The Sean Costello Memorial Fund Blog

From Mother to Son

It was your birthday,

The day you were born

No words could be spoken

What could I say?

This bond couldn’t be broken

There just was no way

When you first smiled

I couldn’t speak

Amazed at your wonder

In your crib I would peek

I was your mother

Your passage to life

Yet, I did not know you

Like husband and wife

You took in your own world

Stayed close to mine

I watched you with wanting

What would you find?

Joy everlasting

Love and your way

Keeping an eye

While not blocking the way

I couldn’t tell you

All that would come

I just watched as you reached

Far from my womb

A mother cannot let go

How hard tho’ they try

They only pretend

While keeping an eye

Guiding and hoping

That one day you’ll see

The words kept and spoken

Were just meant to be

Light on the path to your future

The safe road ahead

There is no way to tell you

Now that you’re gone

How hard that I tried

To be the right one

The one who could love you

And let you be free

To live your life fully

But able to see

That I was put on this earth for you

For eternity

And now there is silence

Since you’ve gone away

No music can help me

No words can one say

For you are my baby

My love and my heart

And now you’ve been taken

How do I start?

To tell you I’m sorry

My words didn’t heal

The burden you carried

The way you did feel

I’m hoping the wind

Will find you for me

And tell you I miss you

And how hard I tried

There are no more words now

Just how hard I’ve cried.

High Anxiety

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.

What Are We Doing Now?

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…”

And so this is Christmas

This is the song that has been in my head all this holiday season. I can’t explain why, except that I didn’t know what to expect this year. Last year we went to London and avoided being home with the memories. This year brought new challenges, like what to do with Sean’s stocking and Christmas ornaments. We chose to stick with the positive and leave out any reminder that would only serve to make us sad. Anyway, John Lennon said exactly what I felt this year:

The lyrics are so simple, yet, as most of his lyrics were, so on point. What could one wish more for another than a year without fear or tears? And, in a way, Christmas marks the end of a year more than a religious holiday to many. It’s a way to celebrate no matter what happened the previous year. It’s observed no matter what – sometimes with less passion than others, but not celebrating doesn’t seem an option. It brings many of us together for the one time a year that we forgive and aren’t afraid to show love.

There were times this year that things seemed rather normal. Like a dream. Sean never came until Christmas Eve anyway, and in the last couple of years, not until midday, so everything could seem fine until then. There even was a year when he spent Christmas in Woodstock (I was so jealous!).  Never, though, a year without a call… a “Hi, Mama, Merry Christmas.” or a “Sorry, I’m late!”  Better was: “Sorry, I didn’t have time to wrap the presents.”  It never mattered, because they were always perfect for each person for whom they were intended.

I kept the day busy, though, so I wouldn’t notice the absence. We were blessed with the presence of Bridget, Allison and her wonderful family and two guests who had important places in Sean’s life. I cooked like crazy, thinking of what Sean would say about everything I made. Sausage and peppers are now Jeff’s favorites, and were always Sean’s, so he had his stamp on the meal. He would have loved the roast just as much and complained about eating too much. Of course, when the desserts arrived, his appetite would recover, and would recur in the middle of the night :)  I loved hearing his kitchen raids and always awoke when he came down the steps, even though he never knew.

I went to a grief counselor for almost a year after Sean passed. One thing that she said was that people would lose their patience with your grieving into the second year, and that’s why counseling serves a purpose. I didn’t know how true that could be. I feel like I’m just coming to terms with the fact that Sean is gone, and yet, I feel that I must act otherwise. I’m sure that people just want to move on, as I wish I could and that now, my sadness would only make them uncomfortable. So, in order to socialize as little as I do, I put on that happy face. Are my eyes the same? Does the smile seem genuine? I can’t tell because I am severed from myself to some extent. Like a paper doll, a hologram of myself trying to be productive, normal. I must be to be the responsible person I am supposed to be.

What are the gifts that I have received that brings my heart some joy? The many, reliable people from all parts of the world who have become my friends, if only on Facebook. They let me know that Sean is alive in their hearts as well. It’s the people who buy his CDs and t-shirts from our website and then tell me how honored they are to talk to Sean’s Mom. Can you believe that? That they would be impressed to talk to ME?  It’s because I am the Mom of a wonderful son who touched the world with his talent and huge heart.

What I do know is that this loss is not suffered by me alone. Too many mothers have written to me about their loss and I know their grief is no less for the fame their sons/daughters may not have enjoyed. What I want to do for them is develop a page on our website that lists the names of every person who has been lost to their family from mental illness or addiction (which in my mind, are one and the same, for who would want to be addicted to a substance and let it ruin lives and relationships?).  I want to remember all of them, for each of them is important to our quest and my resolve. I cannot do this on my energy alone, albeit my idea originally. I just am not strong enough. Maybe one day my grief will turn to anger or a drive that will propel me through the challenges of what I have started. I can only think of Sean and how he struggled and yet fought and gave us such wonderful gifts.

