveal some information about bipolar disorder while putting a face to the loss of my son. I truly believe that the words that touch our hearts are the words that penetrate and change behavior, so I will write what I feel and hope they are meaningful.

It’s never the day; it’s the day after. That’s what I’ve discovered. It’s happened with each special day – I’m okay; I function and act somewhat normal as long as I’m busy and others are here. The next day, however, the sadness creeps in. You know how when you are anticipating a call, or a package, and you wait all day for it to come, and it never does? You feel suddenly let down and sullen. The joy of the expectation is erased and the day suddenly seems dull and lacking. That’s what it’s like for me. Take yesterday, for example. For the first time since Sean’s passing, I made Thanksgiving dinner for the family that we have here. Now, anyone who knows me, or has been a part of holidays, knows that I am driven to produce a feast, with more food than can be consumed. We have traditional recipes for Thanksgiving, unlike Christmas, which is determined by popular vote each year. There was always one person whom I looked to for approval for the results of two or three days of preparation, and it was Sean. Like his mother, Sean loved to eat and cook, but he was a food critic, or at least a critic of anything I made. Thumbs up or thumbs down would be meted out without hesitation, and I secretly awaited his judgment. It’s almost like everything I did was openly evaluated by him, and for some reason, above all others, I cherished his opinion. Was it because he was so discerning? Because he was blatantly honest? Or simply because I loved him so much that I wanted to please him? Probably, like all else in life, it was a combination of things, but I do know that I could attract Sean to sit and stay most often when food was involved. That’s probably the crux of it. He moved on his own when he was 19; traveled extensively; had tons of friends and became part of each girlfriend’s family – in other words, it was hard to get on his schedule, and living in the burbs which he disliked so, didn’t help.  But, when there was a feast and his sisters were going to be there, he came and stayed and ate and laughed and made us laugh.

So yesterday, I did what I’ve done since I was 21 years old: I invited every family member and any other person without family to a dinner that included more options than could be consumed. Everything is made from scratch; the table is decorated for the season; the grandchildren have turkey placemats I bought for their first holiday; and, I act as if everything is normal. It’s an act, but a convincing one. I’ve even seemed to convince myself.

This Thanksgiving was particularly hard. Our beloved dog Sam died last week. Bridget is in London planning her own celebration. My Mom has deteriorated so much in the past months, that she is like a child. She is in a wheelchair, needs her food cut for her, and needs help with her most personal needs. She lives in a state of panic, anxiety so severe that we received no fewer than 15 calls to determine exactly when we would pick her up, although she had gotten the same answer for days. I ended up burning the tops of two dishes while I lifted her in and out of her chair in the urgent plea for help. I couldn’t get her jacket off because her arms are unbending, and it’s almost impossible to navigate with her, as she is panicked that she will fall. Funny, though, her personality comes through all the while: as someone who loves small children, she beams when she talks to our grandchildren; always one to pay her debts, she insists on knowing how much she owes Glenn for stamps; and, always self-conscious about her appearance, she asks repeatedly if her hair “looks okay.” (I’ve always functioned as her hairdresser, as well.)

What does all this have to do with anything? It’s about depression and anxiety. My mother is from a generation where there weren’t diagnoses for moods. At the same time, smoking (which helps with anxiety) was commonplace, and obsessive cleaning was a legitimate way for a woman to spend her day. Now, with these coping mechanisms gone, the death of her husband of  over 50 years, the loss of her first born (and probably favorite) grandson, a daughter who has been her caretaker affected by the passing of her son, and the sadness of aging, she has legitimate reason to be depressed. She is unable to write because of shaking, can barely walk, and is unable to clean to busy her day away, and what is left is anxiety. Crippling anxiety.

Sean, too, was plagued with anxiety and panic attacks. As a child, it was social anxiety. As an adult, he had both social and performance anxiety, as well as recurrent panic attacks. I have only suffered something like panic after Sean passed away, and it is a horrible feeling that cannot be wished away.

I have since found out that the medications typically used for depression and anxiety make the symptoms of bipolar disorder worse. For depression and manic cycling, mood stabilizers have been fairly successful; however, for acute anxiety, there aren’t good medication options. The things used for acute anxiety (Xanax, Klonopin, etc) are addictive in nature, and since many people with bipolar disorder also have issues with addictions, these are not medications of choice. So what is available for people who respond poorly to antidepressants and who have severe anxiety?  From what I am told, there isn’t much out there, and much research to be done.

