The Other Side of Schizophrenia: Grief

By Rebecca Chamaa 05/24/17

Most writers my age have numerous books and incredible bylines. I have wracked up side effects and symptoms.

The silhouette of a woman behind a curtain.

Sometime in my 27th or 28th year, I had my first psychotic episode. By that time, I had graduated from college, married and divorced, and had a successful career as a social worker. I was an adult, a fully formed human being.

I have memories of what I call the “Shadow Woman,” who I was before schizophrenia. Now, I must live with who I am after.

On a day when I am too anxious to leave the house, the Shadow Woman, or her memory, visits me. She was outgoing, adventurous, funny and daring. She would meet people on the ferry or at the park and invite them home or follow them to their residence. She liked to go to bars and restaurants, and she would talk to the people she met there. She made fast friends and was up for mischief and anything out of the ordinary. In my mind, she was fearless and bold.

That young woman has passed as surely as my grandparents have passed and I have been left to grieve her.

Twenty years is a long time to grieve, but grief is like that. It comes in waves; it visits you in dreams, it calls in the middle of the day mid-panic attack. The woman I lost at nearly 30 years old was on a path as a poet/writer, and social worker. She was single, with many friends; she had toured Europe, lived in the Middle East and wasn’t afraid to hop on a plane or drive by herself from Seattle to Los Angeles to visit her latest love interest.

Even though writing was the Shadow Woman’s only real passion, the medications I was on for the first 15 years after my diagnosis kept me from the focus necessary to write. Reading as well was difficult. Besides having breaks from reality, giving up the dream to be a poet was the hardest part about schizophrenia for the first 10 years. I mourned the loss of rhythm and internal rhymes. I longed for musicality in my words and language.

On a different antipsychotic medication, I started writing again approximately four years ago. I applied to MFA programs and was accepted. I studied poetry with well-known writers. During the process, I figured out that non-fiction and not poetry had become my love. I dropped out of the MFA program to pursue classes in non-fiction. I am now 51 years old and just beginning a career in writing. Most writers my age have numerous books and incredible bylines. I have wracked up side effects and symptoms.

Although writing is again a part of my life and I am grateful for that, the Shadow Woman has not returned to me in most ways. Traveling is a difficult ordeal for me. I can’t go anywhere early in the morning because if I disrupt my daily routine, I am almost certain to spend the whole afternoon heavily medicated from an episode of anxiety. If I do travel (which is rare these days), I take a late morning flight. I can’t take an afternoon flight because if I arrive in a city after dark, I will be frightened and anxious. Then there is the reality of medication: I am fearful of losing my medication or having someone steal my purse with my medication in it, so I take precautions to avoid both situations. I split up medication when I travel so that if I lose one source, I’ll have another. I also research my destination ahead of time to see if the pharmacy that has my records has a branch in the city I will be visiting. The steps I take from worry, concern, anxiety and paranoia go on and on.

With paranoia and anxiety as almost daily companions, I am so far from bold, fearless or adventurous. On most days I don’t leave the house, or if I do, it is simply to get the mail or walk five blocks to the mini mart for milk or something else I need. I’m not very social, and I wouldn’t even consider asking someone I met on the street to come over for coffee. On many occasions, I cancel plans with friends because I am feeling anxious or unwell.

Grieving the woman I was is real and painful, but I would never want someone to feel sorry for me. Living with schizophrenia is nothing like the stereotypes portrayed by the media. For instance, many people in treatment and on medication stop hearing voices and, statistically speaking, we are far more likely to be the victims of a crime than the perpetrators – no mass shootings like the ones sensationalized on television. As I get older (as frequently happens to people with schizophrenia), I experience fewer of the well-known symptoms of the illness, such as the hearing of voices and delusions, and more of the lesser known symptoms like lack of motivation and for me, extreme anxiety.

But if someone asked me about my life, I would tell them it is great. I have decent health insurance, a loving husband, a roof over my head, enough money for groceries and to pay the Internet bill. I have a computer, so I am connected to the world at least electronically. Yes, in so many ways, I have it good. But it doesn’t keep me from wondering about what the Shadow Woman would have achieved if she hadn’t died so young; if she hadn’t been replaced with someone she probably wouldn’t like and definitely wouldn’t recognize, even in the mirror.

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Rebecca Chamaa, is a writer and advocate for the mentally ill. She lives with paranoid schizophrenia. Her poetry and essays have been published in Teen Vogue, Byrdie, Good Housekeeping, The Fix, Ravishly, Transition, Structo, A Year in Ink, Pearl, City Works, San Diego Reader, Role Reboot, Manifest Station, The Mighty and others. She and her husband also published an anthology of poetry: Sundays at Liberty Station. You can follow Rebecca Twitter.