We, who knew him, all miss him. We will never be the same. Not me, not Glenn, not Bridget, not Allison, not his Dad. We can only hope that we are in some way, better. I know that we are better for loving him and having been loved by him.

John Lennon wrote such a beautiful and poignant poem, really. The thought of no more war is something that I have fervently wished for since I was a kid. I refused to even read about Vietnam and every successive foolish attempt of mankind to hurt his own, mostly under the guise of a love for God… like I could just wish war away.  (I wouldn’t even buy him a toy gun!)  I know that Sean was a pacifist: he couldn’t even hold a grudge :)

I am compelled, however, to perpetuate a war of my own….. against prejudice, ignorance, and neglect of all of those who suffer with mental illness and the families who suffer with them. In this war, however, there will be no prisoners, no loss of life. On the contrary, we will be free to receive the healthcare that all others do; we will be offered the benefit of research that others are; and we will live long, healthy, productive lives so that we can share our own special gifts with the world. But, I do need an army to succeed.

Even though today seems to be an especially sad one for me, I am hoping that each of you who reads this has a wonderful, prosperous and healthy new year.

You can give me one late Christmas gift: always remember Sean and pass his music on to all whom you know, and in that passing, let them know that he was a beautiful, talented, loved and loving person who struggled with a disease that needs attention. Whatever they can do to help is their own personal gift for Sean.

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.

Rainy Days and Sundays Always Get Me Down

It is Sunday, and it is raining, but I can’t blame my mood on those two factors; my melancholy has been building for months. I did start a habit of going to Mass on Sunday where we held Sean’s funeral, as I felt for awhile that his spirit was there, and I knew the spirit of his friends was still present. I would then go to the cemetery just to say hello. It was okay for a time, but soon I began to dread Sundays. The ritual didn’t seem genuine as I was questioning my beliefs. The setting seemed almost maudlin. Sundays became a day of questions with no answers and conversations with only one participant.

I think that I have been vocal about wishing that Sean would visit me in some way, or that I could feel his presence. There have been times that it seemed as though he might have been trying to let me know he was around. Several times, at key moments when we might have been visiting with one of his friends and talking about him, our door bell has rung with no one there. It has only happened on these occasions. Coincidence? Wishful thinking? There is no way to know. For the most part, I only feel an emptiness, a hole that refuses to be filled by the activities of life. This ongoing sense of loss and longing is becoming harder and harder to ignore.

Kubler and Ross are well known chroniclers of the stages of grief. I think the first is supposed to be denial. I don’t think I ever denied that Sean died. I did deny that it would have to hurt me to the point that it would affect my life. I was wrong. I no longer deny that I am a different person because he is gone. The next stage I think is supposed to be anger. I haven’t really been angry. I spent so much of my life being angry that I long ago decided that it serves no purpose. Whom should I be angry at? Sean? How could I be angry at him when I know he tried with his heart and soul to be the best he could be?  At the person who sold him what caused his death, or the people who hurt him so badly that he sobbed with confusion and betrayal? I can only think that they are so badly damaged that they were not responsible for their actions. And would my anger bring Sean back? If I thought it would, maybe I would be willing to go there, but to me, anger is just a waste of energy and I have none left to waste. Besides, Sean never stayed angry, and this is supposed to be about him.

Somewhere in the mix is the grief and sadness that comes with the loss of a person that was so important to you that your life will never be the same without them. I have lost many people in my life, but most of them have been in a natural order – grandparents, parent. I have been lucky to have been spared friends and family who have not lived a long and productive life. That is, until Sean. My daughter tells me that losing a child or sibling unexpectedly has been determined to lead to post traumatic stress syndrome. There is no doubt that I live in a world that seems surreal. First there is the shock of the news, then there is the necessity of handling arrangements, and then the sequelae of trying to grasp the concept of something that makes no logical sense. It’s disorienting. Disabling.

At some point, you are supposed to reach acceptance. Not just the realization that the person is gone. I think that comes fairly quickly, at least it did for me. Acceptance is supposed to be like letting go of the questions of why and being at peace with what is.

I am not there. My head may be acting like it is, but my heart and body are not in sync.

I’ve been thinking a lot about life now seeming more like the aftermath of a dream. You know how when you first wake up from a dream and you can’t tell what’s real and what isn’t?  Like for a moment, that the dream was real and you are just momentarily disoriented. That’s how life is everyday now. Was life with Sean just a dream? Was he real? Or, is this aftermath just a bad nightmare that I will awake from one day?

My mother-in-law died at age 85 or so. She was one of 16 kids and about fourth from the youngest. She was, however, the last to die. When her younger brother and sister died, she stated that it should have been her. She didn’t want to live anymore; she had seen too many friends and family die. She was ready to leave a world, that despite the health of her only son and grandchildren and great grandchildren, held too much sadness for her. Interestingly, before she died, she developed dementia. Once she did, the only brother that she openly mourned was a brother that was killed in the Battle of the Bulge, probably in his late teens, early twenties. Of 15 siblings, he was the one she felt the lingering pain of loss. It seems consistent with the diagnosis of post traumatic stress.

