“Mom, voices keep telling me to kill myself…” the first words that hit me in the gut and screamed that something was seriously wrong. I always knew as she was growing up things weren’t always ‘right’. Unusual fits, endless crying, maintaining below average grades in school, antisocial. I questioned her teachers and the doctors but everyone always seemed to think I was off-base for speaking about my own child this way.
My child has never even raised her voice in school, let alone harmed a single soul, but her teacher ran from her when Raven told her she felt an episode coming on.
By the time she was in the seventh grade she had been dealing with auditory hallucinations, voices of men saying mean and hurtful things to her, encouraging her to kill herself and others (mainly siblings). I had no idea. When she came to me over a year ago, completely broken down, she talked to me in great detail and we cried together. I made the decision that night to have her admitted to a behavioral health center for evaluation, unaware it would be two weeks before they let her leave.
1 in every 100 people will experience schizophrenia.
Since then, she has been inpatient once more, and at the all-day outpatient center several times. My daughter has been diagnosed with schizophrenia, major depressive disorder, and anxiety. She experiences auditory hallucinations, visual hallucinations, paranoia, long periods of time where response and emotion is absent, but worst of all she cries because she wants to be better.
People with schizophrenia die 15-20 years earlier than average, the number one cause of death for people with the illness is suicide.
There is no cure for schizophrenia, but there is hope. With the proper medication and therapy it is manageable. When Raven is having an episode we start by talking about it, then we may take a walk, or turn on music and dance, or color, anything to really distract her from her own mind. These episodes typically wear her out and are more likely to frighten her than to anger her.
Schizophrenia is not a split personality disorder.
While at school this year, as an episode was beginning to take place, my child quietly informed her teacher, who is aware of the situation, and the teacher RAN from her! She literally ran away and called for backup. From my child. Who has never even raised her voice in school, let alone harmed a single soul. I understand it is the lack of education and understanding of this dirty word “schizophrenia,” and I plan to change that. Plus, I’ll be damned if all the work I put in teaching my kids to have zero shame about who they are, takes two steps back because of ignorance.
Jack Kerouac was schizophrenic, and he’s one of my favorites of all time, so…
This precious, beautiful, and brave child of mine. She doesn’t stand on street corners and talk to herself, or sit in her room and plot mass shootings at her school. She does gymnastics, and her makeup and selfies. But in the blink of an eye, a psychotic episode can occur. For her, it is a voice, or voices only she can hear, they are loud and mean and encourage her to harm herself, and put her down, and sometimes, hurt others. Aside from these episodes, she has major anxiety, she believes we can hear her thoughts, that everyone is staring at her and judging her, and she often cries. BUT she has a team of doctors and therapists that have armed us with great coping skills and knowledge.
Schizophrenia is not a death sentence, in fact, most people living with the illness, who have access to proper treatment, live total and completely normal lives.
There is help for her, but it is a very lengthy process. Our insurance company fights her. Doctors continually to lessen her treatment. They have even now hired a third party to evaluate every appointment to assure them it is necessary. Otherwise, apparently, our insurance is not obligated to pay for the visit.
It is true this country needs healthcare reform, and most certainly mental health care reform. Without a doubt, if my daughter didn’t receive the proper care, I might be typing a much more grim side of schizophrenia to all of you right now.
People with schizophrenia are fourteen times more likely to be a victim of crime, than a perpetrator.
While on the topic of healthcare, I cannot leave out the fact that unlike so many thousands of mentally disabled people, my daughter is in remarkable hands at KU Med. This place right here is our home away from home. We literally have a team of Doctors that treat every individual need she has. I know how lucky we are, I know in this country the care she is receiving is a luxury, and that makes me really heart broken.
Despite what the news tells you, my child is not dangerous. She is far more likely to be victim to a crime than perpetrate one. She understands and manages her own needs, but she shouldn’t have to do this silently. This country needs more than healthcare reform. Raven should not be made to feel ashamed of how she was born. She should be proud of all she has accomplished to keep herself safe as I am. We need to grow awareness and compassion. We need to end mental illness stigma.
By Shiloe ShoeMaker & family
**Note from The Publisher**
Earlier this week I saw my friend posting about her daughter on Facebook. What struck me was a post in which she “warned” her FB friends that she was going to be talking about schizophrenia. It felt wrong for me to see racist remarks or bullying remarks with no similar disclaimer. Why did those people not warn us what was going to hit our news feed?
I have known this mother since she was in middle school. She was there for me on many occasions when I was dealing with racism, poked fun at, bullied/threatened– she stood up for me. She was popular for all the right reasons. Long before there were anti-bullying campaigns, she shut people down. I went into middle and high-school without any stigma or heavy burden of racism because she chose to stand for me when I could not. Additionally, I have a family member who has Schizophrenia. I suffer from Severe Anxiety Disorder which shuts my life down on occasion.
My decision to pull this together was very personal. I hope you aren’t just “aware of” mental health stigma. My hope is you will do what this mother did. Long before she had children and before any of us had Ghandi in our head saying “be the change you want to see in the world,” she was that change.
Let’s start changing. Start with ourselves. Pay it forward- Shareen Mansfield