Dear America Mental Illness is Not the Problem

broken window

Dear America,

Following the most recent mass shootings in Gilroy, CA, El Paso, TX, Dayton, OH, and Brooklyn, NY, there was a renewed focus on mental health. Lawmakers, including the President, implicated mental illness for these acts of hatred and terrorism. Numerous studies that show mental illness accounts for a “relatively small percentage” of violent crimes.  Doctors repeatedly assert that the link between mental illness to mass shootings is unfounded. Nevertheless, politicians and swaths of Americans continue to blame the mentally ill.

Mental illness is a broad spectrum and includes disorders such as depression, anxiety, and schizophrenia.  When you point the finger at the mentally ill, you are looking to one in five Americans.  You include coworkers, friends, neighbors, veterans, and upstanding members of the community in your indictment. The scapegoating conflates mental illness with hatred, indifference towards others, intolerance, and bigotry.

When you are speaking about the mentally ill, you are talking about me.

I am a loving mother, a devoted wife, a PTA parent, a dedicated volunteer, an educational advocate, a writer, a contributing member of my community; and, I am mentally ill. I have suffered in private for more than half my life, afraid to speak openly due to the stigma surrounding mental illness. I can’t afford to be silent any longer. My fellow Americans are dying from mass shootings in record numbers. That is more terrifying than the stigma I face in my announcement. You are talking about me, America, and I will not hide nor internalize the widely held belief that the mentally ill are violent. I can only hope my disclosure will help others.  

Outing myself as mentally ill opens me up to stigma.  As a person with mental illness, I am more likely to experience job discrimination or encounter questions about my parenting abilities.  I am more likely to be seen as unpredictable or potentially violent, just for having disclosed my mental illness. When, in reality, none of this is fact or even based on reliable statistics. As one of the more than 44 million adults who have a mental illness, I am 2.5 times more likely to be a victim of violence than others. Millions of Americans go without the treatment they need due to stigma and lack of mental health resources. I am one of the lucky minority (40%) with mental illness to receive mental health services. Increasing mental health service availability is much needed, but it will not solve the problem of stigma. We are stigmatized, victimized, and scapegoated because America cannot look itself in the mirror. It is this very scapegoating and indifference towards others that is at the heart of the issue.

If it is not the mentally ill as scapegoats, then it is the immigrant, the Muslim, the person of color, the LGBTQ+ person. Indifference, intolerance, and hate are rampant. These are the drivers of violence. As Americans, we are ever more isolated. We retreat to our bubbles of comfort scrolling through our single viewpoint feed. We rail against the other—that with which we do not identify. We invest in blaming others because it is too difficult to acknowledge the seeds of indifference, intolerance, and hate that lie within us. When we blame mental illness, we make the seeds “other than” and reassure ourselves that we are not part of the problem. We erroneously think if we can treat the mentally ill, we can eradicate the threat. Nothing could be further from the truth.  

Until and unless we confront the hatred, intolerance, and indifference that resides in each of us, no matter how small, we will continue to seek scapegoats. We do not want to accept that we may, no matter how seemingly different, have something in common with a mass shooter.  At the root of hatred, intolerance, and indifference is fear. We are being instructed to fear the wrong thing.  When we fear the “other,” the “not me,” it breeds stigma, discrimination, and violence. The cure is to face each other, get curious, reach across the aisle, and learn more from those with whom we hold different viewpoints.

Without each of us stepping up to do our part, confront our fears, and value those who hold different viewpoints, we will never reach a solution. Lawmakers have proposed gun restrictions, background checks, video game reform, expansion of mental health treatment, or a combination of the above as solutions.  Nevertheless, these are only stop-gap measures if we do not confront our ills.  

We must, above all us, learn how to care for one another again; even if we disagree. The rest will follow.

Sincerely, 

A Concerned Citizen 

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On Never Enough

The sounds of “The Greatest Showman” reverberated off the windows of the car and her tiny voice sang along. It was one of her new skills and, by far, my favorite–she is a beautiful singer to boot. I took solace in the melody and her voice as we continued on our way to Boston and her speciality appointments.

The juxtaposition of her blossoming development and the fact that we were traveling to urgently scheduled appointments for difficult issues related to her complex medical diagnosis did not elude me. Our life together is this constant dance of uncertainty and fear riding along side simplicity and gratitude.

