How does stigma affect you? Updated

The recent election has caused some concern for me, but not just for the fact that government is now under one political party.  Now this post is not going to be a rant on the recent president-elect.  I feel everyone is entitled to their political beliefs.  My concern is for an initiative that passed in my state that will take away my right, as person living with a mental illness, to own a gun.  Now, I have no desire to own a gun, but it’s just one more right that is being taken from me.  My problem with this initiative is that had it been written without specifically mentioning “people with mental illness”, I could have voted for it.  The idea behind the initiative was to prevent people who are of harm to themselves or others from obtaining guns, but then they specifically mentioned people with mental illness.  This is not only discriminatory, but extremely stigmatizing.

People with mental illness account for about 1% of the gun violence nationwide (US).  This bill directly targets those of us living with mental illness.  This may be a bit of paranoia speaking, but I feel it is opening the door for further legislation to take away more of our rights.  First, it was HR 2646 that was trying to take away our HIPPA rights…now this.  What’s next?  In either of these two cases, had the language of the legislation mentioned people of a specific nationality, physical illness, or race, they would not have flown under the radar as they have.  I feel as though we are second class citizens in our own country.  I have a strong feeling this is not isolated to just our country.  I could be wrong.  I still have more research to do.

Now to my question:  How does or has stigma affected you?  I’ve tried to explain why the passage of this initiative made  me so upset to others, including my own family.  People just don’t understand.  They care, but they can’t understand unless they are a target of stigma.  So, how would you explain it so that someone could begin to understand it even a little bit?  I would love to hear from you.

UPDATE: I just watched an interview onTF1 with someone that escaped the Batclan 1 year ago. He looked into the eyes of one of the terrorists. That horrible person spoke to this witness and laughed. It made me think back to this initiative. How will this initiative preventive religious and political fanatics from acquiring guns? It won’t.  It targeted the mentally unstable, not the fanatical.  Think about that.

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.

CALL TO ACTION

This is a modified letter I’m sending to all of Oregon’s congressional leaders and State leaders.  I would urge you to do something similar if any of you are glass artists or have a glass producer in your home state.  It’s too late for WA, but not for the others.  I won’t give up.  I’m doing everything I can and so are others to save an industry.  I hope you’ll join me.

I am the owner of Mind and Soul Art.  I am not an official business.  I create art for the sole purpose of raising funds for nonprofits. You see, I live with Bipolar Disorder and Anxiety Disorder.  Glass art is a way for me to manage my ongoing symptoms of my illnesses.  Sometimes it is the only way as modern medicine has not always worked for me.  Suicide rates continue to rise across the nation and I refuse to become another one of those statistics.  I am down to three medicines left that might work for me.  The only thing that has consistently worked is my glass art.

This is why I travel over 4 hours from Port Angeles, WA to Portland, OR for the classes that Bullseye provides.  I soak up their knowledge like a sponge.  While in Portland, I stay in a local hotel for several nights.  I eat in local restaurants.  I purchase from local shops.  I spend money in your state as do other people who come from out of State for Bullseye’s educational art classes.  Bullseye is not an island unto itself.  It is a vital part of Oregon.  It is also a vital part of my life.  Without their glass, their classes, their very kind and understanding employees, I wouldn’t be able to create.  If I can’t create, I wouldn’t have an outlet for the constant battles of a Bipolar mind.

Spectrum Glass will be closing its doors after 40 years because they simply can’t bear the unknown costs of what’s to come with the new EPA regulations.  Kokomo Glass is in trouble, as well, but they have the support of their local government.  Bullseye wants to do the right thing. and has done so voluntarily. Yet, unlike the government of Indiana, the government of Oregon seems to be making it very difficult for Bullseye to comply with the DEQ, by ordering Cease & Desist orders not once but twice.  This is not an accusatory statement against Oregon; this is a factual statement.

