Don’t Ever Give Up

Hello my friends!

I know it has been quite some time since I have written in this space.  I have been busy starting my art business, Zarit Glassworks (shameless plug, I know.) and trying to get my migraines under control.  I have also been hard at work with mental health advocacy.  I have never stopped that.  It has and always will be a passion of mine.  I may take a break from time to time as needed, but I always come back.

Well, today, I and a few others met with two of  Senator Murray’s staff members for two hours.  We were able to share our stories, our experiences, our concerns about mental health care reform, our concerns about current/future policies.  It was wonderful!  It was an incredible opportunity.  It was something I never thought would be possible on my own without the backing of a large organization.  I’ve never made it a secret that I parted ways with AFSP.  However, I harbor no ill feelings toward them at all.  We may have a difference of opinions, but without them I would not have the voice I have now nor the advocacy skills I possess.   In fact, I even advocated for their Centers of Excellence today because that is one of their lobbying points that I happen to agree with.  I still direct people to them for support and I even help people with fundraising for them.

Anyway, I’m not sure what the outcome will be of today’s meeting.  One thing I do know for sure, it felt great to have the ear of the highest ranking member of the senate.  Even if nothing comes of today’s meeting, I can rest easy now.  I know in my heart that I have truly done my best.  I can now get off my soap box about HR 2646.  I believe our HIPPA rights will be fine.  I know CIT for first responders is going to be alright.  I know Congress has been educated by people living with mental illness.  I know I have been heard.  What more could I ask for?

I can’t control what Congress will or won’t pass.  All I can do is try to educate people and hope it makes a difference.  For those of you that sent me your vignettes in the past, they made it to Congress.  They were read.  They would like more.  Please feel free to send me more.  I am happy to pass them along.  My email is bravelybipolar@gmail.com.  Just keep it to one page in length.

I will try to write more often.

Thank you for your support and thank you for reading.

Advocacy in Action

I blogged numerous times about my advocacy efforts.  I have complained about how hard it has been to go out on my own since leaving a national nonprofit.  Well, today I am here to tell you that it can be done!  One person can do it.  It takes a lot of time, patience (which I really do not have) and determination (I do have that).

If you will recall, I made several posts asking for you to send me your experiences living with mental illness so I share them with Congress.  I had a grand plan of having a round table discussion with a few members.  Well, the round table discussion did not happen.  What did happen was this.  I began calling each of my State members one by one for meetings.  I was only able to get one meeting, not even with my one Rep.  To be fair, that one was my fault.  I had already met with him personally and they wanted me to meet with a staffer.  I felt offended.  I have no idea why.  I’ll chalk that one up to Bipolar.  Any way, the one I met with really listened.  This has turned out to be a great working relationship with his local staffer. She has kept me informed on legislation and helped me get a meeting with one of my Senators…well the legislative aide.  And here is the rest of that story:

I had a meeting with my Senator’s legislative aide and it was absolutely wonderful. I told her of my concerns about Rep. Murphy’s bill (HR 2646). You know that fact that it will violate HIPAA laws and that of the 5 committees it forms, only one has a person with a mental illness on it. Oh, and that committee has NO power to do anything! Also, he’s getting rid of SAMSAH (I know the H is the wrong spot). I also talked to her about the partner bill in the senate (S.2680). The main problem with that one: HIPAA violations. She really didn’t think Sen. Murray would let anything pass with HIPAA violations. She also agreed with me that HIPAA violations would not prevent another Sandy Hook as Rep. Murphy is hoping. I felt so reassured. She actually agreed w/ me the correct statistic that people w/mental illness account for 1% of the violence nation-wide. Finally, someone who understands!

Anyway, as we left it, I will be asked to speak to committees and both of our Senators’ about living with mental illness. Now, will any of this change Murphy’s bill? I don’t know, but it might help change that senate bill. At least my voice, and others because I brought those stories I asked for months ago, were finally heard.

All in all, a good day. I even talked about the plight of Bullseye because art is a form of therapy. I gave her my letter that went to Oregon rep. as well. Not bad for being with a nation nonprofit anymore. I’m finally able to speak freely about what it is really important….preventing suicide and helping people like me, people living day in and day out with an illness of the brain

The moral of my story is this: Keep trying.  You will be heard.  My State senator is the highest ranking member of the senate and now our letters are firmly in her hands.  Our voices have been heard.  What will come of this?  I don’t know.  All I know is this:  I didn’t give up even when I so desperately wanted to.  So to all of you, please don’t give up either.  Keep writing your members of Congress.  I will help you if you need help. I will give you guidelines for writing an advocate letter, timeline for sending and re-sending letters and help with phone/in-person meetings.  Just don’t give up.  The more of us that do this, the louder our collective voice will be.

Losing Our HIPAA Rights

I’m reposting this in light of recent events in Oregon because Rep. Murphy is using the campus shooting as an excuse to promote his bill. Again I say, we are not the ones to be feared. Gun control is what we need. Not a bill restricting the rights of those that account for only 1% of the violence nationwide. Get facts straight Murphy! We all want the mental health care system to be improved, but don’t attack us, don’t shackle us and don’t single us out. Work with us, for we have so much say that is important, valid and worth listening to!  Congress should not make laws based on irrational fear.

That is if Rep. Tim Murphy has his way. Yes, he’s at it again. He has re-introduced his oh so lovely “Helping Families in Mental Health Crisis Act”. Oh my goodness will that man ever stop?! And please, Mr. Murphy, stop calling yourself a psychologist! When was the last time you actually practiced? If it were recently, he would not make these horrendous changes to HIPAA that he is proposing in Sec 401 pages 115 through 120 (look them up people!). I can’t believe that anyone who does or has treated mental health patients would allow a “caregiver” such access to our records. If he ever truly did treat patients, he would know that our privacy is all that we have. This HIPAA situation is exactly what I wanted to speak with him about, but, nope he wasn’t going to listen to me. You may say it’s because of “rants” like this one. But I don’t “rant” until I have exhausted all options in a respectful manner. Yes, I was respectful…well up until the very last email (which I did post for all of you to see). There is the added bonus that I highly doubt Mr. Murphy reads any of my posts. After all, he wouldn’t even take a phone call!

So, we have an already failing “mental health care” system that is over loaded, under staffed, uncaring, uneducated… For those of us that do finally make that gut wrenching decision to get help, we are treated like criminals and/or children that couldn’t possibly understand what is happening to us. Is Murphy’s bill going to fix that? NO!

I understand that family members of adult children would like to have more of a say in the care of their loved one. The fact of the matter is, their loved one is an adult. Whether that adult, in the opinion of the “caregiver”, is capable of making decisions for themselves…as an adult they are. As an adult, if they don’t want to seek treatment or aren’t ready to seek treatment, that is their choice. It may not be the best choice, but it is their choice to make. Allowing people to have information from private sessions with a mental health professional is not the answer. The way HIPPA works now is just fine…I’ll use myself as an example.

My husband can call my doctor and give him all the information that he wants. My doctor will say thank you and that is all. It is a one way road of information, none of my information goes out. Now I have nothing to hide from my husband, but knowing that I have this safe haven to turn to at any time is comforting. If Murphy’s bill goes through, that one way road becomes a two-way road. My safe haven is destroyed. Not just mine, but millions of others. You may as well chain me up now because this bill restricts what I can and can’t say in my sessions…if I even choose to continue to go. Millions of people will be facing this same dilemma. So, if Murphy’s bill goes through, he will have single-handedly made a broken system much worse.

You may feel differently than I do about this and that is fine. Everyone is entitled to their opinion. I feel very strongly about this.