My Mom Was a Wonderful Woman

As you know May is the month of “Awareness” on brain tumors. It means that it is the month in which we try to make it clear to public opinion and political decision-makers that “glioblastoma” is a rare disease but it is also the tumour on which to concentrate all research efforts because the challenges that presents, once overcome they will be able to provide a cascade response to all the other tumours that remain to afflict us and a significant improvement in the life expectancy of all. So I was thinking about what to write for this “consapevolezza” (Italian translation of “Awareness”) and I receive an email from Roberto (yes another Roberto) who is also a computer scientist (like me) and who tells the story of his mother. The story is from a long time ago. Even if, things haven’t changed that much at least in terms of the likelihood of heal. I therefore decided that it was a sign and I report it here in full.

“When people stops you on the street after 20 years and wants to tell you that about her, it must be true.
My mom had me at 40, after 15 years of attempts. She showed me from the window of her shop as if I were a beautiful trophy. My dad was the ‘sick’ one. As a child I knew it wouldn’t be there for long. Yet after my mother flew away, he stayed with us for another 5 beautiful years.

I had just started working. I am a web designer. She didn’t even know what it was, but she was happy. We had just received a backlog of my father’s disability pensions. A figure that looking at it today is a normal figure, but as we were doing badly, it was huge. Rosa was happy, but not too happy. Strange, I think. She will be tired. One day I go to work. I still remember how I was dressed. She brings my dresses to my room, she was so cute.

My sister called me back, around 12 o’clock. ‘Mom is not well, she speaks confused’. ‘Call the doctor’. I run home, at the speed of light. She is ill, she calls ‘the madonna’. The one who prayed with the faith of a woman of the 40s, where the Madonna was more important than God. She ran in an ambulance, I followed the ambulance withy car. Dad and my little sister stayed at home. I arrived and could not see her. A doctor tells me ‘your mother has a bad brain tumor’. I fall (in a wheelchair, thankfully).

I use the internet unfortunately. So I walk into a doctor’s room, and I read that name which is the domain of the site you are reading on. I still remember. The site of the University of Udine. And who forgets it! At the time there was not too much information. I was August 2003.

In Bari they tell me ‘you shouldn’t do anything, at most a biopsy’. Luckily, an old professor of our family yells at me in dialect ‘get out of here’. After a few days we are at the Besta, in Milan. Operation feasible, let’s see in a week. And again after a week there. The bad thrill of sleeping with my mom in a one-star hotel that made her anxious (and I found one at 3, immediately). She was tired, but I was next to her.

The next day they hospitalize her. The ‘standard’ 6 hours, then I go to see her in the intensive. They called me and I told everyone that it had only lasted two hours, that there was no need to worry. Me at 21, alone in a huge city. With me, my friend, my brother, Theodore, who has never left me alone. And the words of comfort of people who years later I discovered to be luminaries. But not visiting, walking around in the corridors. Never revisited a structure as human and excellent as the Besta.

Only me and the internet knew the truth. 5 months pass, 3 cycles of chemo and one of radium. By January everything had returned. Mom flew away on a Friday night, at 8pm. She had been sick for two days, she practically did not move from the bed. But that Friday night, when my sister called me, I was able to go home. I don’t know with what strength (the last ones) she sat alone on the bed. She smiled to me and she flew away. Officially for extreme thrombocytopenia, the cytotoxicity of the treatments (cisplatin, by heart).

But I screwed her. Because I took a little piece of her soul from her, and I hid it and locked it in my heart. And today, when I look at the little girl who was born 15 years after her death, who is named after her, I have the mathematical certainty of having transferred a piece of that soul to her, looking at me through two eyes that are learning to live now.

Be strong. For every shadow I’ve been through, there will be 1000 times of stronger light.

And on this earth, not ‘after’. Don’t worry.”

I hope you enjoyed reading this wonderful story and that somehow the reading comforted you. And, please let us all continue together to spread awareness, “consapevolezza” about glioblastoma and other brain tumours.