The thing we call “Mental Health” system so often clamps its iron jaws around us – disabling not just the person given the diagnosis but also their entire family. The effect can be devastating, and it often takes a decade or more before the people caught in the trap realise its not working for them and they need to find different way.

This is an open letter from a mother who wanted us to share what finding the hearing voices movement has meant to her. It’s pretty much as it first came out at 4am. I’d asked, the previous day, if there was something she would like to share from her experience.

It has been edited – lightly –  to protect identities.

Q. What has finding The Hearing Voices Movement meant for you? 

Meeting you, and other people who live well with voices, liberated me from the tyranny of the story I’d been fed and believed – about illness and leaving it to the professionals – and allowed me to see my daughter as “normal” and capable of recovery. A lot of harm was caused by my own misguided actions and the trauma inflicted on us by the people who were supposed to be helping us.

I felt like my adult daughter’s keeper, the long arm of the law, coercing her into taking the hated prescription drugs, getting her to appointments, calling the ambulance, waiting for hours in rundown waiting rooms for regularly scheduled ten minute appointments where concerns were dismissed, no one seemed to get well, and the only thing on offer were hospital time and drug “adjustments”.

I watched my beautiful daughter restrained, put into isolation, locked up and drugged against her will. I was told that it would prevent her condition from getting worse, becoming permanent. I tried to convince her it was for the best. The doctors wouldn’t speak with me. Nurses gave conflicting information. 

I thought I was fighting for my daughter’s life.

I saw her develop facial tics, lose her hair, put on weight, lose too much weight, then put it on again. I saw her stop menstruating, bleed from her breasts, lose her balance, coordination, develop tremors, shortness of breath, heart palpitations. She wore sweaters in the summer, went barefoot in the cold. She couldn’t cry. She stopped cleaning and looking after herself. She quit school, lost jobs, then stopped trying. She vomited, often. She got pneumonia, drank too much beer, coffee..started chain-smoking. I got conflicting information about drugs and their side-effects from pharmacists and doctors.

It was horrifyingly painful to watch and to endure alongside her.

But I stayed, alongside her, walked with her, swam, shopped, biked with her. Took her on trips, registered her for courses, college, yoga training, dance classes & massage therapy. Helped her put together cvs, helped her look for jobs, drove her to private therapy appointments. Intervened with family, who were often cruel, took her out to dinner, on holidays, helped her fill out forms, she was always losing things, her purse, ID..stuff..buying things she couldn’t afford..

Mostly, I worried.

I took the brunt of my daughter’s anger and the frustration of other family members who held me responsible, blamed me for not taking better care of my daughter, called me a bad, neglectful mother, an overprotective mother. Mostly they abandoned us, or seemed indifferent or unaware or fearful or busy or…..

When I could I researched and sought out help, kept records, there were stacks of books and papers, notes everywhere, lists of phone numbers, potential resources, counselling for me and my husband.

“Trust the professionals,” they said.

I coerced her into expensive specialized private rehabs, twice. She witnessed a suicide at the last one and, when her voices became apparent, they upped her drugs. None of the promised services or aftercare materialized. 

Her voices were never addressed, except as symptoms to be dreaded.

I moved her in and out of apartments, dealt with irate roommates and landlords, covered expenses, replaced things that went missing…on and on..one calamity after another.

I was unable to sleep or focus. I lost weight. I was in severe emotional pain, it felt like a death in the family, the death of a child, but unacknowledged. I became socially isolated, saw no way out of grueling pain and unrelenting grief, a sense of hopelessness, hell on earth.

When I realised I needed support, needed to be part of a support community I was told I couldn’t  join one group.  The reason they gave: “you are not the affected one”.

This all happened at a time in my life when, after a lifetime of taking care of others, I was excited and looking forward to time for myself and for my husband.  I was going through menopause while helping to look after aging parents who became ill, were in and out of hospital, then died. I got angry calls because I wasn’t doing enough for my parents, was being too selfish. My husband had several serious health issues as well…

So I wrote, took pictures, did improv and monologues. I learned to sing and play guitar. I started performing, and jamming and then I met you, and realized that trusting the experts and believing that story of illness and the drug fix was a BIG FUCKING MISTAKE and I wasn’t afraid anymore.

I got my life back.

Afterthought:

There is so much untold story here, a lot of sleepless nights, slamming doors, unscheduled rescue flights, drunken brawls, I’m getting stressed out just thinking about it…vitamin therapy, food allergy therapy…you name it, we tried it..and then there was my whole fucked-up stressed-out life before I met my husband, and before my daughter’s first hospitalization. Okay, need to slow down, read my book, try to nod off for a bit..thanks for asking.

After afterthought:

I’m torn about sharing…mostly because I don’t want to risk hurting the people I love (or them hurting me…ouch) but also because I want to focus my attention on the present and all the great progress we’re making now that we’ve left that behind us. I mean, once I realized that people can and do live well with voices and that recovery is possible, the voices ceased to be the problem, and the healing process began. The people who hurt me were likely well-intentioned and/or clueless (I know I was) and I’m not mad anymore but, maybe by sharing my story, others will be encouraged to tell their story, and things will start to change..so here goes..

yours,
Caroline,
a mother in recovery.