Of course, medications aren’t the only answer. Cognitive Behavioral Therapy, a therapeutic method whereby you train yourself in ways to counter thoughts which lead to escalating anxiety, etc. has proven to be extremely valuable. Nonetheless, there are the typical issues: cost, availability, and in the case, of Sean, scheduling.

One thing that is available on line is mood tracking (we have a link to a site on our web site resource page). It’s your own personal journal of daily moods, while documenting factors such as medication compliance, sleep, and specific events of the day. I have begun using this tool myself. I am interested to see if sleep affects my mood, as there are days that sleep doesn’t come early enough or last long enough. I’m also interested in the average mood that I’m in. If I record a day, and then the next, etc., I will be documenting exactly how I am feeling in the moment. If I were to try to recall it, I’m sure that I wouldn’t be very exact, and certainly wouldn’t be able to relate it to the time of year, amount of sleep, etc. I consider this to be an invaluable tool for both me and my providers when considering interventions. I highly recommend that anyone who seems to have recognized changes in moods that seem to be affecting their life, try this tool – it could prove to be enlightening.

As for my Mom, there is so much that could be said. She lost Sean who was the one grandchild who was forthcoming with affection – it was just his way- and who lived nearby. She then lives near the only child (me) who has served as her support person most of her life, and that person is barely able to make it through her own day, never mind support someone who is increasingly in need. Given the level of her anxiety and the limitations of movement, there is no way for her to busy herself to diminish the feelings of loss and hopelessness. Finally, there is a dirth of knowledgeable practitioners in the field of geriatric psychiatry, as there seems to be in child psychiatry. How we can know so little about the function of the organ that controls every aspect of our body, and how there is so little evidenced based care, is astonishing to me. Maybe once we get past the Puritanical belief (ones that my father espoused, by the way) that we can think ourselves out of our mental challenges, we will carve a future for those who suffer without hope of relief.

I think my Mom missed Sean yesterday. I know Glenn did – he could hardly come inside all day, and has been sleeping a lot. At the end of the dinner, my son-in-law talked about the elephant in the room, when he said: “This is a much smaller dinner than you usually have, isn’t it?” Sean and he used to laugh all during dinners, and I’m sure he missed his spirit as well. Nonetheless, the obvious remains largely unspoken to try to make the most of what is, and at times, the attempt is successful.

For me, it’s today. The day that I know that Sean was absent (and that Bridget will be absent more and more as she deepens her commitment to the UK), and I know that I won’t be able to tease him about what he’s missed, or brag about my culinary talents. Today, I also know that my Mom wished that we should never have to suffer as she is now. These are two ends of the spectrum: a life prematurely shortened and a life with seemingly diminishing purpose. I know if Sean were here, he would have made my Mom laugh, and she would have felt important. I feel if she weren’t such a prisoner of anxiety, I would have a Mom that I could lean on, instead of one I have to take care of (or maybe in addition to taking care of some of her needs). I just know that anxiety and depression are as lethal as any cancer, and can be more debilitating. You can face cancer and function if you have a healthy outlook; you can’t face the smallest of challenges if you are depressed or paralyzed with fear.

In my heart, did I give thanks anyway? Sure I did, for I have a lot to be thankful for. No one can take from me the memories of my son, or for that fact, my mother. Many people have come into my life because of Sean that I have become very fond of. I would be lying, however, if I said the hurt was less. It isn’t. There isn’t anyone who will take the place of Sean in my world. You may have know him as a musician, but you will find another’s whose music moves you. You may have known him as a lover, but you will find another to love and fill that void. You may have known him as a friend, but new friends will make you laugh and fill your days. There is never someone who will be the son or brother that Sean was to his family. It’s what keeps the hurt so much harder to hide and so personal. It’s what makes resentment for the way that others move on so hard to keep at bay. It’s what makes celebrations never the same, especially the day after when you wake up and realize that he’s never coming.

For the future of my Mom and others who are plagued with anxiety that defines their very existence, I pray for a better tomorrow and a crowded table with whom to give thanks.

