Every morning, when I wake up, I go next door and check on Alex. I knock on her door, and sometimes I hear a rueful answer muffled by bedsheets. Most of the time, I'm met by silence, and I go into her room to find her curled up in bed or on the floor. She can be shaking silently, or crying, her hands clamped to her face. It can take half an hour of coaxing before she opens her eyes.
I'll wait while she has a shower. If the night has been bad enough, she'll collapse in the bathroom. I throw a bathrobe over her shivering form, calm her down, and gently lift her out of the shower and take her to her room. Sooner or later, once she's dressed, we are both off to work.
During the day, it's hard to think about anything else. I worry about her, how she is going, whether she's safe, whether she is happy. We make contact a few times during the day through email and text message. If her anxiety levels are particularly high, I will leave a little early to pick her up from her work, and we'll go home.
She lives mostly on a diet of liquid substitutes such as Sustagen. If she's feeling bright enough, she will eat an entire meal. She does her best, but forcing herself to eat solids will bring on an automatic choking and vomiting reflex. Night-times are the worst of it. She rarely gets more then a few hours sleep; insomnia and flashbacks make sure of that.
I have the bedroom next to hers. At night, I hear her coughing and gasping for breath in her dreams, crying out for help, her body wracked with muscular spasms and memories of agony. Often enough, I go into her room and hold her hand. I tell her that everything is OK, that she's safe, that she's just having a 'bad dream'. I tell her stories and read to her. If she's particularly bad, I'll sleep in her room to keep her company.
For me, it's been six years. For Alex, it's been two decades.
Being a carer for a torture survivor is quite different from being a carer for someone with a chronic mental or physical illness. Alex's needs are deep and complex, crossing over from psychology, to medicine, to law enforcement, and back again. She is the survivor of a paedophile group that used torture to keep their victims compliant and silent. As a result, she has such severe trauma symptoms that it has been necessary for me to move in with her to look after her.
Since February, Alex has been undergoing treatment as a trauma survivor, and she has been responding very well. Before treatment began, she was barely able to eat, and her nights were filled with nightmares and flashbacks. She rarely slept more then a few hours a day. Her anxiety levels were extremely high, and she found it difficult to leave the house unescorted. For the first time, treatment has given her a sense of hope for her future, and the ability to manage her intrusive memories and fears.
Much of my time is spent simply keeping Alex company - we live together, socialise together and spend 'down time' together. What people rarely see is the work that I do behind the scenes: helping her eat and sleep, talking her through flashbacks and triggers, researching new symptoms and situations as they arise, networking with other carers and activists, and liaising with her workplace, her doctor and the police. This takes hours every day, often late at night and early in the morning.
By providing mediation and care, I help Alex to re-engage with the healing process, because she knows that I will help her stay safe and manage her anxiety. Without that level of care, Alex would be unable to work, unable to see friends, and, largely, unable to leave the house. In the time that I've lived with her, she has put on six kilos, held down a job, developed a friendship network, and found comprehensive treatment.
Trying to get help from professionals, such as doctors, psychologists or police, has proven extremely difficult. Professions are typically empiricist and 'hard nosed', whilst Alex's experiences are affronting and well outside their realm of experience. My role in this situation is often seems ambiguous to them - "Who is this man? What does he mean when he says 'carer'?" Advocating on her behalf is often a precarious balance between recognizing their expertise whilst trying to assist their understanding of Alex's rare circumstances.
Sometimes I am so scared and fatigued all I can do is give her a hug and promise that "It's going to be OK" although I have no idea how to make that true. And then, the next morning, she might jump out of bed. She might have a great day at work, come home thrilled with her karate class, and plough into a book that fills her with hope and excitement. She might have a breakthrough with her psychologist, or go out with friends, or just eat a full meal. The little things are what tell me I'm doing a good job.
Every day is a new world. Sometimes I feel a little like a parent, watching her grow and learn in preparation for striking out on her own. She's already making plans for travel, study and a new career. She is exploring possibilities that she never knew were hers, and reclaiming choices that the torturers thought they had erased forever. They wanted her to be an empty shell. Instead, they face a beautiful young woman fighting for her freedom with a strength and intelligence far beyond them.
Pretty soon, maybe in a matter of months, I'm going to be a "regular"
guy again. I won't have to talk her out of bed every morning, escort her to
and from work, or spend my nights trying to soothe her nightmares. I can start
pursuing the things that I placed on hold - hobbies, friendships, relationships.
It's my hope that the things that she's taught me will enable me to go on to
help other kids and adults, who, like Alex, who have suffered extreme abuse.
My time as Alex's carer may be drawing to a close, but I'll never forget what
we've been through together, or the power of the partnership forged between
a carer and their loved one.
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page updated
14 September, 2007
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