The feminist who made me: my mother’s struggle with CIPD

I saw my brother for the first time on the 9th of September of 1996. My parents had been away for a month, which in the larger scheme of the whole adoption process wasn’t the longest part, just the last effort.

Nevertheless, for a 6 year old it felt like an eternity. My grandparents must have agreed, since my grandmother developed the habit of showing me photographs of them, “So I wouldn’t forget their faces.”

At first I treated my brother as my new toy, and as a small 2 year old he didn’t seem to mind me picking him up and shoving him in a toy pram to play around the flat. I didn’t question my parent’s decision to adopt, or gave much thought to the idea of it. Back in the Barcelona of the 1990s, adoption wasn’t yet as commonplace as it is today but for the first time it had people’s attention, and it was becoming a growing trend.

To me, Romania was just another word I couldn’t relate to. After watching a documentary highlighting some of the poor conditions in which the children were kept in some orphanages in China, the only thing I had to say when my parents asked me what I thought about their decision was, “But we’re not going to chain him down to the bed, are we?”

We were just a regular family, and I never questioned why they decided on adoption instead of trying to conceive another kid, until many years down the line.

My mother was born in April of 1954.  My grandfather had moved to Barcelona from the south of Spain in search for a job and my grandmother used to work at a chocolate factory. They married, moved in together and had two kids, my mother the youngest.

As a child she suffered an episode that left her paralyzed and weakened for weeks, but that subsided as fast and unannounced as it came.

Over the years, similar problems connected to her immune system would follow her every move, some of them sorting themselves out, and others leaving their mark behind.

Her early teenage years brought the news that she suffered from Diabetes Type I, and would always need to inject insulin into her body and monitor the sugar levels in her blood.

By the age of 15, while other girls would have been choosing lipsticks, she was searching for the right shade of foundation to disguise the white patches that had started creeping up from her elbows and travelling all over her body. At least, she said, she felt famous because she shared the same skin disease as Michael Jackson.

She never had the opportunity to undergo the kind of treatment he received, to kill the melanin of the unaffected areas and even out the tone. It happened naturally through the years, though. Her hair grows in pure white where it used to be raven, eyelashes a translucent whisper, barely there at all.

One day she woke up to find her legs dragging, heavy numbed meat that wouldn’t respond to her brain anymore. Again, lucky days, it went as quickly it came, but this time it left her the present of her right leg moving on a slower time frame, only a few seconds behind, but slowing her busy life down. Teenage me used to find that annoying.

The next big blow came a few years later. Over the course of a week, the peripheral vision on her left eye became increasingly blurry, until slowly her world shrunk to a dot.

Again her vision restored itself, but not perfectly, and this time there was hospital time and heavy intervention. It was the first time the gravity of her condition hit me, and the first time I recall seeing her cry.

Her condition remained relatively stable for some time after that. My brother forgot any memories of Romania, I moved to London, and my father continued to quietly keep it all working out. Until the winter of 2013, when the world turned upside down, and we all learnt to walk on thin air.

General tiredness, numbness of the limbs and a tingling sensation in her fingertips and toes lead to heaviness in her steps and a struggle lifting simple things. Then it all stopped and with it, the ability to move her limbs at all. This time, the prison of her body didn’t seem to want to release her.

The slow menace seemed to pick up its pace, almost as if it was making up for the time lost.

The days of the races had begun.

The race for the doctors to find the right diagnosis against her rapid deterioration. The race for my father to take charge of it all while still working full time. The race for my brother to make sense of the situation, and suddenly finding himself left to his own devices as a teenage boy struggling to not fail at school. My race for knowledge from miles away, catching snippets of information through text and quick calls, and filling in black holes with the help of the patron saint of the uninformed and anxious – Dr. Google.

I never chose to ignore what was happening, or to purposefully not confide in the people around me. I simply hadn’t understood what was unfolding yet, and the gravity of the consequences it would entail.

At its worse, she started to loose her speech; the last bastion of hope, her opinionated bossiness one of the qualities that makes her who she is the most.

At the same time that she was getting her will written, I was finishing university and going out with friends. They were the accidental witnesses of my unacknowledged downfall, as I would drink until I couldn’t hide my tears, and a stream of confusion and early mourning would follow. I was mourning things I never thought I wanted; single, gay and non religious, I found myself mourning that she may never be able to be present at my wedding.

The grief came out in spikes, but the anxiety lingered and followed me everywhere.

Some days, I would wake up with the certainty that my legs were feeling numb, and that the tingle in my toes was my beginning down that familiar road.

My recurrent panic attacks occurred parallel to the doctors searching for a better treatment for her, and enquiring about the possibility of the illness having an hereditary component.

As a new treatment proved more effective, we finally got given a name: chronic inflammatory demyelinating polyneuropathy, which as scary and long as it sounds, was better than motor neurone disease.

A nurse by profession, she took her diagnosis on board and never stopped researching. With one successful experimental treatment under her belt, she’s been spreading awareness of it and is currently writing a book about her experience.

It took me 23 years to ask her why she only had me, and chose to adopt my brother.

Her answer was a loaded gun of hope and sadness.

The only time in her life when she didn’t suffer from any autoimmune complications was during her pregnancy, and after I was born, the symptoms and future complications returned to their natural course. Doctors said her body could not have coped with such an effort again.

I had been a risk to her and to myself.

That knowledge spiralled my hypochondria out of control, but it also made me understand my mother in a way I had never experienced before. That is the day my mother became Carmen, a woman in her own right.

Even through the loss of her autonomy she remained fiercely assertive and independent, holding herself and us together. She doesn’t consider herself a feminist, but she’s made of it.

And then she made me, against all the odds.

Veronica Gargallo Llamas is a stylist and member of Fourth Wave: London Feminist Activists. She is currently studying a Masters in Gender Studies at Birkbeck University.