In August 2015 my son was not yet two years old and having seen him strange for a while, we had a check-up and it was confirmed that he was epileptic. Now, you will understand that this is not exactly news one wants to hear, especially if the only things one knows about epilepsy come from the films, the ones with those terrifying scenes of people shaking on the floor. Our son’s episodes were actually ‘absences’, his head would fall off and he would go into confusion for a few minutes and then return to normal; but tired for a while. With medication, however, the problems were solved; he was doing so well that in 2018 they were gradually reduced to zero. Then in late 2019 the epileptic episodes returned, coinciding with the emergence of the covid on the other side of the world; cool. Different epileptic episodes. Always conscious but with flashes of light and splitting of the figures; visual things in short. Another novelty was that this time it was drug-resistant, even changing dosage and medication the result did not change; i.e. epilepsy.
In the unluckiness of being in the minority of drug-resistant epileptics, he was lucky to be in the minority of operable epileptics. Now, to operate an epileptic is to operate the brain of an epileptic. Now, you will understand that when we were told ‘let’s operate’, our first reaction was OH GOD. We had come from complicated years, this was yet another boulder. Now, with boulders you can do two things: you can look at them or you can do bouldering. We have done a lot of bouldering in the past years; I don’t want to brag, but I think we have gone through these years of epilepsy combined with the world pandemic in a bad-ass way. What we have learned from 2015 is that you have to keep going. There is no alternative; whether you are a weak person or a powerful being, there is only one choice: you fucking keep going.
So, as we were saying, the operation. On 28 April, my 44th birthday, our 9-year-old son had his brain operation to remove the localised lesion that was causing his epileptic episodes. The following day, 29 April, my wife’s 40th birthday, our son was moved out of intensive care and into his regular hospital room. In total, we were in hospital in Basel for five days, then ten days at home in quietness and then off to school again, back to normal life. Done the checks, things are now proceeding smoothly. More checks in September and then we will start to lower the dosages of the medicines. It’s been quite a month and a bit stressful, now my wife, son and I would like to relax for a while; to live a…quiet life.
Approximately 0.8% of people in the world suffer from epilepsy, many of these are children. Epilepsy is the most common chronic neurological disorder after headache. Epilepsy can be lived with, my son is an example. There are different types, from the ones you see in the films to the more ‘discreet’ ones like my son’s. Fortunately, science has given us effective medicines, except for the unlucky ones like my son. And then for a lucky minority, of which my son is one, there are the operable epilepsies, i.e. those that are caused by a precise point in the brain not too far inside.
Over these years I have learnt many things, one of them is that the famous phrase ‘Everyone you meet is fighting a battle you know nothing about. Be kind. Always’ is a cliché but it’s fucking true! You imagine that nothing so ‘peculiar’ could happen to your child, but it does. I think I have learnt to be kinder to others, more empathetic. Be kind. Always.