Extremely different realities are responsible for keeping me alive

Many different doctors I met along the way have had radically different visions of my brain, and especially of the essential philosophy they would follow to keep me alive for a bit longer. While most of the oncologists I met think that pills are the best cure, most surgeon are convinced that I actually only need their cuts, and I also do give myself some very high credits for my radical culinary ventures. Sadly, the way that all of these very different paradigms have been presented to me, has made it quite tricky to choose one single survival strategy.
I do understand that there is a big and legitimate issue with the ego of the people who have spent most of their life on an idea, and need to prove that they are the best, but please do hold on a second. While I accept that perhaps I should ignore some offers like the scorpion venom from Cuba, I do have to remember that actually I should not ignore most of the other approaches and views, as there might be some fundamental truths in those as well. Yes, at times it does happen that one of my funky diets disrupts the effect of the pharmaceutical pills but very often it does not, and actually, by concentrating on cooking healthy food the activities and thoughts of my brain stay positive. Which, by doing so definitely can even influence the work of those pills.
I don’t think that anyone – not even the hyper academic thinkers that I met – can deny that the character and attitude of the nurses passing by and keeping an eye on their patients does not positively and profoundly influence the ultimate goal. And so, once we start looking at the new wider consciousness of the profound importance of the entire group, it becomes obvious that the economy should not be an issue. In order to make it work, no single member of the wider team can be preoccupied by financial stress.
It has taken me a while to feel at ease with these thoughts, but ultimately I have learned to embrace the seemingly random parallel complexities of the various scientists and doctors that have taken care of me. While by themselves in their own world they just have to live with the dark statistics on the imminent death of anyone with GBM, now looking at the various tales of different paradigms and styles that I have encountered they seem sincerely all very excited that they have participated and kept me alive.
The main reason why I am aware of all of these new trains of thought is that these days there are some doctors who have started to actually give priority to this type of complex approach. In order for us to embrace one of these extremely complicated realities (like the bacteria playing with my brain with whom I talk in my book) we have to create and embrace an inter-dependency of styles. Where all parts are equally necessary.
Similarly to the present political thoughts and actions, we will have to recognize that complexity just can’t be read or solved by a bunch of single human beings just sitting next to each other in a parliament. We actually will always need a collaboration among a bunch of people to let some form of collective intelligence emerge. Something that neither you nor I could have already thought of, that can only be born by the sharing of information and energy.


My walks through the world of Magnetic Resonance Imaging machines

(This blog post was inspired by spending a lovely day in various hospitals with the community of the Brain Tumor Research, UK)   I have noticed, or actually people have made me aware that a few days before my next MRI, my mood changes. Well, it could even be a few weeks before, and yes different members of my wider family can describe my character changes in their own ways. But generally, I am a less charming person. There is nothing that I can do to prepare for it. Nothing that really helps. I have tried but, come on, laying totally still for half an hour with… Bang, Bang, Bang, Bang…Faz, Faz, Faz, Faz, Faz, Faz,…Wong, Wong, Wong, Wong… Eee, Eee, Eee, Eee. The nurses, after laying me down and putting a needle in my arm always stick thick material by my ears, as that sound is as loud as 125 decibels, like being in a concert hall listening to a rock band.  They are really the worst and most unsynchronized sounds I have ever heard.  Trust me, I have laid my brain, all locked in an MRI  machine every 3 months for the past 6 years, and I have never found a groove that I could recognize in any way. You know those very abstract modern composers like Stockhausen or Steve Reich, whose creations just sound weird, well those, if you really want, after a bit of philosophical research you can actually discover their logic.  But, in every possible way, there is no logic in those extremely loud sounds. Ok, let me step back a second. The reason why I often find myself walking down to the underground floor of hospitals, and embrace their MRI machine is because, at least in theory, they are able to narrate visually what is happening in my brain. Particularly, doctors and technicians recognize if and how my brain is being attacked, which then opens the discussion of what can I, and all of them, can do about it. One of the main problems I have as I stand up from that MRI machine is that I have no way of receiving any results. I have often tried to gracefully engage in a discussion with the technicians as they frequently seem impressed that I can still talk normally (considering the rather large bird shape hole in the left side of my brain).  But sadly, none of them can really answer as they don’t have a copy of the last MRI next to them.  And, in general, it’s another person who does that job anyway. Waiting an entire week for the results of that machine is like walking away from an exam at school.  It just forces me to continuously doubt myself. Perhaps I might have neglected some details  (have I been eating something wrong?).  At night while dreaming, I occasionally see the faces of the doctors staring at me and moving their head back and forth, right to left. What can I do? The results are created by that super powered machine so, in theory, what is written or rather visible should be 100% clear.  It’s a machine.  But, once again, that is not the case.  Different doctors and different radiologists have given me quite different explanations of the images that appear to highlight the details of my brain. It’s like one of those creatures in Lego that my boy creates with his own imagination. Different spectators do interpret his artistic projects with love, but as if they were different stories.  “It’s obvious that it’s a flying train, not a spaceship”. Yes, in part it is that split between a glass being half full or half empty.  It could be a reaction from the Radio-Therapy bombs that stress out all the parts of the brain, or maybe… it is bits of dead cancer that just hang out there slowly starting to disappear, or obviously some new posters of the cancer cells that are completely untouched by all the pills and Radio bombs that I have taken. So, I can’t reiterate enough that the tone of voice and movement of the eyes of every doctor, while elucidating such data to a patient, is profoundly important for their patients. The only way I have found to embrace the world of high decibels is by doing what my boy does… thinking of it as something else.  Inspired by the calm of the nurses as they lay me down, I occasionally manage to feel as if I am on my own flying train where I am allowed to repeat my mantra and Meditate. (I guess my next Blog will have to be about my relationship with meditation 😉

