Stigma Fighters: Robynne Lewis

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Stigma Fighters: Robynne Lewis

It’s high time I wrote about this…

My much adored son has gone missing. He suffers from schizophrenia and has been coping with this dreaded illness since at least 2008 (when it was first diagnosed after he shot himself in the head).

Deemed a “gifted” art student at a very early age (8), throughout school, he was intelligent and popular; attracting many with his sense of humour and athletic ability in basketball. He became a big brother in 1996; a role he took very seriously; being the only male around.

Despite becoming ill, he was able to move ahead successfully; achieving his driver’s license, maintaining a girlfriend and graduating from College (Culinary Arts program). These are huge achievements for anyone let alone, someone struggling with the demons of having a severe mental illness. By all accounts, he was doing very well. Medication stabilized him and in fact, he was only required to be on a minimal dose of antipsychotic (to attenuate the symptoms of hearing voices). While I tried to encourage him to move ahead with his independence, he wasn’t ready to reside independently. Unfortunately, the next several months were filled with arguments and untruths; the biggest lie being that he had planned on moving in with his girlfriend. His step-dad and I were anxious about this; asked lots of questions, etc. and decided that there wasn’t much we could do/say to make him stay home. He was an adult. He moved and appeared to be doing alright but conversations with him just weren’t adding up so to speak. I began investigating and after a very short time, I learned that someone on his biological father’s side of the family had located him through FB and they went ahead with arranging for him to live with his grandparents. We were all shocked and somewhat saddened by this; the fact that he hadn’t had any contact with that family since he was 8 and mainly, because he felt the need to lie about his communications with them. I immediately wrote to his aunt via FB; explaining to her the course of events that had occurred in his life; specifically, that he has a severe mental illness requiring ongoing, permanent treatment (after all, they hadn’t seen him in about 15 years). She appeared grateful for the information and reassured me that the family was familiar with the illness since 2 of her brothers and her sister’s daughter also had schizophrenia (I’ve long suspected that his grandmother has an untreated mental illness so this information from the aunt, wasn’t terribly surprising to me). In fact, I actually felt relieved knowing this; assuming that the family would be more understanding and perhaps, knowledgable about the illness, symptoms, the need for medication, etc. Unfortunately, I couldn’t have been more wrong.

Slowly over the past 4 years, we have watched him decline rapidly; to the point that our only communication with him over the past 2 years has been through periodic phone calls from the police to either inform me that he had been reported missing or that through his delusions, he was convinced that I had stolen his ID and he’d enlisted the police to get it back from me (clearly there were hints of paranoia and no way for me to get through to him – according to his aunt, he didn’t even want to speak with/ see us). We’ve received no input from his father’s family about all of the times that he was admitted to the hospital and I only learned of his drastic medication change when I ran into him at the hospital where I was accompanying one of my own clients to a psych appointment. As a parent, this has been agonizing; to watch your baby wither away right in front of you. No words.

On Friday, November 27th at 4:45 pm, I received a call from the police stating that he had been reported missing again and the police were searching for him. Apparently, he’d gone out at about 4:30 pm on Wednesday and didn’t return. I was angry that it took 2 days to report him missing however according to the detective, it’s not unusual for him to leave home and not return until the next day. I was more angry to learn that he hasn’t been taking his medication and no one seemed too concerned about that.

Where do I begin to describe my feelings about this? I left him with a family that appears to be clueless about his needs despite them having a lengthy history of familial mental illness. What kind of mother am I? How did I leave him with people who didn’t bother to nourish his relationships with his very large extended, loving family? (mine and his step-dad’s). Now, he’s missing and he’s without medication; likely, completely paranoid and scared. Is he warm? Is he hungry? Is he safe? Is he alive?!!! But life goes on right? I have to work. I can’t stop the world to get off. How do I help my mentally ill clients when my own mentally ill child is unwell… whereabouts unknown?

I literally can’t breathe at times and my heart hurts. I’ve advised my daughter to prepare for the worst but hope for the best. What an incredibly horrible thing to have to brace for. I suppose that we’ve been bracing for it for a few years now but how does one truly cope with the anticipation of potentially harrowing news? That “knock at the door”. Terrifying!!!

There’s so much support associated with cancer, diabetes, heart disease, etc. Physical illnesses. Sadly, there’s little support attached to mental illnesses; especially the truly devastating ones such as schizophrenia; a brain disease. Would we stay hush hush about a brain tumor? Probably not. But schizophrenia elicits a strong, media laden version of this disease eg murderers, criminals, non-humans. If an old woman with Alzheimer’s was reported missing, the entire community would become involved. She’d be on the 6 o’clock news! No one reports about the schizos… unless of course, they’ve been shot dead by the police 9 times, tasered twice (after death) and then handcuffed… all for holding a knife against a gun (RIP Sammy Yatim). It’s “safer” to talk about depression and anxiety in national campaigns such as “Bell Lets Talk” than it is to talk about the insidious illness of schizophrenia. How is a brain tumor any more tragic than a different type of brain disease? Are they both not biological in nature? Why is schizophrenia a “family secret” for so many? Seriously, you’re not fooling anyone. No matter how hard you try, you can’t hide crazy away. Why would you want to? Crazy is a wonderfully misunderstood word; one that should be embraced as a way to distinguish the boring from the creative types. I’m all about the crazy. I attract crazy. I work with crazy and hell, I’m a little crazy myself.

Where there is shame, there is non-acceptance of a human life; in this case, a life that I created inside of me. My son. My sun. I don’t know why God chose me to parent this beautiful soul. I don’t know why he chose me to be his Mom. But I loved him before I knew him and that will never change. Were we a perfect family? Hell no! But we were a family… sometimes we’d be pissed with each other but there was always, all ways, love. When I let him go, I focused on his sister. It’s all I could do. The guilt that parents sometimes feel, for whatever reason, is inexplicable at times. Magnify that tenfold when you’re a single parent. “Did I love him enough?” “Did I yell too much?” “Should I have listened more?” “Did I do the best I could do?”. That guilt… it ages you from the inside out.

imageRobynne has been working in the field of Community Mental Health since graduating with her B. Sc. from the University of Toronto in 2000. She is a proud Mom of 2 children; Andre and Maya and Mischa (the fur baby). When Andre became ill with schizophrenia in 2008, Robynne became more interested and involved in community education and more recently, family related initiatives.

Robynne can be found on Twitter.

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By | 2015-12-03T15:58:50+00:00 December 3rd, 2015|Categories: Schizophrenia, Stigma Fighters|0 Comments

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