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On the flight to see my mom – who winters in warm Arizona – the man seated next to me started to speak about gun control. How there is a “crazy” on every corner, and how the “crazies” shouldn’t be able to get a gun.
What he didn’t know was that he was talking to a “crazy.”
I live with schizoaffective disorder. I know the name seems scary. It is a lonely, difficult and demanding illness, that combines the symptoms of schizophrenia with the symptoms of a major mood disorder. Although arduous to manage, it is a treatable illness. I did not cause it. It is a medical problem, just like heart disease.
Living with a psychotic illness takes an incredible amount of work. Even on medications, most people still experience some symptoms, which can be onerous and intrusive. You can learn strategies to live with these symptoms, but you’re never totally free. I no longer experience hallucinations or delusions, but there is not a day that goes by that I don’t feel the pang of paranoia, the breathlessness of anxiety, the obsessive pull of rumination or the lingering fear of that thick, black wave of depression.
Some days I worry that people are angry with me, and I don’t know what I’ve done. Other days it’s about identity theft and whether or not someone is stealing my mail. Sometimes, I find myself driving in circles because I’m suspicious of the cars behind me. I doubt and I worry and I visit dark corners. I have to check and re-check reality. I must challenge my assumptions and disregard improbable motives. This is what many of us stirred by this illness do.
You’d never know I was experiencing these symptoms. Even my most beloveds were surprised to learn that I’m constantly filtering and verifying my thoughts. I’ve learned to keep my symptoms hidden. It’s a sort of silent suffering. I don’t want people to know. Shame can boil deep. I insist on working, going to school, writing and spending time with friends and family. I insist on living, despite the consistent and relentless attacks. I insist on trying to find light wherever it may be.
I have never physically harmed another person. I have no drive to cause harm to anyone. In fact, I work hard at being a good, kind, open-hearted person. Yet, somehow, I’m cast into a category that labels me as dangerous.
Newspaper headlines and news clips love to tie violence to mental illness. You should see the look on people’s faces when they hear you have an illness with “schizo” in the title! People are repelled and afraid. The assumptions are rapid and severe. I’ve had people scared to sit in the seat next to me.
The judgment and stigma stings. I give educational talks in the community for the Schizophrenia Society of Alberta, and I am always shocked at some of the hurtful and judgmental questions I’m asked: “Are you allowed out at night?” “Does your sister feel safe leaving her children with you?” “Do people with your illness actually have any friends or meaningful relationships?”
I’m a person with hopes and dreams. I’m Auntie Mamy to a niece and two nephews – beautiful, bright children who I happily help carpool all over the city. I’m a caretaker for my father as he loses his memories. I have a tender heart that aches when it sees suffering, and I try whenever possible to help ease the weight. I have the dearest of dear friends. Sometimes I feel so much joy that it feels like it touches the marrow of my bones. And because I have known sorrow and torment, I’m determined to find the beauty in every single thing. Have you ever seen a flock of waxwings? I didn’t know that silk could soar!
I’m not my illness. I’m a sister and a friend and an auntie and a daughter and an employee and a student and an author. Most of all, I am a human being. I live a very full and engaged life despite my affliction. And I have accomplished amazing things.
The news often screams about the dangers of people with mental illnesses. I’m in no way dismissing the violent acts that have been perpetrated, but what I beg people to know and understand is that violence is not a symptom of schizophrenia or related disorders. In reality, many people who experience these illnesses tend to isolate and withdraw from society, and some are at risk for self-harm. The truth is, people who live with a mental illness are far more likely to be a victim of violence than to ever be the perpetrator. The people I know who live with schizophrenia and related disorders are some of the kindest, most courageous people you could ever meet.
I work at my wellness every day. And I experience pain and exclusion as deeply as a “normal” person. I’ve overcome a lot in my life, but I still struggle with my illness, still sometimes ache for love and acceptance.
Despite the callousness of my neighbour on the flight to Arizona, it was good to see my mom. We both enjoyed spending time sifting through tender childhood memories in the warmth of the desert sun. It wasn’t so good to see a gun in a stranger’s pocket in the lineup at the grocery store. I thought: One bump of a grocery cart and that gun could be triggered. That terrified me.
There are hundreds of ways to feel safe – hundreds of ways that don’t involve the possibility or accusation of violence. Let’s start by not labelling.
Amy Willans lives in Edmonton.