How to talk about Death

‘Normal life’ is truly beautiful. Every day I love it. I like walking into a room and just being a ‘normal’ person. Yes, I have always presented myself socially through my hair, beard or clothes as a slightly odd dude, but that has always been in a spectrum of ‘strangeness’ that people can recognize or talk about with their own opinions or references.

Six years ago, my obvious and fun social dynamics changed drastically. It was truly mind-boggling to constantly see how people’s faces changed radically while I was narrating, in the calmest way I could, the oncological statistics of my own life. I was aware that using the word ‘death’ would bring sadness, but as my voice came out of my mouth their character, their face, the eyebrows and the rhythm of their breath just astonished me. To make it even worse, once I had put out that basic piece of information people seemed so saddened that they couldn’t even hide or break the surrounding atmosphere by walking away or picking up their phone. What could they say? What could they have asked? There was no doubt that I was the one who had the responsibility to somehow take them out of that space.

My first attempt to break that sensation, to get friends, relatives or random people back into a ‘normal’ reality, was to pull out my IPod and show them the image of my last MRI – so that we could perhaps think about having a laugh at the fact that the big hole in the left side of my brain did look like a bird. While for about 25% of the people that trick did work, I had to come up with something for the remaining 75% of the audience. Sadly, I never really found any visual or verbal narratives that worked, and so to the damage of my marital relationship I used my – ‘I am tired’ card – and just stayed home.

As I had forced the lives of every single member of my extended family to change, I had to find a way to manage my own guilt. It wasn’t really ‘my fault’ but all these people’s lives were wrecked on so many levels- physical, emotional and economic.

I spent some time with a therapist, but I actually realized that the people around me needed to share their drama more than me. It might be strange but actually, often the family members need more support to embrace the changes than the ill person themselves. Along the way I had ran into a few people, partners or family members, who by joining support networks and sharing their stories managed to pull themselves up.

I guess that we, the ‘ill’ people, just have to find our own paths to stay optimistic and distract ourselves from the oncological narrative. Ultimately, it was only that 25% of people who allowed me to talk about my thoughts and my projects. These friends aren’t any ‘better’ than anyone else, they are just able to put their strong emotions aside and embrace my new reality – my explorations of strange philosophy, a new, darker, sense of humor, my impulse to badly re-stich and sow my old trousers and jackets and my new relationship with my computer. I had been writing nonfiction and fiction all my life and my fingers knew automatically where to go even if my sick brain could not read it back. So I very often took rescue there with Alex, the computer voice that read back to me all the misspelled words and never complained about my need to explore adventures with Neil Gaiman’s character Death.


Reading ain’t a kids game…

I understand that we live in a world extensively based on being able to read. However, I only realized how reading is actually an extremely complex operation when I woke up in an Italian hospital, after a surgery to my brain to save my life. Yes, I still can’t recognize any word I have just written on this Blog, but considering that I am still alive and typing away when by all Oncological statistical accounts I should not be, I have had some longer amount of time to discover the nature of this particularly popular skill – which I no longer have.

If I had received a contract saying “by cutting away your capability of reading, we’ll offer you a longer life span” I would have definitely signed that contract, as I believed that relearning to read would be “a kid’s game”. Sadly, it hasn’t been as simple as that. It’s five years now and I still need Alex, the computer voice, to read back what I have just typed.

While reading the first two paragraphs of this Blog you also did not really think of all the work your brain was doing for you. So, during this little pause, let’s try to imagine how the school teachers have the gigantic task of showing their distracted students how a sequence of letters becomes a word. During the first few years they must invent ways to allow their students to stretch their brain in a myriad of different directions to speak out each word – each sequence of text. And on top of all of that, they have to stay flexible while confronting our multi cultural society as each person goes through a slightly different process while reading. (If I will remember, in a different Blog post I’ll talk about why it makes sense that in this moment in history prisons are full of dyslexics).

I realize that quite a few of the doctors whom I met along my adventures grew up following statistics, and so have a really hard time with culture as different people approach issues, thoughts, or what I now call fundamental guestimations in very different ways. (Yes, I know, guestimation is really not a word that doctors like.)

With a lot of meditation, I have accepted that we must embrace complexity with calm if we want to understand all the different and essential stuff that each cerebral lobe does. For example, here is the part that I actually remember of my problem with reading. 1) In the left temporal side of my brain (where I have a large hole) the words are usually connected with their significance. 2) The hole in the left side of my brain actually means that I have a reduction of the visual field on my right eye, and which means that the part in the back of the brain -that is called the occipital lobe- now has a hard time visually interpreting the letters. 3) By not being able to see the whole range of text the meanings of words are often confused.

