Why the 21st Century Cure Act is at the Heart of Everything

I have heard the words cure and mental health only one time before, in the Presidents New Freedom Commission Report.  I can hear this report in my head, "envision a future when everyone with a mental illness will recover, a future when mental illness can be prevented or cured...."  Are we at that day with this legislation, I don't know really.   I do know with some maverick legislative moves NAMI advocates version of a bill usurped a painfully crafted compromise bill that involved a broader spectrum of advocates.  There is a spectrum of mental health advocates, this is very important to note.  We don't all agree easily.  Where we seem to disagree is at the heart of this word "choice".
Key components of the Cure Act's mental health components are centered around the civil right to choose treatment, or choose whether or not I want my mom to know where I am.  I have had my civil rights taken many times and during these times I always take away my mothers visitation rights.  My mother makes me very angry when I am ill, which just leaves me more ill.  
The first time my civil right were taken, I was obsessed on the loss of freedom for months as I languished in 4 hospitals in 2003.  I hated the notion of taking medication.  There was a man that told me, "You will take medication for the rest of your life."  Well, I was determined he was wrong and he was.  I came in contact with the consumer movement.  There are leaders within the movement that claim their recovery does not include medication.  They claim the oppression of psychiatry is wrong, that it is wrong to force treatment.  Well, when there are beautiful alternatives like peer support that made sense to me.  I came off my medication with a psychiatrists assistance so I could give birth to my son.  I went four years med-free.  I loved my life, but the truth was I was a little fearful of others during these years.  See I am a victim of many crimes, and when I am not on medication fear is really an exaggerated experience.  This experience of fear snowballed and exploded at a time where I almost lost everything.  I was hospitalized against my will again in 2011.  I was sure my coworkers had put nuclear waste in my water supply.  I drove my whole family to Georgia, thinking the nuclear waste was following me in the trucks passing.  I took my son to Children's to treat him for radiation.  They were so kind to assure me that he wouldn't have his fine motor coordination in tact with the stickers they gave him, if he had radiation damage.  They quickly moved me to a hospital and I became sure my entire family was being crucified on the roof of the hospital.  I was sure this was being broadcast on the TV.   The whole experience was traumatic and horrible, but the truth is if I had driven my car to a peer respite I helped design, they would have turned me away as being too serious.  
What I am trying to say is in that moment, I chose medicine.  I would do anything in the world to make that experience go away.  The medicine has kept it away and I am glad I was hospitalized that day.
So, I was talking about cures, the Cure Act is promising as its titled.  The problem is the mental health reform legislation that is being folded in is a early version.  The compromised version that included the voice of all advocacy groups was trashed.  I am not saying one is better than the other, but I am saying that all voices belong.  If it weren't for the consumer movement, I wouldn't have had support in choosing to have a son.  My life would be so different without his laughter.  If the hospital had not forced my treatment the second time, my son might not have the mother that he does.  I think that until our world is very different, we need both to exist.  Real choice can not exist, without all the voices at the table.

Points Made the Difference!

Our family has experienced a great deal of unrest this Halloween season, but it all has turned around with a point system.   We never really instituted a earning system for our son.   His goals came in the picture when we had money and focus, but we never were very planful.  The doctor said what's happening is genetic and we were giving him the caring environment he needed.   I think caring is important, but tapping to into a child's goals and dreams with parental expectations can really change an emotional overload for a child.  So he has a chore list of expectations and a reward for meeting most of them on a daily basis.  It's been like a light switch miracle to some real challenges.  So simple and so easy.  I remember what a hard time I had when people weren't cueing into my goals and dreams, so I feel stronger as a caring parent with this system.

A New Seasons of Love Song

2,181,423 People

2,181, 423 People

2,181,423 People

Attempt or Die by Suicide in A Year

In children, in teens,

in adults, in older adults,

in women, in men,

in veterans, in the US,

2,181,423 People

How do you measure a year in living?

How about love?

How about attention?

How about prevention?

Measure in love

Seasons of love

Seasons of love

 2,181,423 People

2,181, 423 People

2,181,423 People

How do you measure the life,

Of a child, woman, or man?