This past summer, the deaths of 4 young men have come to my attention. Three of them were (accidental) overdoses and were reported to be related to bipolar disorder. One was a suicide due to depression and chronic mental illness. When I heard of the one young man, whose family I know, I sobbed uncontrollably. I knew that his Mother and sister were going to face a pain for which there is no medicine; a sadness for which there is no cure. I wanted so badly to help them, to go to them and comfort them, but what would I say?  His Mom asked me when the hurting would stop. Can I tell her that I don’t know if it will stop, never mind when?

What is the purpose of this blog? My intention is to let the people who are suffering from depression and thinking that they are not important to their family or friends to know that is the furthest thing from the truth. You are so important, you cannot be replaced in our hearts or minds. Our world will not be the same without you. We need you as much as you need us. It is your brain that is malfunctioning, giving you mis-signals about how much you are loved. If you could put yourself in the place of Jimmy Stewart in Its A Wonderful LIfe you would realize how necessary you are. A little while after Sean passed was the only time I believe he spoke to me (sure it could have been my imagination, but the voice in my head was his), and he  said: “Mom, I’m sorry. I didn’t mean to make everyone so sad.”

There are days when I think that I’m the wrong person to be doing what I have attempted to do with the Fund. I’m just not operating at a level that I feel is acceptable. Then, I hear of someone who has lost their life due to the suffering of mental illness, and I think, how can I not?

This is not optional. There are those who may not believe in bipolar disorder and feel that Sean may not approve of what has been done in his name. I believe in bipolar disorder because I lived with a son who suffered with anxiety and depression for years that was confusing to him, with long periods of no sleep. He hid his confusion and frustration from most of the world to be seen as normal among them. He did not hide his sadness from me. Would he approve of what I am doing in his name?  I would never betray Sean in a gratuitous way that might demean or embarrass him, but I know that he loved his friends and fellow musicians. He was the first to help a friend in need and often brought those friends home for us to help in their care. I also know that he trusted me with his best interest. What we are able to accomplish with his legacy remains to be seen, but Sean never gave up. No matter what, and I’m trying to act with the generosity of spirit that was Sean’s. Believe me, every day I am more impressed with what he was able to accomplish in his life despite his challenges. He is my muse when I feel like I can’t finish what I’ve started.

Some tell me that Sean has come to them in dreams where he was smiling. They say it was so real, it was mood altering for them. I am still waiting for that dream. In the meantime, I am awakened every day with the reality of the lives of wonderful, sensitive young men and women (mostly men, it seems) and their pain. They are still alive and they need help, and their families need them. I can be somewhat comforting to people who have suffered the loss of a child, because I won’t dismiss their pain. I can’t relieve their pain, no one can. Better still would be if the loss of Sean led me to a path where someone else’s mother gets to see her son age and grow as an adult. This does not have to be a dream. With your help and insight it can be another family’s reality.

[I would like your feedback. I must admit that I write these blogs for very personal reasons, but hope that they resonate in a helpful way. I would like to know your thoughts about the Fund and what you would like to hear from me.]

An orchid has survived and my birthday comes anyway

I have written a lot about Sean and how wonderful he was as a person and son. All of that is true. I have also chosen to advertise that he was diagnosed with bipolar disorder, type II, which is primarily depressive with hypomanic episodes. What does that mean? I have received some odd responses from people who didn’t know Sean. Somehow, I get the impression that people thought that he acted crazy, “mentally ill.” When you talk about a child being a diabetic, since the presentation and extent of that diabetes may vary from person to person, there is no perception of that person as acting or being one way. When you say that your son was bipolar, there is a stereotype that people seem to apply. If you knew Sean, you wouldn’t be able to consider him “mentally ill” in the stereotypical sense. In fact, most people didn’t know that Sean had emotional challenges.

People who suffer from this disorder and their families know how difficult and exhausting it is, but it is largely a private battle. Most of the time, people act normal. Even in children, they are able to keep it together to avoid being “different” and then decompress at home, typically with their parents. In adults, it would be their partners who might get the brunt of their moods. I read once that a good description of bipolar disorder is getting stuck in periods of depression or anxiety. Everyone has episodes of depression, it’s part of the human experience. Most of us feel anxious from time to time: exams, new job, etc. When a person has bipolar disorder, the moods may  come more frequently and last longer, often without apparent provocation. It’s like a switch gets turned on that can’t get turned off. As the mind processes the anxiety, sleep becomes problematic and sleep deprivation just compounds the problems. In a way, it is the brain version of a blood sugar problem. Why do some people’s blood sugar stay elevated or plummet?  We know that it’s insulin; yet, there are some people who do not respond to diet or medications and progress to complications of the disease. Our brain functions just like everything else in our body – chemically. There are pathways that require enzymes, proteins, hormones, etc for the mechanism that controls moods to work properly.  While we might know what triggers hyperglycemia (high blood sugar), we are learning what triggers a manic episode.  We have a sense of what causes episodic depression, like a death in the family or chronic illness, we don’t know how depression functions when someone suffers from mixed mood states. In fact, medications that work for depression often make the person who suffers with bipolar disorder worse.