To be sincere, a good part of The Finch in My Brain will always remain surreal for me as it will remind me of my love and hate relationship with text. But, generally, I am learning to appreciate the complexity of all parts of our body, our social and environmental relations and particularly the energy and love of the fantastically magic and underpaid elementary school teachers.


One thousand word article about my little sun helping me deal with my new realism (or is it reality) after brain surgery.

“Ok, tuck in. Ready? Once upon a time, a long, long time ago there was a bau bau … Miro…?”
“Un cane”
“I mean in English it is a…”
“Ohh yea. A dog.”
“Thank you. That’s what he was. There was a young little dog who could always be found wondering the streets of the big city. He would look around, discover some left over food and occasionally even find some fantastic bits. One day, he saw that a a gaggle of similar creatures were following their mother, and did feel a bit sad, but then he spotted a piece of tomato, right there on top of all the other trash of the Pizza shop, he gladly distracted himself.
He would bark very loudly when those other little animals you know miao, miao… would attempt to take his bits…. Miro?”
“ Until the day he crossed paths with an old tired …Miao… Miao “
Miro quickly interjected “ yes a cat… ““Ohh yes. Cats ”

“Yes. Exactly it was a big, half blind old Miao, miao, who is in no way afraid of anyone else”.

A few days after arriving back home from the hospital with a big scar on my head my sun, while cuddling in bed put his hand on my scull and started to touch it. He asked me “does it hurt Daddy?”
“No. Not really but do be careful, as… it’s ‘fragile’”. How could I talk to my three year old sun about what had happened. How could my boy deal with the complexity of a very aggressive type of brain cancer, when even I was not completely clear of what doctors and statistics were telling me. I couldn’t tell my sun “don’t worry, everything is fine”, because it wasn’t. In fact, it was him, and his imaginative attitude towards life that really did rescue me from the bleakness of reality.

I guess that the tale about a little dog and an old cat has already elucidated, to you reader, how my sun and I have developed a new lexicon to confront some of my amazing new handicaps. In fact, my issues with a very bad short term memory, not having any recollection of the names of people, vegetables, most animals, colors and streets have now all become parts of our private adventures while walking towards school. Without too much philosophizing, I realized that while hanging out with Miro, my various new handicaps have to always become superpowers.

One of the handicaps that was particularly curious for him from the beginning was my lack of reading. While up to that moment Doctor Seuss stories had aided me in my pursuit of raising my sun as native English speaker while living in Italy, Miro did not care, he just knew that when daddy laid down next to him with those books, usually rhymes would start coming out. But sadly now, when daddy attempted to read him those stories, his brain did not like them here or there, it did not like them anywhere. He would not, could not with his eyes, not with glasses or even bright light. And so, very quickly we discovered that inventing good night tales of young and old animals, was a great source for our good night stories. In fact, he often seams to follow these bespoke tales even more than the ones printed on illustrated pages.

A few weeks after I had come back home, Miro, without any particular change of presentation started to ask me about the lovely doctors who had taken away the ‘bad stuff’ from my head, and just a few minutes into my story, as he looked intensely in my eyes, he touched my head and exactly in the same earnestness said, “ I am going to take care of my trains now. We’ll continue this at some other time.” And, just a few steps away started with “Brum… Brumm… “. As a three year old his attention span for such discussions was four to five minutes maximum so, I too could feel satisfied with that information and move on to contemplate other things like what we were going to eat for dinner.

He had no problem accepting that Dad now had to take at least two naps during the day, and so when he would go into his fantasy world of trains and Legos, he would now fantastically remember to keep the “Bum, bum..” to a lower level of intensity.

Recently (he is now eight) I saw him talking to some of his friends that had come over for dinner and he was telling them quite seriously about the surgeons that operated me. I have no idea how his friends read his tales, or how he remembered the details of those events. Up to this day, I have attempted to answer his questions sincerely as they arise, without hiding anything from him. While we were walking through one of the beautiful parks of Rome, he asked me “Papa’, are you going to die?”. Just another question that surprised me but, I guess that the location and the tone which he had selected made it ok for me to tell him “Well, in theory they had said that I should already be dead…” and while standing next to him with my shoulders all broadened, like a super hero “maybe they cut all the bad stuff out, and I will die when I am… old.”

I am not sure, but he really does not seem afraid of death. He enjoys becoming every kind of character, even the really bad ones, and he has always allowed me to follow him in his transformations of reality.

Then last night he asked me to continue the story of the night before. Aware of my bad memory he quickly narrated to me the basic story turns and the details of the two central characters, he even told me that they were called Tom and Jack (which I completely did not remember). Nevertheless, so continues that story of the old cat, who, while believing that he is teaching that young dog new tricks, is actually learning how to view his own history differently.


Welcome to Martino’s blog about his book The Finch in My Brain.

Note that Martino writes all the entries, even though it says”by Bianca”. I just post them. But I’m trying to fix it…



The Finch


Recent Posts

Follow Martino on Twitter