In the truth she learns

Or in the time times that he cried

In the bridges he burned

Or the way she lives

Its now time to sing out

The story will change

Let’s make it zero

Remember a year in life of friends.

Remember the love

Remember the love

Remember the love

Measure in love

Measure in love

Measure in love

A Halloween Surprise!

So I have spent weeks worrying about my son's psychological health, because he came home telling me that there are ghosts in the bathroom at school.  So, I explained this to the pediatrician and she gave me an assessment.  She referred me to a psychologist.  Luckily, my son and I see the same psychologist  We went to see him.  I told him the story and he offered an assessment.  I decided not to do an assessment, because I was going to purchase a really fancy assessment from Emory that would tell me about multiple possibilities.  I worry about the possibilities, because I live with a diagnosis.  So, the hour passed and he called me in.  Turned out the light in the bathroom at school was flickering and the boys collectively decided there were ghosts in there.  They discussed fiction and fact.  So, I realized after all that that the story is so much more important than the diagnosis.  I was freaking out for weeks about this for no reason, but what a great halloween surprise to find he is healthy!  I'm glad there are psychologists out there with a sense of practicality.

Happy Halloween!

What is Trauma?

Some people don't simply understand what trauma is.  In a basic sense, it is when a person is "overwhelmed by events or circumstances and responds with intense fear, horror, and helplessness."  Examples appear in the tree on this infographic:  http://www.thenationalcouncil.org/wp-content/uploads/2013/05/Trauma-infographic.pdf

My trauma started at age 7, when my family moved to Atlanta.  This is where I began to spend Sundays with my grandfather, whom we would come to learn was a pedophile.  As an already shy and introverted child, this experience hit me like a brick wall leaving me more introverted and scared of people.  The trauma didn't stop there, it continued in finding unhealthy relationships with others around me.  I felt like I was marked and trapped in a personal narrative of shock.  There are some events that changed this:

a) I engaged in a therapeutic relationship with a therapist.
b) I began to draw my feelings.
c) I began to journal my feelings.
d) I took medication when a mental health condition struck.
e) I learned how to seek healing relationships to replace the unhealthy ones.
f) I stopped drinking.
g) I found Georgia peer support and acquired new friends and skills (www.gmhcn.org)
h) I sought connection with other survivors to advocate and discuss trauma.
i) I started to create skills resources and share what I have learned.


We do not have to be silent, we can come together to share stories of healing and change the narrative.

You Made a Difference Friend, May You Inspire Others:

I sent this to 3 newspapers and not one had time to write a story on friendship.  So, here I will publish this tribute to an amazing woman.   

North Augusta, SC, September 19, 2016:  Today Miriam Culbertson will be remembered at Posey Funeral Home in North Augusta.  She has been my friend since I moved next door to her.  In 2003, I woke up in my home and thought it was filled with gas, I could hear the media outside calling me a witch, and I was sure someone was trying to poison me.  I fled to my car with my dog.  Miriam saw me and tried to give me a hug.  I told her to stay away, as I thought she had ill intentions.  I ended up driving up ad down the East Coast in fear of an entity I couldn’t find.  Then 4 hospitalizations later, I came home and Miriam was still there.  She stayed by my side when illness struck in a way that the younger people in my life just did not.  She was a rock, always there for me even when my career that evolved in peer support took me to Nebraska.  She always was on the other end of the phone till now.  I miss my friend dearly, but want to encourage people in the community to continue to reach out to people with mental illness in the community.  You can make a difference just by a conversation and being there.  Sharing her faith and love was such a precious gift and I am stronger because of her love.  Reach out and be a friend to someone struggling.  A friend makes the difference.  Miriam speaks at the end of this video I made for a “What a difference a friend makes” video contest years ago: https://www.youtube.com/watch?v=--zGp7rpWuY&app=desktop

Miriam Culbertson and Carol Coussons de Reyes, 2004, North Augusta

It was ridiculously expensive, but I'm glad I took care of me.