What I’m trying to say is that people who have this diagnosis look just like you and me most of the time. They are bright, engaging, appropriate in most of their interactions (of course, if someone is in an acute manic or depressive state, this would not be true).  It is because they act normally in so many ways that the disorder goes undiagnosed for 8-10 years on the average. During that time, since the sufferer wants to be “normal” and there is no one telling them what is going on, they learn to self-medicate. If I’m tired, I drink coffee to get going. If someone is chronically anxious, and there is no intervention, they might drink to calm down or try to sleep. This cycle of anxiety and depression calls for alternate methods to control the symptoms to survive. The result is obvious. Now the person who is bipolar, but has not been diagnosed or given appropriate medical intervention, starts to depend on these substances which bring their own series of complications.

For people who are living with these unexplainable mood variations, they know the toll they take on themselves and their loved ones. Like the rest of us, we reveal ourselves to those we trust. Given that they, too, are unprepared to handle what they don’t understand, the situation often deteriorates, causing divorces, breakups, family rifts, etc., all the while making the person more and more depressed and hopeless.

I knew that Sean was different emotionally from when he was a toddler. He had two moods: funny and engaging, or frustrated. He absorbed every word that was said and responded to music from when he was a baby (Sesame Street Fever being a favorite!).  He was bright, quick, adorable, funny and so well loved, and yet, he was so shy that it was debilitating.

At age 3, he was to go to nursery school. He would only be comfortable if he were in “costume” like a cowboy outfit, GI Joe, etc. Nothing was odd looking about it; he was 3 after all. He got sick a lot and missed many days of school, something that continued throughout his lifetime. Because he was in the gifted program and a favorite of teachers and students alike (he was always chosen to play some funny part in plays, etc.) it never occurred to me that he was regrouping… that he needed that time off to be able to function in front of others. If you were to ask his teachers or classmates to describe Sean, they would say: quiet, adorable, smart, creative, polite and well liked. I don’t know what Sean would have said about himself, except that he often told me he felt like he didn’t fit in.

Because I divorced Sean’s Dad when he was about 5, Sean and I had a special closeness. (Actually, we always did have kind of a psychic connection.)  He would tell me his feelings openly and I tried everything that I could to get him to feel comfortable socializing. I wanted to take him to a counselor when he was about 6 or so, but was advised not to… it would make him feel responsible for the divorce. (Funny, though, I hear Sean’s biggest disappointment about the divorce is that we weren’t on Divorce Court!! So Sean, to look for something dramatic, while seeming insulated from the emotion. Or, maybe we just did a good job convincing him that it had nothing to do with him….)

By middle school, Sean had adopted the guitar as his sidekick and a way to gain access to acceptance.  This was in his mind, as he was already well liked and in every way visible, a normal kid. I sensed something totally different. Sean just didn’t feel challenged, or that he fit in. There are so many stories of this, most of them humorous. Then around age 12, he befriended boys who liked to get into trouble, and he did with them. Nothing major according to counselors, just normal boy stuff. I didn’t see it that way and had him go to counselors, something that continued throughout his life. The thing is, no one recognized a problem. Maybe he was depressed. Maybe he had ADD (he wasn’t hyperactive, so ADHD didn’t apply). Mostly, they told me he was smart, funny, self-aware and normal. No diagnosis, no intervention, no prevention of what was to evolve.

Now we have a 15 year old guitar prodigy singing and writing songs about the blues, and acting as a band leader to people much older than he. Ask any band member, and there was no question who was in charge. His stepdad traveled with him to oversee and protect him, but how do you resolve the emotions of a 15 year old with the intellect that was required to do what he did? Who were his friends? What were they doing on off times? Where did he fit in?

I demanded that he finish school and try to keep as normal a life for his age as possible. Given that Johnny Lang was allowed to quit school, I wasn’t very popular with Sean. In fact he turned 18 in April, 6 weeks before high school graduation, and told me he was dropping out of school because it was “the nobler thing to do.”  My response was “it was the stupid thing to do” and I forced him to continue, albeit through home school. If you haven’t figured it out yet, life with Sean was amazingly interesting and unbelievably exhausting, and we were very honest about our difference of opinions. He was reading Jack Kerouac and I was taught by nuns and a catechism, as well as a German father. There is no clear path for a person so gifted and concomitantly so variable in self-esteem, energy, vision, feeling of belonging, etc. I just fought to keep him grounded. So many things about the life of a musician and fame are subjective, fleeting and false.

The reason why this disease is so dangerous is because it is insidious. You cannot look at someone who is bipolar (unless they are an extreme case and/or in an acute manic state) and recognize them.  We all experience ups and downs, and most of them we keep to ourselves or share only with those we love. They are no different. In Sean’s case, as in most I assume, he had to keep his anxiety and depressions to himself in order to perform. I know he had panic attacks before every performance. Who would have known once he got on that stage what it took from him to get there? I did, and that knowledge interferes to this day with my being able to enjoy the beauty of his talent. It also caused friction between us, as I would try to get him help just one more time in just one more way.  The promises that mental health professionals give and don’t keep, the claims that they make for their ability to help, when they fail, just worsen the depression and erode hope for family and their loved one.