All I ask is for your help.  Please help Bullseye have a fair chance to do their part to comply with the standards that have been set forth.  Allow them to have a fair amount of time to fix the problem areas that need to be fixed.  I urge you to step in and do something to correct this situation because it is not only good for Bullseye as a local, small business, but it’s good for the Oregon economy as well.

It is not only Bullseye that stands to lose their business, but the thousands of others that rely on their products for their own small businesses. I believe, not long ago, the auto industry and the banking industry needed the government’s help and it was given to them.  Please consider helping Bullseye by giving them a fair and equal chance.

Thank you for your time. I know I can count on your support.

 

What will your mark on the world be?

 

To be one, to be united is a wonderful thing. But, to respect the right to be different and the rights of your fellow-man is even better.  We are here for a fleeting moment.  What will you do with your time?  For what do you want to be remembered?  What mark will you leave on the world?

I have always wanted to take on the world and help others when I could.  This has not always met with kindness.  Yet, I don’t give up.  Some have questioned my motives, thinking I do this to as a means to gain attention…not so; others think I do this for personal gain, not so.  I choose to help others because I want to.  Also, because when I was at my lowest point, someone was there for me to lend a hand.  Someone cared enough (without knowing who I was) to show me kindness, to tell me I was worth something and that I was somebody.  I know how that kindness feels and how that kindness can change a person.  I want others to feel that as well.   I see it as a gift I am allowed to give another human being.  It brings me great joy. I don’t see it as penance, for I have done nothing wrong.  I have a mental illness and I have those low times where I need help.

I don’t how much time I have left on this earth.  What I do know is that I want to make every moment count.  So I focus my time on my family and friends.  I also try to help as many people as I can.  The way I do that is through my art (stained and fused glass art).  As many of you know, it is my art that helps me control my Bipolar and Anxiety symptoms (yes, I do still take medications).  As many of you also know, sometimes medication isn’t enough.  My glass art has saved me so many times.

Now, the main supplier of my glass, Bullseye Glass (and the glass industry at large) is under attack (for lack of a better word).  I go to Bullseye for classes to learn new techniques and I absolutely love the employees there.  They are kind, knowledgeable and they put up with my craziness!  I remember the first time I went there for a class.  Oh my goodness!  I’m sure they had never met someone quite like me.  I just asked a ton of questions.  I think I was there for three hours and this was the day before the class!  I was picking out glass, asking questions about how to make projects,  questions about the sale in July, my goodness the questions from me seemed never to stop.  They were very kind to me.  Every time I call in, they seem to remember me.  I don’t know if they really do, but they play it off  well.  I’ll take it!  🙂  Anyway, I think you get my point.  They really care.  So, I won’t go into detail about what the State of Oregon is doing to them because I don’t have all of the facts and I don’t want to spread more rumors.  The one real fact is this:  Their business is threatened.  This effects not only Bullseye and it’s employees, but thousands of glass artists world-wide.

So, back to my original question: What mark do I want to leave on the world?  I’ve already established that I like helping others.  I know it goes beyond “like”.  I feel compelled to help others.  It’s become a part of who I am. Since this all happened with Bullseye, I’ve gone into full advocate mode sending out congressional contacts to concerned glass artists, working on a form letter (which must be cleared with Bullseye), fundraising mode to help them…  The mark I would like to leave on the world is this:  Whether I am remembered or not is immaterial.  What is important is the work I do.  If I have made the lives of people better, happier, easier, then I’ve made my mark.  The world doesn’t need to remember me, I will just feel better knowing that I’ve made some kind of difference.

I will leave will you with your own question and yes, I would really like to hear from you.

What mark would you like to leave on the world?

Sanity Break

I haven’t written in quite some time.  I took an unintentional break from blogging.  I won’t go into a ton of detail as it is private, but not bad.  So here goes…

I titled this post “Sanity Break”, but I did not lose my sanity.  I will admit…I was under a tremendous amount of stress.  I decided that I needed to get away for awhile by myself.  I needed to sort through some of my thoughts, emotions, behaviors, just everything.  So, I went to Ireland.  Isn’t that what everybody does?  (insert sarcasm)  I needed to reconnect with a very dear friend I made back when I did charity work for Chernobyl Children’s Project (now Chernobyl Children’s International).  I was there for a week and it was wonderful!  I saw parts of Ireland that tourists don’t see.  I have been before and seen the touristy bits.  I just wanted to explore, work on my book, and think.  Well, I explored.  I didn’t write.  I didn’t do much thinking and that was okay.

