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.

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.

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.

“To have Bipolar Disorder or to be Bipolar”

The 1st night of my support group, that I had to drive over 60 miles to get to (that was the closest one), I was amazed by how many people that were there.  There had to be at least 20.  So the facilitator, who has become a good friend of mine (we’ll call her “R”), started off the group by having us go around the room and introduce ourselves, say what disorder we had, and how our week went.  (It was a weekly meeting.)  

She finally gets to me and I have heard many people say “I have bipolar, I have depression, I have schizophrenia…”, but it didn’t really register with me.  So, I begin by saying that I’m Susan and I’m Bipolar. My week…  Before I could finish, “R” has interrupted me (and to this day I am so very grateful for this) and says to me, “You HAVE Bipolar Disorder.  You are not your illness.  It is a part of you.  It is something you have.  It does not define you.”  I may be paraphrasing (it was quite a long time ago), but the main idea is the same.   I am not defined by my mental illness.  This has stuck with me for many years and is something I pass on to others whenever I hear someone say “I am Bipolar”.  NO, you have Bipolar Disorder.  “I’m depressed.” NO, you have depression.

By saying we are our mental illness, we let it define who we are.  At that point, the illness takes over and for me that just isn’t an option.  Our mental illness is just one of the many things that makes us who we are.  Whether we are proud of it or want to hide from it, it is a part of us.  Once we accept this, we can truly begin to explore all the possibilities it has to offer.  

Yes, you read that right…possibilities.  I look at my mental illness as an opportunity to educate people that we are just regular people and not to be feared simply because we are “mentally ill”.  Because we all know how the media loves to portray us.  It’s an opportunity to educate legislators (state and national) on what policies would actually work in the world of mental health care and suicide prevention.  It’s an opportunity to reach out  to people who have lost someone to suicide and give them a glimpse of what their loved one may have been feeling.  To help them in the grieving process.  It’s an opportunity to speak to someone who is newly diagnosed or maybe not even diagnosed yet and assure them they are not alone.  There are so many opportunities available to us.  We just have to reach for them and start achieving them.

Now, I know having a mental illness is not all sunshine and roses.  That’s not at all what I’m trying to say.  I’ve known those deep, dark days where it never seems like any light can penetrate it.  I’ve been to the abyss and almost not made it back.  There is a real danger to mental illness.  My point is that acceptance and perception can go a long way to improving those dark days.  By accepting what we have and realizing we are not our illness, being willing to be our own advocate and an advocate for others, our perception of the illness can begin to change.

I keep very busy with advocacy and suicide prevention work.  I still have my dark days, but I push on (as I know we all do).  The whole point of this is that “the being bipolar” tends to pigeonhole us into a label which can victimize us.  I don’t know about you, but I’m certainly no victim and others I know are not as well.  By saying “I have bipolar”, this allows us to take ownership of the illness.  To relegate it to just being a part of us and not the whole of us.

I’ll leave you with a couple quotes:

“I HAVE Bipolar Disorder.  I am NOT Bipolar.  I am NOT my illness.  My illness is PART of me.” – Anonymous

“I’m more than you know
I’m more than you see here
I’m more than you let me be
I’m more than you know
A body in a soul
You don’t see me but you will
I am not invisible
I am here”

-U2

 

Never Ending Saga of Community Mental Health

So, as you know I fancy myself a mental health advocate.  I’ve done it for years for a certain charity and now I’m on my own.  I’ve been helping a friend work her way through the horrors that are the Community Mental Health System.  I’m trying to give her strength and a voice.  I wrote in an earlier blog about getting my Congressman involved in this matter.  Well, now it’s really time to get him involved.

So, I finally get my friend, we’ll call her “B”, to make an appointment with the director of the center.  It’s set.  I have her write down everything that has happened to her since she walked in the doors.  It has been horrible treatment that I know is not isolated to my town.  So, she finally gets the courage to do this and we go for the appointment.  They try to tell us that it was scheduled for tomorrow. “B” has a voice recording of the director confirming our appointment for today.  He then expects us to wait 30 mins. while he finishes a conference call.  This was unacceptable.  I then told his little minion (oh, maybe that’s not a nice thing to say…oh well) that we had other engagements (true) and that the director had just lost his chance.  We were now going to the Congressman.

Maybe I shouldn’t have said that, but really aren’t they suppose to value their clients?  She has been treated like a number ever since she started going there.  The crisis center (still a part of this center) actually talked her out of going to the hospital when she was suicidal.  Who does that?  I’m fortunate that I don’t have to go to this center.  I think if I did, I would opt out of treatment.  Just because patients are on state assistance does not give anyone the right to treat them with any less dignity.  They still deserve high quality care.  I understand about state funding cuts to these centers, but those cuts shouldn’t effect whether or not you treat someone with common decency and kindness.  It’s horrible when you walk into a waiting room and the secretary staff is behind glass.  If they’re going to be behind glass, please make it sound proof.  Patients should not be able to hear the staff talking about them.  For one, the staff should not be talking about the patients anyway.

I’m just appalled by the utter lack of concern for patients.  Also, when a patient does finally decide to stand up and say something, they are verbally attacked by the staff.  It’s just wrong.  We all need to take a stand on the quality of care in community mental health clinics, not just in our own towns, but across the nation.  If the quality of care is not there, people will not seek help.  Now, I should qualify all of this…there very well may be some good community mental health clinics around.  If there are, then they should be used as a model for the rest.  The goal is to get people to treatment, treat them well, and help them on the journey to recovery.

Okay, my rant is over on this subject…for today.