Imagine living twelve years of your life in the shadows: avoiding eye contact, keeping your head down, never speaking up – barely speaking at all, in fact, to anyone. Not because you had committed a crime and found yourself incarcerated or on the run. But because of the way you looked. A genetic disorder you were born with that remained mainly invisible to the outside world until it cruelly revealed itself over your face, your body, your skin, as soft button- like tumors; hundreds and even thousands of them. A genetic disorder that was unknown to the doctors and traditional healers you had consulted when you could afford to see one, the painful “treatments” they inflicted on you with no success, the inevitable suggestion that you deserve your condition because of misdeeds in previous lives: bad karma must be punished. Whilst a lot of the insults are whispered, many are not. Contagious is a word you hear every time you venture out into the world, as is karma – the bad variety. And there is no subtlety in the hysterics of a child who glanced at your face. Eventually you simply don’t go out anymore, unless you really have to. Isolated, afraid, ashamed, completely alone.
“Ms T” arrived at our community centre during a busy lunchtime, more than thirty children were munching their way through soup and rice in the space between the morning and afternoon sessions of the school day. She hesitated on her way in, when the hush fell. She declined our offer to meet privately upstairs and sat down, flashing a nervous smile at the children. Seeing no fuss and sensing no danger, they all turned back to their meals and endless chatter.
Ms T explained that she had started growing lumps all over her body at the age of eighteen, twelve years earlier. She had seen numerous doctors but had never been told what her condition was. Some had tried cutting them off but they continued to grow. She had been told she was dying, that she should stay away from other people or she might infect others.
She moved to the city long after her siblings had left home and made lives of their own. Her mother was old and frail and there was barely any income from their small rice plot. Ms T found a job as a housekeeper (she referred to herself as a “Coolie.”) She said her employer had taken pity on her and that is how she got the job that paid her $32.50 per month for cooking, cleaning and shopping. She was extremely grateful for the opportunity and describes her employer as a kind woman, although they don’t speak much – mainly just shopping lists or instructions for cooking dinner. Ms T sends her income to her mother every month, through the Chinese money changers at the market. She visits her twice a year – to help plant the rice and then to help harvest the rice. Her siblings are too busy to help. They have families of their own now.
Requests for medical assistance are quite common at our community centre. Dengue fever, HIV, pregnancy, random fevers, burns, broken bones. We don’t offer medical treatment but we know where to access it for free or at low cost for most situations. Covering the cost of medication, transport and meals is a hurdle that many face in accessing even free services and we bridge the gap when it’s needed. For situations like this one you just have to do your best. Diagnosis can be the biggest obstacle. We asked her permission to take photos and forwarded them to a dermatologist in Australia.
The thing that struck me most about Ms T was her unfamiliarity with kindness, with conversation. Several times she had requested to take a break, explaining that she wasn’t used to talking to people, she needed a moment to think. I touched her back and she burst into tears. Thinking I had hurt her, I apologised. She told me that she wasn’t hurt, no-one had touched her in years. She held my hand after that. Tight. Apart from her employer, she didn’t know anyone in the city. In her home village, only her mother spoke to her. Ms T was all alone in the world. We agreed to meet again, hopefully with news of what her condition might be.
Neurofibromatosis. Von Recklinghausen Disease. Two very foreign sounding names, big scary words. However naming the nameless removes the power of the unknown. It plots a new starting point. There is comfort in understanding what lays ahead, even if it wasn’t what you had hoped beyond hope for. And I hoped beyond hope Ms T would find some comfort.
Ms T’s hope had been for a cure. But there isn’t one.
She had hoped to have her facial tumors removed. But they will grow back.
And there is more.
Her tumors could be growing internally, harming her organs, damaging her spinal cord, her brain.
The problems she has had with her vision could be due to a tumor growing on her optic nerve.
And this is more than an all alone in the world woman should have to bear all on her own.
We needed to find a local specialist to confirm diagnosis and assess what lay ahead for Ms T. To explain the why and the what to expects. To reassure her that she hadn’t been a bad person in a past life. But now we were armed with two foreign sounding names, some big scary words. So we had a starting point. And we found a specialist. A very special specialist whose specialty is not Neurofibromatosis otherwise known as von Recklinghausen disease, but a specialist nonetheless.
To be continued…