Spotlight on Erasing the Stigma ~ St. Louis MICDS Documentary: Living With Mental Illness

Sometimes, just like the transformation of a delicate, beautiful butterfly with iridescent colored wings, the very things that matter most to many of us like our family, our friends, change, acceptance and support take awhile to grow.  We plant the seed…we wait for it to take hold.  We nurture…we watch.  We tend to…we love.  We prompt…and we patiently wait and hold onto hope.  And then, just like the butterfly, the very thing we were growing slowly and miraculously unfolds.

Erasing the stigma is one such thing that is near and dear to my heart as it is to many others.  And it is slowly unfolding as people talk more about it, and it’s being erased one person at a time.  One step my family and I have taken to erase the stigma is that we talk openly about mental illness, the challenges we face and how we cope as a family of a loved one with bipolar disorder.  And our loved one also desires to talk about living with bipolar disorder, and with time and support I am sure she will become an advocate helping others who walk the same walk.

It’s not easy being an open book.  There is this overwhelming sense of vulnerability that I sometimes feel that accompanies being open about mental illness and it’s effects.  I also have a gnawing sense of guilt.  I call it mommy guilt.  My mommy guilt thermometer rises as I find myself asking the question, “How can I put my family on the front-line of something so vast?”  And then I remember why.  It is for the very ones I love and the immeasurable number of others who are affected by stigma.  After all, we can’t just put stigma aside and expect for it to fade away.  Like the documentary points out 1 in 6 Americans is experiencing a mental illness this year.  Furthermore, stigma about mental illness prevents half of those with mental illness from seeking treatment.

To that end, Kim and I accepted an invitation to participate in the MICDS documentary titled: Living with Mental Illness: People are More than Patients.  After weeks of preparation students’ Anna, Chris and Darryl’s Mental Illness Documentary is complete.  It includes a segment from a Charlie Sheen interview and interviews with Tom, Fran and Kevin Smith of the Karla Smith Foundation, advocate Ellen Rosenbaum, Arlen Chaleff, Vice President of NAMI St. Louis, myself and Kim singing since she wasn’t present.  She sings “Mercy on Me” by Christina Aguilera, and at one point viewers will hear Kim singing “Save Me from Myself” also by Christina Aguilera.  These particular recordings are from 2007.

They did an excellent job of capturing the humanness of mental illness through the lens of families affected by mental illness and suicide and those who have and still struggle with emotional disorders.  They also did a beautiful job of showcasing the strengths and potential of someone with a mental illness.  Ellen Fein Rosenbaum is a past honoree of the Ten Outstanding Young Americans annual award along with honorees such as John F. Kennedy, Elvis and Bill Clinton.  Arlen Chaleff, Vice President of NAMI St. Louis, was one of four chosen for the St. Louis 2009 Women of Achievement Award.  And then…there is Kim.  She was our song bird, and as I mentioned in the interview, she seems to have lost her voice for now, but we have hope that she will regain balance and pursue her interests once again.  Just like the butterfly…it may take some time.  We tend to…we love.  We prompt…and we patiently wait and hold onto hope…

Sadly, Kim was not present for the interview as she had hoped she would be.  She didn’t make it home the night before.  When morning made it’s grand arrival and I wandered into Kim’s room I discovered her bed was empty.  In that moment I thought about calling Anna and canceling my part of the interview.  Then I thought…wait a minute…this is “our normal” so why not do the interview after all.  When Anna and her classmates arrived for the interview excited to meet Kim I gave them the news.  I felt like we had let them down.  However, it became a teachable moment.  I shared with them that she sometimes self medicates and that that was what probably happened.  I also shared that we actually live each day not knowing what’s to come.  With that we did the interview.  I wish Kim would have been there.  She did show up later that day and thankfully she was safe.

We tend to…we love.  We prompt…and we patiently wait and hold onto hope…


7 thoughts on “Spotlight on Erasing the Stigma ~ St. Louis MICDS Documentary: Living With Mental Illness

  1. Cinda says:

    Beautifully expressed! It is frightening to be open about a mental illness in one’s family but it is more painful to hide it (and thereby telling our daughters that we are somehow ashamed of an illness that is no fault of theirs!). I know you know this!!! Your story reminded me of a month of events that Linea and I had already agreed to do and then she became ill and was unable to present with me. It was heart-aching to be on the stage without her but it was also a model for choosing to take care of one’s self first. Kim is on the road to recovery and stability. It takes awhile and there are big” ups and downs” along the way but she will get there. Love to you and your family Stacy! Cinda

    • stacysflutterings says:

      Thank you Cinda for your kind words! They mean a lot to me and Kim. I am so thankful that I had the privilege of meeting you and Linea. You are extremely inspirational to Kim and I as well as countless others. You uplift us all and give us hope! Love to you and yours as well!


  2. Pat W says:

    You know, Stacy, I feel awkward just posting this comment….so I am so VERY impressed, proud and thankful for your willingness to push through the vulnerability and share your intimate experiences to help others. Meeting you, the Smiths and so many other incredible people this summer will forever remain one of the most rewarding experiences of my life.

    • stacysflutterings says:

      Pat, you made me cry! I am so blessed to have met you, and it was you who encouraged me to blog about our experiences. I finally know my purpose…and that is priceless. Thank you from the heart! Love and hugs ~ Stacy

  3. annamporter says:

    Thank you Stacy for posting–and Cinda for sharing the link for–this documentary. It was indeed well done. However, many in the film mentioned the stigma around admitting to and treating mental illness. For my son, Kyle, and I it was not the admission that kept him from being helped it was the denial. It was the denial of his own father (my husband), his siblings (which continues with some of them today), our families, our friends, educators, and even the parade of therapists, psychologists, and psychiatrists and ultimately Kyle himself that made our lives a living hell even over and above Kyle’s symptoms. I alone believed there to be “something wrong” and I was left in my own little universe, having to “deal” with him and keep searching for help virtually alone. (we didn’t hear about NAMI until Kyle was an adult and the programs here for helping were geared toward minors. By then there wasn’t much I could do because he wasn’t interested in trying any more help). We did try therapy (as mentioned before) and at best they didn’t “get” Kyle; at worst they accused him of being a fake and me of being responsible for what was wrong with him! Medications didn’t work for him either. Unfortunately–and fortunately–he has found one that works but it could land him in jail: Marijuana. And even though we live in Washington State where we have our own law for medically approved marijuana use, it is still not approved for mental illness and most reputable doctors are too afraid to balk at the feds. So Kyle must medicate on the sly, paying exorbitant prices, hoping what he gets is “safe,” and never being able to travel because he can’t take his “medication” with him. But he is more stable and happier than I ever remember him and we are happier too. But, we do indeed have a very long way to go…

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