Emotions are difficult to control. You think you can keep them in check and most days you can, and then they rise up.
Seconds before I was scheduled to testify Tuesday before the U.S. House subcommittee on Oversight and Investigations at a public forum entitled: “After Newtown: A National Conversation on Violence and Severe Mental Illness,” I felt my emotions taking hold. Tears began welling in my eyes and my voice started to crack.
I was angry at my lack of self control.
It wasn’t because I was having stage fright. I have told my story – about how I had tried to get my adult son help when he became psychotic and was turned away from a hospital emergency room — hundreds of times and to much larger audiences without becoming distraught.
I was overwhelmed. I only had three minutes — maybe four — to tell more than a dozen members of Congress about an event that had totally changed my son’s life and my family’s. What could I possibly say that would express what I have learned about mental illnesses, my son, myself and our mental health system during the past ten years – traveling to 49 states, touring dozens of programs and meeting hundreds of individuals little different from my son and me?
Many of you had written thoughtful comments for me to share with Congress and I did. I delivered them to the subcommittee staff for distribution.
What could I now add?
I had been invited to tell my personal story. The forum’s sponsors, Reps. Tim Murphy (R-Pa.) and Diana DeGette (D-Co.) had invited five experts to provide them with specifics about mental illness and federal programs. Along with Pat Milam, whose son committed suicide, and Liza Long, who gained notoriety when she penned a blog called “I Am Adam Lanza’s Mother,” I had been chosen to humanize the issue.
As soon as I began, I realized I would have difficulty getting through my statement. I was disappointed in myself. I know that the show of emotions can be powerful, but I also realize that it often makes listeners uncomfortable and diminishes the speaker’s message. What I was saying was important and I wanted them to hear every word not focus on my inability to keep my emotions in check.
I explained that Virginia’s “imminent dangerous” involuntary commitment criteria had kept me from getting my son help before the law was changed. I want my son’s civil rights protected, I said, but I added that the ”dangerous” criteria that is in every state’s commitment criteria is — in my opinion — a foolish standard. I told the subcommittee that reforming commitment standards will not do any good if there are no meaningful community treatment services available. I added that while my son had suffered four major breaks and had been tasered twice by the police, he was doing great today because he finally got the help that he needed.
Because of my background in journalism, I understand the need for sound bites and I ended with this one:
” We tell our sons and daughters — oh, you may be sick but we are not going to help you until you become dangerous. And then when they become dangerous, we blame and punish them. In that scenario, you tell me: ‘Who is the ‘crazy’ one?’”
At one point, I had to stop my testimony because I had become too emotional to continue. Pat Milam did a much better job than I did delivering his unscripted remarks even though he began by saying that he was not a public speaker. He kept control, was specific, and — most important of all — he targeted barriers that Congress can do something about, such as modifying HIPAA laws. (States control involuntary commitment criteria.) Pat didn’t pull punches. He said the doctors who treated his son hid behind HIPAA and really didn’t want to talk to him or his wife, Debbie.
Liza Long gave an eloquent presentation via a television screen from her home. (The subcommittee did not have adequate funds to fly witnesses into Washington. Pat paid his own expenses to get here.)
I had testified twice in front of congressional committees but this forum was much different — and better! In the past, one or two members would drift into the committee room, make a statement and then hurry off. No one paid attention. But at Tuesday’s hearing, I counted more than a dozen House members sitting at the table where we’d gathered and everyone of them was paying attention, and most asked questions.
I was especially impressed by Rep. Bill Cassidy, (R. LA.) a medical doctor, who grilled me about my involuntary commitment comments. It became clear that Dr. Cassidy understands our system and hopes to find ways to improve it. Panel member Dr. Harold S. Kopolewicz, president of the Child Mind Institute, also impressed me with his recitation of statistics about the need for child psychiatrists in the U.S. and his insights into the problems that children with mental disorders face.
I had to grin at one point because a staff member handed a sheet of paper to Rep. Kathy Castor, (D-Fl.) who was sitting next to me. The top of the page contained a warning. It said that Dr. E. Fuller Torrey, the founder of the Treatment Advocacy Center, was going to attack SAMHSA during his remarks. A list of positive things that SAMHSA does was printed on the fact sheet for Castor to cite if Torrey attacked it. He did and she used the sheet to respond.
That was the only bit of politics that I noticed being played out.
I became emotional again during the one minute that I was given for closing. I had tried before the hearing to get a person with mental illness appointed to the panel. I had hoped the subcommittee would invite my son because he is doing so well. Unfortunately, the subcommittee decided against it, but promised there would be future hearings. I hope so. I was told that the subcommittee also decided not to invite the parents of a child who had been murdered by a person with mental disorders. I wish they had invited both because I believe we all need to talk frankly and work together to fix our system.
Regardless, I wanted to make certain that members of Congress understood most persons with mental disorders are just like all of us, only they have a medical illness. I urged Congress to be thoughtful and not hurry any bills into law that further stigmatized persons with mental illness. I was especially worried about laws that require lists of persons with mental disorders to be drawn up and turned over to the police and federal officials, including lists of persons who have never been violent.
“Lists increase stigma,” I warned. “We are your sons and daughters. We are Rep. Patrick Kennedy and Terry Bradshaw. We are not the enemy.”
I’m one of those persons who always thinks about what they should have said about an hour after I said it. In retrospect, there are several points that I wish I had made, several things that I wish I would have said differently. Most of all, I wish that I hadn’t been so damn emotional because I think it made people uncomfortable and undercut the credibility of my message.
On the other hand, if the subcommittee wanted to see how emotional it is for a parent of an adult son with a mental disorder, even one who is doing well, then they saw it. I only hope that they understood that it was not sympathy or sadness or even empathy that I was expressing or seeking. It was frustration. Or as I told the subcommittee:
Don’t tell me that we can’t help people with mental illnesses. I have seen it happen. This is not a problem of us not knowing what to do, it is a problem of us not doing it…All of the pain that my son endured, all of the pain that my family has suffered, all of the tax dollars that have been wasted and all of the fear that my son caused others, could have been avoided.
None of it had to happen.
(You can watch the entire hearing by clicking here. Be warned that it is nearly three hours long. My opening statement begins at 18:07 and my ending one can be found at 2:23:59. Unfortunately, my computer expert son is relaxing on a Caribbean island on a vacation away from the snow and wasn’t around to pull out my specific comments.)
ADDED TO THIS BLOG ON MARCH 9TH
Thanks everyone for your support and very kind comments. My son, Kevin (Mike in the book) and I gave a speech Friday before a local crime commission. It was only the second time that we have appeared together. Kevin spoke openly about his illness, how it felt to be psychotic, why he went off his medications from time to time, and also gave pointers on how law enforcement can interact with persons with mental disorders in a non-threatening way. He was awesome! I wish Rep. Murphy’s subcommittee would have heard him. Hopefully, he will get an opportunity to speak to the subcommittee in the future. He reminded me of why all of us advocate for our loved ones. He also reminded me that most people with mental illnesses can recovery if they are given meaningful services. Bravo Kevin!