Sean was funny, hysterically so, entertaining, loving, generous, kind, talented, handsome, empathetic, wise; but, he was also angry, short-tempered, self-deprecating, easily agitated, self-involved, unsure, anxious, sleep deprived, disappointed. In other words, he was just like the rest of us, the difference being the magnitude of these feelings and the length and breadth of their effects. Nonetheless, let us not let anyone call someone with bipolar disorder “crazy” anymore than a diabetic would want to be called lazy or fat or ignorant. Sean needed a correct diagnosis, education about the effects of his diagnosis, ways to retrain his thought processes, effective ways to help sleep issues, medications and/or other interventions to reduce anxiety and relieve depression. This is what this Fund in Sean’s name is about. It’s about reducing the time that it takes to diagnose by teaching families, friends, teachers, counselors, doctors, how to recognize bipolar disorder before complications of self-medication. It’s about giving the sufferer the knowledge to know what is real and what is distorted thinking because of a chemical imbalance. It’s about giving every Mom who knows the suffering no one else can see the tools to advocate for the children they adore. It’s about removing the stigma of the diagnosis so that people don’t hide in shame, fearing that people will think they are crazy.

There are some key things that I would want everyone to know:

Bipolar Disorder is more genetically linked than any other psychiatric disorder. What does this mean? It means that we need to know the mental health history of our family tree. Who has been known to be depressed? (I believe that alcoholism is a form of depression.) Committed or tried to commit suicide? Have some undiagnosed mental health disorder? Been diagnosed as being bipolar? This is such a huge key to unlocking the correct diagnosis.

Bipolar disorder has the highest rate of attempted and successful suicide of all psychiatric disorders. (It is said that people don’t want to die. They just want rest. I know that was true of Sean. How so very sad is that?)  Given that suicide is one of the leading causes of death in ages 14-21 and bipolar disorder’s onset is typically in adolescence, catching it early and applying appropriate interventions might be saving many of our youth, many of which are our best and brightest.

There is nothing that will erase the sadness of the loss of a child, regardless of age or reason. It just is a violation of the laws of nature. Old should die before young. There is nothing I would not have done for Sean, and in my capacity, did for Sean. I would, if I could, switch places with him today. There is no joy that doesn’t come attached with a feeling of guilt or loss; no occasion that isn’t bittersweet. The world is never the same. There is no person who was more loved and cherished than our only son, and his sisters’ only brother. If you knew him, you know the hole is immeasurable and eternal.

I have exposed Sean’s challenges, because the world chooses to concentrate on a person’s demons without the context of their life and soul. I also push through the days that remain for me because I have other children whom I believe need to live the remainder of their life with some sense of the world being an okay place. If my view has changed, I at least had 50+ years of hope and optimism. I also know that Sean loved. Anyone who knew him knows that he loved with a passion and with a naivete that spread that joy and love to everyone that he encountered. I believe he would want two things from me if he could ask: (1) that I try to spread his music. It was his life, his meaning, his gift to us. ; and (2) he would want me to help his friends. He didn’t like the medical community and often used me to gain entrance and the support he was afraid they wouldn’t give him. He was embarrassed and awkward and just couldn’t understand why he felt the way he did. His perception was that the medical community would blow him off because he was a musician, didn’t make a ton of money and was relatively young. I don’t know how much of that is true, but if he believed it, it was true to him.  He fought with me, hugged me, pushed me away, helped me, all of those things that kids do to their moms, but he always asked me to help him when he felt like he needed help from the world of doctors and counselors. I think he would want me to help others, and now that I know more than I knew before, and am disappointed and, in fact, angry at their failing him, I cannot escape from helping others in his name.

If I could tell someone who suffered as Sean did anything, it would be to learn as much about your challenges as you can and find the best people possible to help. You are not crazy. You are not hopeless. You are loved, I am sure, by so many people. Accept their love and help. There is hope. I am hoping, that through your help and the help of others who contribute to this cause, that the hope will be magnified.

Wednesday is my birthday. Sean always said that I turned everything into an extravaganza. I know that I did use every chance I could to celebrate something, as celebrations are too few and far between in our culture. I guess I also sensed that we never know if we will have another opportunity to celebrate. I am so glad that I annoyed him with my extravaganzas. I may be poorer now than some, but look what would have happened if I put it all into an IRA anyway!!  At least I have the memories, and when I’m old and probably broke, I will still be able to remember that I helped Sean and Bridget live their dreams… that was my job. Unfortunately, I’m not really up for extravaganzas and hope for a quiet birthday that passes quickly, as I will be waiting for that one phone call.