This trip was just what I needed.  For an entire week, my mind was devoid of racing thoughts, actually any thoughts at all.  All of my anxiety was gone (expect the usual anxiety before a plane ride).  So, except just before each plane ride, I did not take any anxiety medication at all on this trip…none!  This never happens.  It was wonderful!  What it taught me was a peaceful mind is achievable.  I’m not saying you have to go to Ireland to get it.  I do think a get away by yourself is a wonderful idea, even if it’s just the next city over or a few blocks away.

I do understand that finances can be an issue.  Camping is a great option and can be relatively inexpensive.  You can always stay with a friend.  The important thing is to remove yourself from your environment that is causing the stress.  If an overnight is not possible, try getting away for a few hours.  Plan a nice picnic for yourself with a good book.    Your get-away doesn’t have cost you a fortune.  It just has to get you away.   I do think the longer the get-away, the more beneficial it will be.  However, you have work within your means and your comfort level.

Since I’ve been back, stressful situations have come up.  I have caught myself falling back into my old ways of getting anxious and irritable which leads to arguments and that’s just not good for anyone involved.  Now, I stop myself.  I actively say to myself, “Wait a minute.  You had a week of no anxiety, no anger, no racing thoughts, no jitteriness. Why are you letting this situation get the better of you?”  Okay, so I may not say exactly that, but something like that.  The gist of it is I recall that period of calmness and use it.  I know I can achieve it because I did.  It’s possible.  So I keep using it and I don’t give into the anxiety and anger.  Now that I’ve known that kind of peace, I don’t want to give it up.

The moral of this post, take time for yourself.  It is not only good for you, but the ones around you as well.  My household is a much happier household now that I took a little time for me.  It may seem selfish to someone on the outside, but it’s not.  It’s survival.

Mental Health Advocacy & Congress

This post will be short for now.  I will update you all later today.

First, I would like to thank everyone who has submitted their personal stories for my Congressional project.  Today’s the day!!! I will be meeting (on the phone) with a couple of Congressional members to share your stories, as well as my own.  Today, your voices will be heard.  It’s not the DC round table discussion that I had hoped for, but it is a start and I believe it’s a good start.

There have been scheduling conflicts that have delayed these meetings and have made it so that they are over the phone instead of in person, but that’s alright.  It’s still a meeting with a congressional member and they’re willing to listen.  I’m happy.  I will let you all know tonight how everything goes.  🙂  And thank you again, without your support, I couldn’t have done this.  We Matter!

The President “Responds”!

Okay, now I support the President, but I’m not a fan of everything he has done over his two terms.  What President has done everything perfectly well throughout their term?  Anyway, he has done tremendous things for mental health.  For instance, he finally fully enacted Patrick Kennedy’s Mental Health Parity Act of 2008.  So, kudos.  I decided to write him and ask for a meeting. Yes, I know I had a snowball’s chance in hell of actually getting that meeting.  If I didn’t ask, then I would never get it.  I knew this meeting was never going to happen, but in that letter I also let him know what it was like for those us living with mental illness. What it’s like navigating the mental health care system.  The stigma we face in the workplace, home, hospital, school…   I thanked him for what he had done so far.  I urged him to continue to do more.  I did explain that I was also an advocate.  How I have actively helped pass laws locally and nationally.  How I’ve worked with soldiers on and off military bases.  How I work with students.  This was the response…

Dear Susan:

Thank you for writing.  I have heard from many Americans whose lives have been affected by mental health problems, and I appreciate your taking the time to share your thoughts.