One of her favorite songs began and she sweetly sang along “never enough, never enough…” My mind wandered and weaved forward to the appointments of the day and the Herculean task ahead and back to the heartbreaking texts I received in the morning from a fellow mother parenting a child affected by the same rare genetic disorder as my daughter. I tuned back in to her singing.

All the stars we steal from the night sky
Will never be enough, never be enough
Towers of gold are still too little
These hands could hold the world but it’ll
Never be enough, never be enough
For me, never, never”

As I listened, I landed firmly in that space between fear and gratitude. The space is the vacuous home of “never enough.” It is the stark reality of my life raising a child with a rare genetic disorder and extraordinary need. All the moments we stole that we were never meant to have, all the money it took, all the change we made in this world to make it a better, more accepting place for her will never be enough for my sweet child.

It will never be enough to delve deep into her genome and repair the small deletion that sentenced her to a lifetime of complex and immense struggle. A mother’s number one job is to fix all that ails one’s child and I cannot. I will never be enough. We are further stuck within a medical system that is woefully unequipped to handle her needs now and in the future.

Nevertheless, we drive on–this time to another appointment for a Hail Mary treatment. There will be many more. The future will surely hold more therapies, new medications, treatments, clinical trials, and we will weigh the pros and cons of all. We will never stop because she is more than enough.

The song shuffled and she began to belt out a new tune. I was jolted out of my free fall. She really is the sweetest, hardest working, most glorious miracle; she is more than enough. She is love and my love for her is indescribable. Perhaps that is enough.

Yes, perhaps love is enough. It is what I will fill the space between fear and gratitude. I will fill “never enough” with love.

On Drowning

Drowning is silent; there is no grand cinematic splash, flail, and scream.  True drowning is insidious and deadly. The once confident looking swimmer is suddenly gone with no yell for help and no sign of distress.

I am a fiery, powerhouse mother of two children with disabilities and I feel like I am drowning.  My drowning is as silent and insidious as the real thing. My drowning is slow and it looks well groomed and smells of perfume accompanied by bubble bath; it gets to school on time; volunteers for the PTA; then, arrives at home to face the mountain of responsibility and sinks below the surface into the dark depths.

Do not let my functionality fool you; I feel like I am drowning.

I look calm and cool above the surface while my legs frantically kick below to keep me afloat.  My legs are tired and cramped.  They have been kicking for years–since the day I sat cherry faced (from steroid shots) and smiling at my baby shower pretending to be carrying a healthy infant.  No one, save for a select few, knew the baby swimming around in my belly had a body riddled with tumors and would be born with the rare genetic disorder, Tuberous Sclerosis Complex (TSC).  I was drowning in grief, in fear, in appointments for myself and my baby; and, I was excited to meet my growing baby, surrounded by friends and family celebrating her.  A piece of me slipped below the watery depth that day.

My drowning is piecemeal.  It has happened bit by bit over the years.  I have lost pieces of myself to the crushing responsibility and lack of resources.

Today I tread tirelessly, a child in each arm, to keep us all above the surface.  I feel the tug of riptide–the school calls, the emergencies, the medical crises, the new diagnoses, the day to day battles, the behaviors, the therapies, the endless appointments. It threatens to pull us all under in totality and I tread on because I refuse to let this life claim my family. I am buoyed by my love for them–by our love for each other.

I am tired and I need help; and, I will continue to tread on. You may not know all that is happening below the surface. I look like I can do it all but one cannot tread water indefinitely without support. And this world is just not built to support families like mine–the multitude of need is far reaching. The cost thus far has been high. The truth is below the surface there are pieces of me slipping away bit by bit while I wait for someone, something to help.

Nevertheless there is a bothness to this world that is mysterious. I look the model of strength, calm, cool, collected togetherness while I feel like I am drowning. I am losing pieces of myself bit by bit while I gain new perspectives on this wide and wonderful world I would never be privy to without my beautifully complex children. The love, pride, and joy I hold for my family gives me great strength and requires strength from every fiber of my being. I may feel like I am drowning and I am kept afloat by the hope I hold for our future–no matter how small it may be at any given moment.