My daughter is 19 now and was diagnosed with bipolar disorder with psychotic features at the age of 16 and then later borderline personality disorder. She’s tried to die by suicide twice and has been hospitalized 7 times for self harm.
Just over two years ago I was gloriously naive. Before the police knocked on my door the morning of May 31st, 2014, there was a lot I didn’t know.
I didn’t know my daughter had a serious mental illness. Morgan had always been a quirky child. Extremely intelligent and intensely creative, people often said that she “marched to the beat of her own drum.” Although (in retrospect) there were a few red flags over the years, we were continuously reassured by her doctors and educators that Morgan was well “within the range of normal.”
There is some sentiment among advocates for persons with serious mental illnesses like schizophrenia and bipolar disorder that movements like Mental Health Awareness Month and fighting stigma is a waste of resources because it doesn’t help get treatment and resources to the most severely mentally ill. I disagree. I think awareness and stigma fighting are an important component in getting those people the services they desperately need. I have four reasons why.
Last year I wrote a post about attending Healthe Voices 2015 in Jersey City. It was an amazing new event hosted by Janssen Pharmaceutical and Everyday Health that brought together 60 online advocates across many different conditions to help us strengthen our advocacy work.
This year, I was honored to be asked to be on the Advisory Panel to help create Healthe Voices 2016. I, along with seven other amazing health advocates, worked with Janssen to put together the program for this year’s conference. On April 15, 2016, nearly 100 online advocates came together in my hometown of Chicago.
On this ninth anniversary of the tragic loss of 33 lives at Virginia Tech, please also remember:
Seung-Hui Cho Was diagnosed with mental illness before the age of 18.
Seung-Hui Cho’s family tried to keep him in treatment after age 18, but were unable to even know if he was in treatment because of HIPAA law.
Seung-Hui Cho sought treatment on his own while a student at Virginia Tech.
Seung-Hui Cho’s Doctor tried to have him committed as an inpatient but was denied by a Virginia judge.
Call and write your congressperson. Implore them to co-sponsor HR 2646.
This Friday I will be at Healthe Voices 2016 in beautiful downtown Chicago! Healthe Voices is a weekend conference that brings patient and caregiver advocates for many different conditions together to learn how to improve our advocacy. I attended the inaugural conference last year in New York and it was amazing to meet different advocates and learn from them and from experts in many different topics.
This year I’m honored to be on the advisory counsel, helping Janssen and Everyday Health create this amazing event. I will be tweeting throughout the weekend, live from the conference, so if you’re on Twitter, follow me here and learn along with me!
Note: While I am compensated by Janssen for my work on the conference, all my opinions and posts are my own and are not influenced by their sponsorship.
I painted this stencil over the top of Tim’s closet when he was eleven years old. That was the year everything changed. Tim was officially diagnosed with schizophrenia. He attempted suicide. He had two inpatient hospitalizations. Tim has always loved Superman, and Tom has always loved REM, so this stencil was the perfect expression of what Tim loved, sung by a band his dad loved, and the sentiment I hoped he would remember.
Today, Tim and I are painting it over.
From the Washington Post article, on the incident this week of shots fired near the Capital:
Authorities identified the wounded suspect as Larry Russell Dawson, a minister from Tennessee. The 66-year-old Dawson previously was arrested in October in the District after he allegedly disrupted Congress by shouting that he was a “prophet of God.”
Yet, they won’t pass HR2646 out of committee, a bill that would have helped ensure this man was in treatment.
I…..I just can’t understand.
How many more people have to die? How many more prisons will we have to build to hold those that should be treated instead? When will politicians care?
They didn’t care after Tucson.
Or Virginia Tech.
They didn’t even care when one of their own was stabbed by his own child, hours after being refused a bed.
Years ago I worked for a school who only served kids with moderate to severe disabilities, primarily Autism. Part of our training was a series of lectures from other health professionals, support service agencies and other assorted individuals who worked in the field. One of the trainings was titled, “A Parent’s Perspective.” It consisted of one brave, war weary mother explaining in great detail how she (any most of the other parents in our school) managed their daily lives. Her lecture was by far my favorite. As trained professionals we cared for the children, but at the end of the day we got to go home. When the student reached the age of 21, they left…forever. Every year we got a three month break. 100% respite from the screaming, biting, clogged toilets and day glow orange Cheetos covered fingers.
But the parents? They were on call for life.
You may have read the story when it happened. On May 22, 2015, J’Aire Lee, three years old, was found dead on a swing in Maryland. A neighbor called the police and said his mom, Romechia Simms, had been pushing him on the swing for “an unusually long period of time.” That time turned out to be two full days. J’Aire’s cause of death was found to be hypothermia and dehydration. Romechia was taken to a psychiatric hospital. The death was ruled a homicide. Romechia’s mother, Vontasha Simms, said her daughter had a history of schizophrenia and had been hospitalized twice in the past few years, but all her pleas to social services and other agencies to help her daughter we met with apologies or silence. Romechia had to face her son’s casket – and the knowledge that her actions caused his death – at his funeral. Then Romechia was charged with manslaughter and child abuse and incarcerated. She spent nearly three months in jail before her family could fight to have her bond lowered, then gather the funds to bail her out, just a few weeks before Christmas.
Two days ago, Romechia Simms stood in front of a judge and accepted a deal where she pled guilty to involuntary manslaughter in J’Aire’s death, and required her to stay in treatment and take her medication, and be monitored for five years to ensure she is doing so. She is living with her mother, Vontasha, who I know will ensure Romechia stays in treatment.
But Vontasha is doing more than caring for her daughter. She is taking the pleas that fell on deaf ears before her grandson’s death to the Maryland State Capital to try and ensure that services are available to the families that need them, and to ensure that no other grandson has to die, and no other daughter has to live with the fact that her mental illness killed him. It’s called J’Aire’s Law, and Vontasha posts on her Facebook page every morning about her meetings with county and state officials and her phone calls and petition drives. Vontasha is one driven lady.
(image credit: Washington Post)
She’s driven to get enough psychiatric hospital beds in Maryland to meet the demand. She’s driven to get the law changed so that insurance companies can’t kick someone out of the hospital who is clearly unstable, but no longer an “imminent threat.” She’s driven to get family members of adults with mental illness access to their treatment plans and doctors. I bet she can do it, too. I hope her work rubs off at the National level, so we can get House Bill HR2646 passed.
Vontasha has a petition where supporters are signing and showing their support for J’Aire’s Law. I’ve signed it. I hope you will too. Because no one should have to endure what Vontasha, Romechia, and J’Aire have endured. Not when treatment is so effective.