Leaving Nebraska was a painful decision that took months.  I could feel things changing with the new administration, because they moved my job to the hospitals, told me I would be working with sex offenders, told me I would have to reapply for my job as they reclassified it, and I was informed that I would be moved to an office that was housed above sex offenders.  All this was too much and asking me, as a trauma survivor, to serve sex offenders was not working at all.  I became very ill and went on medical leave.  

Georgia, my family, and my friends in Georgia were in my heart and I decided to be closer to their love while I was on medical leave.  I healed and I decided enough was enough.  I decided to stay in Georgia and it was a great decision, because I landed in a fabulous place of employment after months of waiting.  I'm so happy today and I am glad I made this decision.  It was an expensive decision, but I am so proud of me for taking care of me.  I knew my value in the larger market of employment, it is a niche market, but I truly love the work of assisting the people with behavioral health conditions to live lives of resilience and recovery!

A Union of Hope Play at Centennial Olympic Park

The world is spinning with trauma and pain.  Once in a while, we need to stop and listen to the voice of the trauma survivor.  Trauma takes many forms, it can be real life in the now violence and it can result from a history of violence that a culture remembers.  We have places that give voice to Georgia's trauma, like the amazing history of Martin Luther King, Jr and other civil rights leaders.  We do not have a place I can readily recognize the current in the now voice of troubled and traumatized citizens.  The Dalai Lama was welcomed at the Centennial Olympic Park years ago to speak to the importance to compassion.  That stage would be a wonderful spot to dialogue on modern issues and theater is a great way to get people's attention.
I will never forget the theater of the protest of Martha Burke at Augusta National Golf Tournament.  There was a big pig that said, "While CEO's play, women pay."  There were puppets representing characters of the day.  As a participant, I thought it was a little over the top, but the truth is that it spoke to what many women were thinking.  It was a grand way of communicating a group's truth about exclusion of women.
We are in desperate need of dialogue in America and perhaps theater could release the pain and create symbols of healing for people.  We also need to practice the skills of compassion in relationships publicly.  Like, what if we had a hug in or teddy bear exchange after a play on the trauma of the moment that people are feeling.  There is much work to do to heal in America.

Peace and Love,
Carol

Keeping Hope Alive

As I quit my job, I didn't really think I would be landing in a world of poverty.  I haven't been poor since college, and even then I fluttered within because I found a job I hated that kept me alive.  This time was different, because I landed my whole family in poverty.  I believed I must follow a path back to Georgia and found unemployment without even unemployment benefits.  I learned a lot.  You have less energy, when you are poor for lunches and coffees with friends because there is no flow.  When you have food stamps, people judge your comments as you walk through the checkout line.  Some pharmacies, don't include the handy little cups for your medicine when your child has medicaid.  When I dressed the part of poverty, I felt it deep inside.  I had to believe in myself and not dress the part.  I had to believe that the job was coming and do everything in my power to make that happen, despite the odds of a middle manager flood.  I went to vocational rehabilitation to get counseling, because I didn't want to leave any stone unturned that could change the reality I was living.  My family's poverty ends on Monday and I am overjoyed that I was able to keep hope alive.  Everyone should have savings, understand a budget, understand how much you spend, and pursuit education with vigor.  Most of all, we must keep hope alive for change.  

Hope and Choice

A colleague of mine has recently passed that I would consider part of the anti-psychiatry movement.  He spoke to the horrific abuse of the system, but never spoke about when it worked right.  I guess it never worked for him and this saddens me.  I read horrific stories in the paper and I know that things can go absolutely wrong.  
At the same time, I have experienced success in my life with lots of wellness tools, which includes modern psychiatry.  When I am unmedicated, I become angry and entrenched in my trauma and the narrative becomes larger than life.  The stress is absolutely unlivable and I am sure I would have a serious physical illness.  So, I am thankful for modern medicine that includes psychiatry.  I am thankful for clinicians.  I am especially thankful for trauma-informed clinicians and they are challenging to find.
So I guess if psychiatry isn't working for you, I would encourage you to do what is right for you.  I used to believe that recovery for me would involve living without medication and I simply know that is wrong for me.  I have a high quality of life, thanks to modern psychiatry and clinicians in addition to a host of other wellness tools, like peer support.  I encourage you to keep hope alive and seek what works for you.