When I despair of this life, as I don’t understand much of it anymore, I see this orchid that friends of Sean’s gave to me the day he passed. I am horrible with plants!!  My ex says that I have a black thumb :)  and orchids, well forget it!  After it bloomed, nothing was left for almost a year but a stick. I was so tempted to throw it out, but just couldn’t (way too sentimental). The other day, it bloomed three gorgeous flowers!! It’s hardly believable, especially since it’s me who is its caretaker.  I have chosen to view this as a sign of life’s cycles and that there is rebirth. So, on my birthday, when I blow out my candles, I will be wishing that Sean is in a place where everyone loves his music, where he is playing with Donnie and Nappy and smiling from ear to ear, and where he is at peace with himself.  Most of all, I want him to know that I love him, always have, am proud of him, always was, and my only hope is that I will be able to see him again, and maybe, just maybe, if he would come to me in a dream for my birthday.  If I can grow an orchid, anything is possible……….

“A kind heart is a fountain of gladness making everything in its vicinity freshen into smiles.” Washington Irving

One year has passed. It seems impossible that so many days have gone by and I have not heard Sean’s voice. Of course, he speaks to me at times, at least I hear what he would have been saying to me: “Mom, don’t go there.”  “Quit while you’re ahead.” “Hi, Mama, Happy Mother’s Day. I’m on the road and broke and you told me not to get you anything… .  I love you.” (the only present I ever wanted.) Nonetheless, the joy of Sean was in the banter. The sage, salient advice. The sarcastic retort. The connection with a soul so smart, so deep, so irreverent. No one could make me as angry (vice versa, for sure!) or laugh so hard. He was at once exhilarating  and frustrating; ridiculous and insightful, brash and loving… a wonderful, interesting contradiction.

Someone once told me: “See an exhausted parent, see a gifted child.” Sean exhausted me at times, from birth. He didn’t sleep very well at night; napped great during the day – a prelude perhaps to his adult lifestyle. He remembered everything he heard and forgot everything he owned. He excelled academically and hated going to school. He had a lousy immune system and resisted exercise. He loved to perform and was too shy to talk. Sought my help and resented my suggestions. In other words, he was wonderfully complex; life with Sean was never dull. Whether it was a Michael Jackson look alike sliding into a busy kitchen for a command performance, or a sedate young man plucking an acoustic guitar, all the while melting my heart, Sean could always wrangle a smile out of me. This is what I miss, the interaction that kept me on my toes, taught me things I never even dreamed of and made me smile despite myself, as only sons can do!

Sean moved out when he was just shy of 19, with a heart full of love for a young talented blues singer and an anticipation of the career he longed for. He was as naive as a nineteen year old is supposed to be. Things didn’t work out as he planned and he came home to regroup. He told me he just wanted to be normal and have friends.Sean experienced a lot of bad breaks and broken promises, things no one could foresee or control. Things that might have soured a lesser person. Sean, however, rebounded each time with that kind heart and a belief in the persons to whom he trusted his heart, which was almost everyone he met who would listen to his music.

I saw things in Sean that many others didn’t, simply because I knew him as no one else did. We were very close, as children of divorce often are. That isn’t to say that we didn’t have our differences. I am told many a phone was thrown after a phone call from me!
But, make no mistake, when Sean needed help he came home. We took salsa dancing lessons together from his talented girlfriend.  We spoke almost everyday when he was on the road, even in Europe. He told me many things his sister told me Moms shouldn’t know. (Trust me, I didn’t always want to know!)  My job was to be Sean’s emotional and moral barometer. He came to me when he wanted to be told the right thing to do, at least from my vantage point. He knew that I was incapable of doing anything but that. Catholic school taught me that keeping quiet if there is something wrong, is being complicit with the wrong. Sean and I didn’t always agree, but we respected the other’s right to disagree… at least a day or two later :)  With Sean, there was never a grudge. His heart was too big and incapable of carrying a grudge toward anyone.

“A kind heart is a fountain of gladness making everything in its vicinity freshen into smiles.”
Washington Irving

My greatest regret as Sean’s Mom is that I was so busy raising kids, working, keeping a house and family that I didn’t have time to savor his gifts. I thought there would be time. Because I was aware of his challenges, I often was distracted by worry or concern. Not to say that I didn’t adore Sean; I loved him more than words could say and defended his right to be different. My brother, myself and Sean’s sister are all Ivy League graduates. Sean didn’t want to go to college and I never minded that he didn’t. He had a gift that I didn’t have and an ability to accomplish something that school could never offer him the opportunity to do.  I told him to find what he loved to do and try to get paid to do it. My brother has told me that Sean is the only person he knew that did what he loved. And he so did love. Music, people, his family, friends. Paraphrasing what his good friend, Eddie Tigner, said at his benefit: It seemed that Sean never met a stranger.

These past two months have been much harder than I could have imagined. I thought that I had cried so much and suffered through so much emotional pain that I couldn’t possibly hurt as was predicted. I made it through Sean’s anniversary and birthday okay, and crashed the following weekend. I’m sort of fine when I have to put a face on for others. Sean would be embarrassed if I made any kind of scene. I try my best to keep from embarrassing him, or making this about me, if not for him, for his sisters.

