ONE GRATEFUL MOM

It’s the second Wednesday of the month and a wave of peace surrounds me.  I am happy, simply content.  No, I haven’t hit lotto or retired, but it seems to always be the best day of the month for the past year.   You see, my son gets his injectable medication on that day, a miracle for a man of 33 years old, who has suffered much and yet still has no insight into his mental illness and most probably never will.

 

Years of watching him take meds, dreading the climb upstairs to his bedroom with the pills and water, his anger and resentment, the name-calling, and worst of all, the look on his face as he swallowed what he perceived to be poison from his mother is gone for today.

 

The threat of another assisted outpatient treatment order has been enough to keep my son diligently taking an injectable medication. In fact, he has moved out of my home, works 3 days a week and is more independent than ever before.

 

It is not perfect.  The schizophrenia remains, but with the injectable there is much less angst and fewer symptoms. Sadly, he is only agreeing to the treatment until the “AOT” people are off his back.  But without his first assisted outpatient treatment order, he would still be battling the demons on the walls, and the streets, believing they were real and that I was somehow behind his suffering.  He attends no programs since for someone with anosognosia (lack of insight) they simply made him angrier.  How could he listen anymore to the lies they told?  Why did he have to waste 5 years with people who are sick and need help when he is healthy and educated?  No, despite their dedication to help those with mental illness, PROS programs did not help my son’s anosognosia.  There he learned to lie about having insight so that he would never have to return.  What worked was an injectable medication administered once a month.

 

But today I’m not thinking about any of this.   It’s the second Wednesday of the month and I am so grateful.  No longer do I dream about his successful business career or the family he might have had.  But, make no mistake, I still dream – a simple one - that he goes to the doctor and gets the injection because with it, he has a life.  With that injectable, he smiles and hugs me.  I know it won’t last, but for today I am one grateful mom.

THE EMOTIONAL ROLLER COASTER

Yes, after rereading my previous entry, I realize it was a bit harsh.  Perhaps I should change the title to One Angry, Hopeful, Desperate, Grateful Woman- those adjectives would explain better the feelings a mother of a young adult with mental illness experiences from moment to moment, even after you’ve done the support group run and even educated yourself enough to teach others.

But all the support groups in the world don’t matter on the days when you look at everyone else’s children getting married, having children and living the life your child deserved. The truth is this. There are days and then, there.are.days.

Some days are filled with sadness, others anger and then there are days that there is a certain level of acceptance despite the fact that I know in those moments, I'm deluding myself into believing I feel acceptance.

I don't. I can't.  I won't. I have to believe things can change. I have to hold on to hope. 

For years my own family told me to “Get on with life;  Accept it.  You can’t change his brain or his life.  Well, yes, they were half right.  I couldn’t do anything to cure him.

But I could be his advocate.  And perhaps that is what this blog is about.  I do love people, but boy can they run when the word “schizophrenia” is mentioned.  My own son runs from the archaic mention of the word.

I’m not sure if anyone is even interested in reading this.  But I will be honest- I won’t sugarcoat our nation’s mental health care dilemma.

I can’t because I have lived it.   It’s not all sad and tragic, but it’s hidden and we’re out here, living the nightmare that could be changed if enough of us joined together.

We can start by having meaningful conversations. We can all get on the same page. Replace stigma with empathy. Insist on research. Stop using jails to house persons with mental illness because there is no other option.

Persons living with serious mental illness are in an impossible situation. They have been betrayed by a vital organ. They are no different than someone whose liver or kidney has failed. Except they are. Livers can be transplanted. A kidney can be removed.

We can't transplant brains, we can only hope for breakthroughs. Our greatest hope lies in the hands of the research community. So, I continue to advocate on all fronts. For better care, for better research, for better understanding.

It's time. Please join me.

12 ANGRY MEN OR ONE ANGRY MOM

When I was in high school, I read the play 12 Angry Men.  I was amazed that one man could cast doubt on what appeared to be a clear case of murder.  But I was unsettled since there never was an outcome, a solution, a verdict…..Oh, yes -everyone was talking but that’s all that seemed to happen.

Twenty five years later I find myself 1 Angry Woman and although I always prided myself on my optimism, I must say I am losing ground. You see, I’ve always been a patriot, daughter of a WWII veteran, machine-gunned by a Nazi who lived to tell about it.  My entire career has been teaching the US Constitution and its brilliance as a government.