All Saints Day

I can’t believe it’s November already. As my Dad told me my grandfather used to say : “As you get older, Christmases get closer and closer together.” Anyway, for us the time has flown, as October has been an unusually busy month. I’ve been asked by blog readers to give more information on what we are doing as an organization so, here goes:

We started the first weekend in October with a retreat attended by the majority of our board members. The first day was our second Annual Board Meeting, and the first one where members came from out of town. The meeting lasted about 4 hours and was extremely productive. As is true for virtual organizations, that is ones without a structure where all the members can meet and get to know each other, it was an opportunity for each of our board representatives to see what the others have been doing, and they’ve been doing a lot. In addition to our local members (Glenn, Allison, Melissa and me), Amy Pollick, Aileen Kenneson, Dar Lopez, and Sheri Johnson came from as far away as San Francisco. Michael Rothschild, Rosy Rosenblatt and Bridget were all available by conference call (s0me with more luck than others!).  Additionally, we had a guest, Tierah Chorba from Veritas Visioneering, who would be our strategic planning facilitator the following day. It took four hours of presentations just to cover the highlights of the last year: benefits, merchandising, public relations, research, grant proposals, fundraising, social networking, etc. The amount of time and energy that has been donated by this group is amazing. What struck me was that when I looked around the room, I saw faces that were brought to the Fund through Sean. Every member of the board were friends of Sean who approached me to ask how they could help. Sheri, our Scientific Advisor is the sole person who did not know Sean personally; however, it was through the efforts of Amy, a long time fan and friend of Sean’s that she was brought into the fold, and is the perfect fit for the role she has graciously accepted. Melissa even introduced her and Dar to Northside and Sean’s compatriates there for some great music after the meeting. (Dar tells me that Sean called Northside “the center of the universe.”  Musically, for him it was.) There is no better testament to the eclectic nature of Sean’s friends, nor reflection of his intelligence and heart than the representation on our board of directors. I couldn’t have been more impressed or proud of them and Sean. (Tierah told me that other boards would “die to have” what we have. I already knew that to be true!)

After that long evening, we hit the bricks early on Sunday for a very structured Strategic Planning meeting facilitated by Tierah. We were more than lucky to have her as our leader, as in addition to being skilled, she also came to us pro bono. It is her company’s mission to give so many hours of free service and we were one of the recipients of this generosity. Starting early in the morning, we worked until it was time for people to catch flights. This long day was only the start of the process; nonetheless, it served several purposes. First, we hammered out what we did/did not want to do or be, which is easier said than done. From that list, we were eventually able to narrow our mission and vision statements to one sentence each, a true improvement over my original. They have been revised and adopted to read as follows:

Agreed upon vision: There is accurate, timely diagnosis, effective treatment,  and social acceptance of bipolar disorder so that musicians achieve wellness while pursuing their creative aspiration.

Agreed upon mission: Uniquely focused on the needs of musicians with bipolar disorder, we support and conduct 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.

Hopefully, the clarity of these statements will foster better understanding of who we are and what we hope to do. Unfortunately, this is just the beginning of the work. What we need to do next is everything leading up to an implementation plan based on goals and strategies supported by our mission. This is what every successful company should do – match its actions to its intentions. I say unfortunately because we are an all volunteer organization, and each and every person on the board has commitments outside of us, primarily something that pays their bills. To date, we have been fortunate enough to receive their time and energies, but to be successful, we will need more, not merely more of the same.

As I personally struggle with the time and energy to fulfill a commitment to this mission, I am spurred on by the daily reminders I have of the serious consequences of this disease. If it were only Sean. If he had just been careless or the exception, but, unfortunately, he is the rule. What the medical community knows about bipolar disorder is growing, but still insufficient to offer effective treatments without multiple trials of expensive “cocktails” with serious side effects. It  still takes 8-10 years to diagnose, on the average, which means much longer for some, like Sean. Even though it is a highly genetic disorder, there is no test for it, and so little is known or told about family history that there isn’t even a good historical thread to put the pieces together to suggest a diagnosis. In other words, there is great merit to what we are trying to do.

I have had the honor these past two weeks of two celebrations in Sean’s honor. The first was the CD Release Celebration for the new Landslide CD, Sean’s Blues. Paul Linden agreed to orchestrate a format that was apparently somewhat unique (told you I know nothing about music!).  Paul, Matt Wauchope, Terrance Prather and Matt Sickles formed the nucleus of the band with guest guitarists playing Sean’s songs. I thought that sounded relatively simple, of course, I am used to watching Sean do almost anything with anyone :)  Paul told me he thought it was “precarious” but realized as soon as these talented young men (alas, no women) hit the stage, that the intent merged with the delivery. Each and every guest put their own touch on songs that Sean either composed or performed. Most of the guys were Atlanta based friends of Sean, but three of them came from as far away as New Jersey and Cincinnati to perform, and perform they all did. I had actually kind of dreaded the night. The thought of hearing Sean’s music at Northside, with his long time band members seemed too surreal to be enjoyable. That afternoon, I remembered something a very articulate person suggested to me: that I should celebrate rather than mourn Sean (this young man died about 2 weeks after this very special correspondence due to mental health complications). I decided that I was going to try to go with that mindset. Believe me when I tell you that the energy and passion and generosity that each of these musicians put into their performances gave me no room to mourn. Glenn and I are so lucky that we have the memory of Sean living and growing in such gifted and wonderful young people.