As you may be aware, in any given year one in five adults experiences a mental illness such as depression, anxiety, bipolar disorder, schizophrenia, or post-traumatic stress, and many others are troubled by significant emotional and psychological distress—especially in times of hardship or difficulty.  They are our family members, friends, and neighbors, and I believe there are things we must all do to help.  As a Nation, we can strive to eliminate the barriers that still keep people from accessing life-changing treatments.  We can also make sure every person struggling with psychological and emotional pain knows that asking for help is not a sign of weakness—taking action is a sign of strength.

My Administration has worked hard to help increase mental health services and improve access to care.  We are working with community health centers to expand the availability of behavioral and mental health services across the country, including in rural areas.  And thanks to the Affordable Care Act, over 60 million Americans now have expanded mental health and substance use disorder benefits and parity protections.  This law also prohibits insurers from denying coverage because of pre-existing conditions like a diagnosis of mental illness, and it requires most insurance plans to cover recommended preventive services without copays.  Additionally, as part of the BRAIN initiative, we are supporting innovative research that aims to revolutionize our understanding of how the brain works and uncover new ways to address conditions like depression.

We continue to support our troops and veterans.  I signed the Clay Hunt Suicide Prevention for American Veterans Act on February 12, 2015, which authorized additional steps to address mental health and prevent suicide.  The year before, I announced 19 Executive actions that make it easier for members of our Armed Forces and veterans to access the care they need, when they need it—including a new policy that will ensure the continuity of medication for mental health problems as service members transition to care at the Department of Veterans Affairs (VA).  The VA has also worked to increase mental health staffing, enhance community partnerships, and expand the capacity of the Veterans Crisis Line.

To learn more about mental health assistance and health care reform, please visit www.MentalHealth.gov or www.HealthCare.gov.  Calling 1-800-662-HELP is also a free, confidential way to receive a treatment referral or further information. 

Again, thank you for writing.  Michelle and I—like so many Americans—have known people who have experienced mental health problems, and we understand the effects these illnesses have on their lives and on their families.  We must continue to work toward better prevention and treatment, and as caring individuals, we must do what we can to ensure those with mental health issues get the care and support they need and deserve.

Sincerely,

Barack Obama

I do realize that the President did not write this email to me.  I also realize that the person who did, obviously did not read a word of the letter I sent.  Yes, I snail mailed a letter…the old fashioned way.  Although I did expect this, I am a bit saddened by it.  As an advocate, I am well aware of all the stats.  I certainly don’t need to learn to go the .gov sites.  I didn’t expect the President to actually read the letter, but at least a staffer would have been nice.  I know I’m no one important.  I don’t have that much of an inflated ego.  It’s just interesting.  Imagine if we all wrote letters and sent them on the same day.  I wonder if we would all get the same response or if someone would actually take notice.  Hmmm.

*Please do not make any negative political comments.  I know not everyone is a fan of the President.

Question Time!

Do you agree with this statement? Why or why not?

“Being bipolar is not an illness, but an advantage because both mania and depression give me insights that are not available to those who cannot experience them”  ~ Tom Wootton

I have started an online course called Bipolar INorder by Tom Wootton.  I’m finding it quite fascinating.  I’ve wanted to take it for some time now.  Many of you may have heard of Tom Wootton.  I’m very curious to read your view points to his statement.  I tend to agree with him to the point that those who do not have bipolar will never experience the world in the same way as I do.  However, I’m not quite ready to let go of it not being an illness yet.  Not just yet.  Perhaps at the end of this eight week course I will.  I can see his point.  Once we start seeing bipolar as an identity (like “I am an educator or I am brave.) then the stigma is lost and no longer has any power.  If we keep viewing it as an illness, then the stigma is allowed to exist.  I’m still trying to wrap my brain around this concept.  I can see both sides.  I do see advantages to having bipolar.  In fact, that is exactly why I started writing my blog.

Well, I’ll stop my writing of this post so I can publish it.  I am anxious to see what all of you think.  Remember, there are no wrong answers to this.  Every opinion is valid.

Thanks for reading!

 

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.