Then, things fell apart. We got a puppy the weekend after his birthday. I think Glenn really wanted something that would distract us from the losses, and Bridget fell in love with a three month old mutt with the cutest face. Well, that mutt broke through my defenses. All I could think of was: how can I love anything without feeling the hurt of losing Sean? If I keep myself in neutral then I at least will survive. That’s all I was aiming for: surviving. Loving, feeling were out of the question. I cried for an entire weekend and almost took the dog back. If I weren’t so damn responsible, I think I would have.

The puppy, whom we’ve named Coop, in honor of Sean’s dear friend, Donnie McCormick and their band “Coop Da Ville” (that name makes me laugh: I can just hear Sean saying DA Ville), managed to capture my heart the first time he licked my face as I was crying. Sean could never stand me to be upset, sick or crying. Maybe he’s a gift from Sean; a reason to get out of bed and something to force me to care.

Last week, Glenn and I went to Memphis for the Blues Music Awards, where Sean was nominated in two categories (making three total). I had something prepared to say, sort of. I never memorize anything; I try to speak from my heart in the moment. Nonetheless, I told Glenn that I didn’t think he would win, not because he didn’t deserve it (so many people predicted he would), but because of how the voting usually goes to the old icons. In any case, when his name wasn’t announced as winner, I was relieved. Not because I didn’t have to give a speech; I’m always prepared to perform :)  I called Bridget in London in the middle of the night (she was waiting with the phone at the bedside) and told her I was glad. That moment, winning in his category, would have been so important to Sean, it should only have been his. If he had missed that, my heart would have been broken in so many more pieces.

Almost irrationally, I came away from Memphis happier than I have been in awhile and the reason is clear to me. Sean didn’t get an award for his talent, but I heard story after story from fans, musicians, and icons of the blues and the music business – everyone I met who knew Sean, and there were many – about how wonderful he was. One man was so excited to see me. He wanted to tell me how much he loved Sean. He told me he had 3 sons, and he would have been happy to call Sean one of them.  A better compliment I could not have received.

Many people have heard me say that I tried to stay out of Sean’s career. I did. Not because I wasn’t proud, and certainly not because I didn’t love his music. He is my favorite musician of all time. I can’t listen without dancing and smiling (when I’m not crying now, of course). I kept out of that realm to try to keep Sean balanced. In my life I have seen how unfair and political life can be. So many things are beyond our control and many things are subjective and superficial. What lasts and is in our control is our character. I told him that I would be proud if he were a good person more than a famous musician. I came home so proud. Sean kept his heart open and his soul intact and left the imprint on this world of a man who was successful and kind. Hardly a soul can talk about Sean without laughing as he made everything in his “vicinity freshen into smiles.”

Sean taught me so much in his lifetime. I wish I had slowed down to learn even more from him.  I miss his intelligence, his wit and his curiosity that extended way beyond music. I miss that I might have seen him grow and, as I relaxed in the knowledge that he was okay, I could have learned so much from him. This past month I learned that even when you are close to someone, you don’t always know all there is to know. The reflection of Sean in so many people’s faces this past year has taught me that Sean had his priorities set in the right place. His kind soul lives on in the memories of those he touched and is helping now to teach me to try to be as kind as he was and he shares his love every time someone connects with me because of him. I am so lucky to be his mother.

There is nothing more important to me than to know that Sean was loved. You who have communicated how much you loved him to me know who you are. Sean is smiling knowing that you let me know he didn’t disappoint me. Not in Memphis. Not ever.

The 1st Annual Sean Costello Memorial Fund Benefit Concert – Event Summary

I’m guessing that Sean was saying “There will be a snowstorm in Atlanta  in March before my Mom could pull off a benefit with Lurrie Bell, The Wood Brothers, King Johnson, Felix and the Cats with Jon Liebman and Soul Shakers.” Either that, or “If I can’t play with Lurrie Bell, no one can.” I am told by a friend of Sean’s and mine that Bob Dylan once said that weather was the great equalizer. Whatever the reason, fate deemed that Atlanta would have the first snowfall of the year the day of our concert and today it’s in the 70′s!

As it turned out, what looked like blizzard conditions, faded to dry roads with no accumulation. It snowed just long enough to scare some who would have come enough to stay in their homes…at least some of them. For the people who flew in from Chicago, they were wondering what the fuss was all about. Snow or not, the concert proved to be a great success with representatives from Chicago, Las Vegas, New York, France, Florida, Virginia, North Carolina, Indiana and Michigan…..

We apparently had planned the organization to the point where our committee and volunteers often seem bored, while people commented on the professionalism of the entire event. Things went smoothly in every area from ticketing to food to merchandise. Most importantly to the attendees, the concert itself went without a hitch and offered phenomenal music while a slideshow of Sean was running on screens on both sides of the stage. (I must admit that the slide show prevented me from enjoying too much of the entertainment, but I thought that it was a beautiful way to incorporate Sean into the program.).

Die hard fans of Sean and the bands came in numbers great enough to tell us that there is an audience for our cause. Several of our sponsors didn’t venture out in the weather, and we know many others who sent messages asking us if we intended to cancel. In all, I estimate about 150 people bought tickets, with the remainder present being staff, volunteers and musicians.