While I’m still recalling the night of the 24th, I have to mention how important the fans of Sean’s were to him, are to me, and are to those who are still performing for them.  In many ways, they remain unrecognized, the shadow behind the artist; however, without them, there would be no music, for when there is no audience, the music dies. In the case of the Blues, the fans are like family: loyal, passionate, and mostly anonymous in their support. There is no applause for them, no fan clubs, just the joy of the music. For our family and the Fund, the fans have been the ones to contribute their time and their emotional support in such generous and unheralded ways. Many of these people were strangers to me and have nothing to gain by association with us; yet, they give and they give of emotional, physical and financial support. I have become intrigued by them…. what makes a person who isn’t a musician so loyal to this music? I so envy those who can decipher riffs and identify artists by their style, and, of course, I am touched by those who were devoted to Sean. I know from him that without the core people who were there for him show after show, what he did would have been a lot less fulfilling and a lot less comfortable. They gave him the confidence to perform. The same is true for the Fund. Without the people who loved Sean’s music, there would be no passion for rectifying what caused him torment and led to his tragedy. These are the people who I have come to know as friends and on whom we depend to achieve our mission.

This past Thursday, Glenn and I represented the Fund in Chicago, as we presented the Sean Costello Rising Young Star Award. Blues Blast Magazine, an Illinois publication, initiated this award last year after asking for the family’s approval. The performances of the nominees and the ceremony were held at Buddy Guy’s Legends, a club Sean played in many times, as far back as 1998.  Watching the nominees perform while sitting in the audience, I have a new appreciation for what they do and how hard it is. Each one only had the opportunity to perform 2 songs. One woman was leaving that night to travel to Tupelo for a performance the next night. Another was driving home alone 800 miles the next day to New Jersey. All this for the chance to get noticed, to possibly get a booking agent or a record contract, or maybe just the applause. The place was packed, and the line an hour before the doors opened went down the block and around the corner. It’s a world that I look at with a different perspective these days. One young nominee was so obviously intoxicated when I left that they couldn’t stand up. Their performance was stellar, an energy that was uplifting and contagious, but I was saddened by their state. As one person recently wrote to me: once you know what the life of a musician is really like, you see them in a totally new light. The amount of adrenalin that went into those two songs isn’t dissipated when the set is done, and once they are finished, and their name isn’t called, what do they do for the rest of the night?  It’s an unnatural roller coaster of emotion that must take its toll. All the while, though, I was thinking how all that they do depends on the interest of the listener and the willingness to come, pay and applaud. It certainly is a unique and stressful way to make a living. It is the very nature of this business that calls for a unique approach to its complications.

There are days that I think that I could care less if another day comes, and I certainly don’t fear death as much as I may have. Mostly, though, I consider myself lucky to have Sean for a son. We are all mortal and our fates are unknown. The best we can hope for is that we leave this world having made a difference somehow, someway, and that, in the process, we were true to our calling and our friends. Sean certainly has met those criteria. I now consider it my obligation to build on his legacy and effect the change that I would have wished for Sean. I invite you to join me. I need all of the help I can get. Just like a musician, without support, our message will go unheard and our mission unrealized.

It’s November 1, thus the All Saints Day reference… one day after All Hallow’s Eve, the origin of the word Halloween. In the Catholic Church, today is a holy day of obligation, as the legacy of saints in the church is a strong one. A person is canonized a saint after they have been verified as having executed a miracle (or two). I’m hoping that someday we can effect the miracle of a new world for people who are bipolar. My favorite picture of Sean is on my MySpace page this month. He is dressed as the Tin Man, with his heart displayed on the outside of his chest. So revealing is this picture. Sean would wear his heart for all to see for his entire life, and always felt most secure in costume. I’m hoping that the boy that loved All Hallow’s Eve so much, from costume to candy is today enjoying the heavens with others, for his music and person certainly has spiritual qualities, and in his name, we hope to effect miracles for those who suffer as he did.