Stigma and Sean

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

As Always,

Sean’s Mom

9 thoughts on “Stigma and Sean

  1. Greg Vardaro on said:

    Beautifully, well written, and thank you so much..

    That made my day and makes me feel better. To know I am not the only one out there, who asks the same questions, to which no one really knows, the answers to either, so,, why do we still then ask ourselves so often that.. in our minds we may think we are crazy,, even though we know we are not.. and no one is really,, The question is simple and also the answer.

    “To be or not to be… that is the question”… now i get it..
    you see,, its very simple… just a matter of perception…

  2. Julie Thiets on said:

    WOW, WOW, WOW, Sean’s Mom! Sharing your personal pain to help lessen the pain of others. So powerful, so amazing!

    Your blog post contains such important info…Will add a link to this from our website. The only way to remove the stigma is to shine a BRIGHT LIGHT on it until one day we have eliminated it from the planet…

    As you well know, we share Sean’s story almost every day in the world via our VIDEO DOES GOOD program, which will continue indefinitely.

    May he rest in peace forever…As always, thank you for Sean. XOXO

  3. Tim Gafnea on said:

    Sean’s Mom,

    I miss him and i miss the way he would look at you from the stage when he knew you got the groove – a light would shine, a musical beam between artist and listener. My light with Sean started when he was 14. Even then, he burned with a passion that said “Man, I got to do this…let me know where I am and where I connect”.

    I told you this story once – at Northside at his last CD release party, I told him how the first time I heard ‘No Half Stepping’, I had to pull over and just cry…let it out… It was such a low point in my life, especially after loosing my daughter to a heart condition and my business was in the shitter. Hearing that song changed me, from that day, from that moment… It gave me hope.

    He really appreciated what I said and when he went back on stage he played it!

    Bless you, your family and all of us that he meant so much to.

    Tim Gafnea

    • admin on said:

      Tim, Thank you for reminding me about the story. You have such a perfect sense of Sean’s intention to connect. I think because he was shy, but sensitive, he needed to connect in a very personal way without using words in a conversation. The fact that he played the song immediately after was another indication of his kind soul, but also his compassion and sensitivity to others’ feelings. His music was his way of trying to make the world better. In person, he would use humor to improve a mood. He really didn’t like confrontation and avoided it at all costs. No Half Steppin is one of my favorites for another reason…..it was a reflection of Sean’s determination to come back from a sad personal place and do better. It was really autobiographical. For me, it was hopeful. I guess that’s the test of art isn’t it? It’s different things to different people. That’s the genius of it.

      I am sorry about the loss of your daughter. You can imagine how I relate to it. There is no getting over it. The grief never leaves you; you just try to sequester it in a silent place. Sometimes, though, it sneaks out and wrings your heart all over again. I, too, miss Sean. Every day. Every moment. He is a part of me, so part of me is missing. Nonetheless, I try to celebrate him as much as possible. He is still a light in my life, and many times because of people as kind and sweet as you. Having met you through your messages, I know that your daughter was a bright light, and still shines for you and your family in your memories.

      All the Best,
      Debbie

  4. leslie on said:

    Thank you for sharing your journey of loss and hurt, into hope. You are helping others, never forget that.Thank you for your transparency.

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