Nami Broward County, needing help with Newsletter & asking for general volunteers Ignores Me.

AllisonBlackandWhite

 

I just could not resist this one. At the NAMI meeting at the Drop In Center they always ask for volunteers to organize and chair their “connections” meetings, need someone to do their newsletter and all phone calls I’ve made to them (five in all) have gone unreturned. “She’s trouble,” She’s got Tardive Dyskinesia and she’s Angry…” I know because well, you’ll read it in the email I just sent them, accusing them of discrimination against me for being slightly vocal about Tardive Dyskineisa. I don’t mention it everywhere I go…but I do speak up. It’s real. I have it. There are ways to delay or avoid it and still take your medicine. That’s what I want to get across. But now I’m asking..how do you think they will respond to this email? I would lay odds they will continue to ignore me like they have the past two years.

 

Dear David and Edna

I haven’t heard anything since I did the telephone interview and left David a Followup message on ‘starting small’ to work towards a common goal. I feel that because I have Tardive Dyskinesia and occasionally mention it, I am being discriminated against.

 

This happens in the medical and psychiatric community as well. I am the face of a frightening, at times grotesque statistic, even though I’m asymptomatic and pretty happy about life.

 

I’m not angry. it happened, It took three years to get help and I did a series of friendly, low key  videos for International Bipolar Foundations’s Youtube page how to find that ‘needle in the haystack:” the neurologist who is a movement disorder specialist who further specialized in Tardive Dyskinesia, comfortable treating the mentally ill. Not all neurologists are, my friends.
I had a nurse practitioner tell me she wouldn’t take me on for fear of ending up in some bitter lawsuit if I got worse under her care and have been thrown out of every office where I simply sought a second opinion. I’ve had the same collaborative psychiatrist for seventeen years and have stayed out of the hospital for that long as well.

 

When I’m in bipolar depression remission I am still able to go places, write and do telephone outreach, so I take my lumps when I get them. But having volunteered for years at Rebel’s and suddenly being deemed ‘too unstable’ to do so again when their other volunteers pass drugs in the parking lot and call me to tell me the FBI or CIA is after them, well, one has to ask if I’m too unstable or just too threatening.

 

I don’t mean to be any trouble. It’s too bad that you can’t even find the time to call back. It’s disheartening, to say the least.

 

Allison Strong

9 thoughts on “Nami Broward County, needing help with Newsletter & asking for general volunteers Ignores Me.

    • I wrote an article about the problem with the Drop In Center and it was picked up by NAMI.org, a safe place to blog. “Stigma where it hurts the most: the mental health behavioral center.” I showed it to my peer mentor at the place, a guy who is sympathetic but stays out of it. I just don’t feel good when I go there and also know they and NAMI are in cahoots. They are both connected to the ‘industry’ in ways that make Tardive very uncomfortable to even acknowledge. And at one time I was symptomatic and that is stuck in their memory.

      Liked by 1 person

      • I’m sorry about what happened…on a plus side, it seems like I’m seeing more & more of your articles out there in the world. I was very thrilled to see the Bowie one on IBPF today! You got great comments!

        Keep going – you’re on a roll. Don’t let the dumb stuff stop you, Allison! You have vital information to share with many people.

        Like

      • I was in a ‘connections meeting.’ I have ADHD and have trouble staying with other people’s shares. so I was nodding my head and going ‘hmm hmm’ and I was reprimanded for it. I have called foul and have published to posts on this issue. See, they remember me when I had no tardive symptom management, was shaking, deeply depressed and tearful and angry on top of it all. This is what they can’t forget. Stigma where it hurts the most. My best friend, clair, was thrown out of a Nami meeting for her lack of support for the ‘tough love’ stance as her schizoaffective son still hears voices and drinks to drown them. Clair is sober but believes in free choice. “We all get to choose our own poison” she says.

        Liked by 1 person

      • You should do what I did and start your own support group! 😉 It’s not that hard. I’m going to probably no longer affiliate with DBSA – I use Meetup to get members and advertise in local papers. That way YOU can be in charge and not deal with all that awful bulls*t!

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      • but what do you do about a facility…use your home? MHA is up the street about forty minutes from here. It’s too bad I don’t have a good relationship with the nearby drop in. They used to let me develop eating disorder meetings until they decided mine was not 12-step, which was what they wanted. EDA (eating disorders anonymous) is 12 step but not a ‘black and white’ ‘abstemious’ model program. It is more helpful for those on the anorexic side of the spectrum who already have enough black and white thoughts and habits of ‘restricting’ certain foods. Have you heard of ‘Orthorexia?’ it’s a new ‘abnormal.’

        Liked by 1 person

      • I use a yoga studo – they donated their room. In the past I used two churches, a community center and once my home, but never again! I’ve heard of orthorexia but only in passing……*thanks* for stopping by and for commenting!! Xo

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