I’ve had many things in my personal life to be angry about.  But they are linked to my choices, poor ones at best.  Our nation’s mental health system, however, can be blamed on no one, other than apathetic baby-boomers who simply may be fortunate enough never to have encountered it.  That's why my angry tonight.

I’m no Glenn Close who can rally Hollywood to make commercials for advocacy.  I admire her work which we need, but frankly I live the life, without the awards, money, or green cleats that may be breaking barriers one day.  That sounds harsh, but it’s true.  If I could get on a commercial, would I have your attention……I can do that, you, know.  I’ve captivated the minds of thousands of teenagers and instilled a love of their nation, not an easy feat.

But for today, I’m just one angry mom disgusted with a system that has failed her 32 year old son, stripped his dignity, and tossed him aside because he has a disease that people now talk about but do little else.

WHO'S LISTENING??

I have been teaching American History for 30 years.  Six years ago I wrote and began teaching a course called "Democracy in Action."  Students choose a cause and advocate for those in need.

It is said that mental health is our "last civil rights movement" and each year my students have chosen to participate in this last civil rights movement. They form a team and participate in the local National Alliance on Mental Illness (NAMI) walk. They design banners, create signs, raise money, sell t-shirts and they contact our elected officials seeking their support.

They are untainted by politics and posturing. They still live in the world of idealism. Their enthusiasm is contagious and each year, I watch with pride as they pick up the ball and run with it. And each year, I watch, bitterly disappointed at the response of our elected officials.

It is terribly frustrating since the students and I have yet to have a representative from our government at the walk.  Each year we write, call, and email our state and federal representatives and to date, we have only received automated responses. This year, the walk coordinator received yet another "so sorry, we're busy" response and included in the message was a note.

The legislative assistant wanted to "flag" the walk coordinator. She noted that she received several calls and emails from my middle school students asking one of our Senators to come to the walk. She continued by stating she was glad to see so many active young people involved but “she wanted to make sure the coordinator was aware this was happening because it is unusual to have so many kids call the office.” She also explained that she would be happy to acknowledge my students with a letter, but felt it would be best to check with the walk coordinator before sending anything.

Forgive me but how am I as an educator to show these young Americans that their voice counts? An overwhelming number of requests were made to an elected official, and the response was not to them, it was not to the school (the students did identify their school) but the response was to ask a third party if the official should respond? This is not democracy in action.

My students will be voting in just a few short years and I have explained the sacrifices so many people have borne for their freedom.  They seek to understand as much as they can about the reason why they are walking. They have quickly come to the realization that without the attention of those we elect, many people living with mental illnesses lose that very freedom to live the lives they deserve.

My students see the system is broken. By the time the school year is winding down, they have developed a solid foundation and a deep understanding of how to be effective advocates. They learn that advocacy can take many forms and seeking government support is an important aspect to any efforts.  And yes, we all live busy lives, but forgive me if I ask -What is more important than showing a young man or woman that our democracy does in fact work? 

Perhaps it is not well known by the masses, but anyone involved in advocacy surrounding mental illness is acutely aware that mental disorders are the leading cause of disability and strike our youth just when they are beginning their lives.  I believe Rosalyn Carter said it best," We have been given many gifts as a nation...We Americans think of ourselves as decent, generous, and compassionate people, & for the most part we are; yet we treat a large proportion of our own population as though they are second class citizens, undeserving of our help, our resources, & our understanding."  

I realize the schedules of our elected officials may be full, but someone, somewhere has to take the initiative and find the time, make the time, to represent those who are too ill to represent themselves. The Port Washington students’ tenacity and the time and energy they take to share their concerns is laudable.

I suppose, since they are still minors, their requests are looked upon as nothing more than a nuisance. One need not read too deeply between the lines in the correspondence from the Senator's office to draw that conclusion.

I am doing my part as an educator to keep my lessons fresh. I am constantly seeking new methods to bring history to life in ways that are relatable to a new generation. They are being taught that our system of democracy means there are no barriers between us and our elected officials.

Automated replies, having their messages intercepted or learning that their messages were diverted back in the form of a "heads up" because of the unusually large volume of calls from very young people is disheartening.

At the end of the day, it matters that my students know they are being heard, their concerns and requests are being acknowledged and most importantly, that their democracy does work in the way they are being taught, which is what was intended by the Framers of our Constitution.


(Editor's note: This post was reworded from a letter written in response to yet another disappointment from yet another elected official for the 6th consecutive year. I will be seeking the help of anyone interested in this issue to spread this message in as many social media platforms as possible, specifically to Senators Gillibrand and Schumer (D-NY).)