This is a letter I wrote to a woman on the board of directors of NAMI Broward County
It’s hard when they ask for volunteers again and again but don’t return my calls or respond to my application. Ever since Tardive Dyskinesia, people see me differently, even though I exhibit no symptoms. I’m not even angry about any of this…..it just is. Maybe I’m meant for something else.
Thank you for emailing me back.
One of the reasons I was interested in volunteering for NAMi is to understand how our government works. The difference between an’ act’ ‘ballot initiative,’ etc. I have seen a few things lately that do not seem fair. Especially in our state. I think some activism is aggressive, silly and preaching to the choir. Like Hashtag campaigns and protests outside gates of pharmacy companies.
I’m speaking with John Rother at National Healthcare Coalition in DC, the FDA’s Orphan Drug Development Department and other people on this business of skyrocketing Generic Prices as I am doing a a consumer article about how to predict and prepare for things like ER Depakote shooting up to 1700 because it’s been repurposed and reclassified ‘Orphan.’ My Tardive med is now 300 a month and it’s an ancient generic like Klonopin. I want to volunteer in more ways than writing and John Rother told me to hook up with local Nami. It’s not for lack of trying on my part.
Nami knows how to advocate effectively. Not only do I want to write a series “Advocacy Made Easy,” I hoped to soak up Nami’s wisdom by being a ‘part’ of.
I did call David and over the phone fill out an application. Are you aware this is the fourth time I have tried to volunteer for my local NAMI?
In the past, I have started, publicized, nurtured new peer support meetings and at AA they still ask for me to come chair meetings because I am vigilant, spontaneous and can think on my feet. This is from two decades of live radio. That is the volunteer activity I’m best at.
Can you imagine attending ‘connections’ meetings, hearing over and over the need for volunteers to facilitate new ‘connections’ meetings and to call the office four times and have the calls never returned?
Edna, I feel I am being discriminated against for having tardive dyskinesia and speaking about it. In addition adhd impulsivity, before it was under control….let’s put it this way. I volunteered for Rebels and nurtured Eating Disorders Anonymous, Dual Recovery and finally OA before I was knocked over by tardive. I am not angry about it, I’m getting used to it.
It took three years to get it under control. I couldn’t drive or sign my name for three years. I must have gone on twenty docs appointments and ER four times.
It took two more years to get over my anger and grief over the process and stigma I encounter and still do within the medical and psychiatric community. When I came back around Rebel’s Decided I am unstable. Yet other volunteers of theirs call me to say they are being followed by the CIA and one of the secretly slid me a bottle full of narcotics wrapped in a New York Times.
I do telephone outreach for International Bipolar Foundation but I soooo wish I could have a peer support meeting. I might get involved with DBSA and try to get space donated from the Hollywood Beach Community Center and have a DBSA meeting in South Broward, as there isn’t one. I will have to drive up to Margate and Pompano, but I can do this.
Thanks for being kind to me and letting me know there was at least one person within Nami who cares.