There are some wonderful and heartwarming stories about people’s determination to get to us. Chris Wood lives in Woodstock and was refused entry onto his plane because of his stand up bass. He drove to Newark (about a 2 hour drive), paid for the bass’ passage and arrived without a word of complaint. Lurrie Bell proved to be the nicest man with an obviously generous heart. He suffered through 4 plane changes and a 2 hour delay, but managed to arrive in time for his performance, and what a performance it was!  Such a quiet man to turn into a force of nature on stage. I hope Sean was watching.

I cannot say enough about the quality of the music and the demeanor of the musicians. Sean would have been so honored, and I certainly was honored in his behalf. I was moved to tears to feel so much love for him and support for our cause. Lisa Love was an awesome emcee with the best job ever: introducing the Soul Shakers, Felix and the Cats with Jon Liebman, King Johnson, The Wood Brothers and Lurrie Bell. I would not pretend to be qualified to critique any music, but a tone deaf attendee wouldn’t have words to express the unbelievable talent that graced the stage in Sean’s honor.

Our goals were to break even while getting the word out about the seriousness of bipolar disorder and the work of our cause, all the time keeping Sean in our thoughts as our catalyst. We more than met what we sent out to do. For example, there was a lovely older couple from Savannah who told me that they happened upon Sean by accident one day. They were ambling around the City Market when they heard some phenomenal music that happened to be coming from Sean. From that point on, they followed him whenever they could. This night they came to celebrate Sean’s music and to support the Fund. They have a very close relative who struggles with bipolar disorder and they know first hand its devastation on their loved one and the entire family.

As I said on Sunday, none of this would have been possible without the hard work of our fundraising committee. I will list them alphabetically, as each of them provided one part of the perfect combination that led to Sunday’s success: Lauren Arno, Melissa Bauer, Patti Beaman, Bridget Costello, Bartley Cross, Allison Dellamaggiora, Jon Liebman, Donald Schellhaas, Kelli Stripling, Megan Tackett, Manda Pullen Turetsky, and Lindsey Warren. In addition to these incredible people, there are many others who deserve our thanks for their generosity, including: Reggie Colbert and North Atlanta High, Jeff Bakos, Tom Dausner and Vincent Tseng, Matt Harper of Fat Matt’s Rib Shack, Tom Hyslop, Lisa Love, Iain Martin and Andy Whitaker.

The weather may have affected the number of people who were able to attend, but it certainly had no effect on the generosity and enthusiasm of those who did brave the weather. Our silent auction was a phenomenal success. Manda organized it as if she worked for Sotheby’s! Stephen Talkovich’s beautiful hand crafted guitar was purchased by Gary Leiffer; the phenomenal painting by Eileen D’esterno was bought by our board member, Richard Bolton, and gifted to me!  There were tickets to Levon Helm’s Midnight Ramble as well as DVDs and CDs, beautifully framed and matted prints of Sean by Keith Taylor, prints of Sean from 1998 donated by Evan Waller and more recent prints from Jerry Novick. Other auction donors included: Acupuncture Works, AnyHaul.com, Blind Willie’s, Carol’s Linens of Macon, Dan Seevers, Delta Groove, Donald Schellhaas and Ronda Wenger, Eby Designs, Landslide Records and Natural Body Spa and Shop. The charity of the people who donated and purchased these treasures is beyond gracious.

Despite the weather, we were able to cover the costs of the event through the generosity of our sponsors: Sonia Livingston, Northside Tavern, One Consulting Group, Maddy Moneypenny, Enercon, Blind Willie’s, and Amy Pollick and Josh Lipman as well as members of our Donor Circle. We also received in-kind donations from Costco, Datadirect, Fat Matt’s Rib Shack, Meanass Bear Graphics, Mellow Mushroom Pizza Bakers, Noize Productions (all the way from Buffalo!), Ticket Alternative and last, but not least, Tiny Design Studio.

This was our first effort and I am so proud of the result. I was very disappointed that some of the people who loved Sean were unable to attend and hope that next year, it won’t snow!

I have been asked what it is that we will do with the money we have collected. It is important to know that we consider every dollar donated as an obligation to use it to support our mission. On Sunday, for example, we donated a guitar of Sean’s and a scholarship in his name. Because they had nothing to do with Bipolar Disorder, these were family sponsored and did not use the Fund’s money. We are just beginning; however, the support and momentum has been so great, so fast that we have to catch up operationally. The donations have been respectable, but certainly will not build a facility, or support funding for mental health care. All of our staff are volunteers and every penny goes into the Fund. Over the next few months, I will be meeting with our Board and our Scientific Advisory Board to establish the steps we need to take to accomplish our mission. Each step of the way, I will keep you informed. So far, just the fact that conversations are starting
about this disorder is a step in the right direction, and as Sean said so eloquently, “There’ll be no half steppin.”

Sunday was representative of the intersection of the love for Sean and his music and the recognition of the needless tragedy of his passing. Through his light, we hope to improve the future of people who suffered as he did. It’s “All I Can Do.”