One year ago today, my then-4-year-old son went to hospital for a very delicate surgery on his brain, where a tumor had been detected just a few days earlier. We waited anxiously for the results of that procedure, which ended up lasting 8 hours, not knowing in what state we’d find our son (dead or paralysed were possible).
I hardly have any memory of that day. I know that we went to the top of the Eiffel Tower with our boy in the early morning (he was still almost normal, just walking with a strange twist – the symptom that had led us to the doctors and finally to that fateful diagnosis), brought him to the room where he was prepped up and left him there. We may have gone to the movies or to some other attempt at distracting ourselves, I simply don’t remember. It was unreal to us then, and it still is today. We had just been struck by lighting, a senseless, totally random life-threatening condition and didn’t know what to do beyond wondering if we could have seen it before and (each on our own, as the idea could not be voiced) whether our beloved boy would die.
Finally, we were asked to come to his room. His head was fully bandaged, and he was hooked to at least a dozen pieces of blinking equipment monitoring him or drip-feeding him. But he was alive, and sort of responded to the sound of our voice. His whole right side seemed paralysed. The surgeons appeared to be reasonably happy with their work, but would now need to analyse what they had taken out (to know whether it was malign or benign – it is impossible to determine otherwise) and decide on what would be next – nothing, chemiotherapy or radiotherapy, or a combination. They said that they could not take it all out – due to the terrible location of the tumor, the surgery itself could actually be more dangerous than the tumor. We left him for the night to come out of anesthesia and came back the next day. He was already able to respond to us, but still no movement on his right side. He gained strength rapidly in the next two days, and amazingly, was able to come out of his room and walk -well, hop on one leg – in the sun barely three days after the surgery. It would be the first of many amazing acts of courage from him. We took him home the next day. I still cannot believe (and the doctors seemed to think the same) that he was home barely 4 days after a 8-hour procedure on his brain.
Thankfully, everybody around us was great. Friends in the neighborood took our two daughters (aged 5 years and 18 months) with them as much as necessary, my parents came over to stay with us for a while, and my bosses let me take as many days off as needed. And of course, we thankfully did not have to worry about the money stuff, as such conditions are 100% covered by the State. Still, the days as we waited for further information on what came next were not pleasant. Guilt, countless “what ifs”, fear for the future, and numb anxiety clouded our minds and left us in a daze, even as our son was slowly beginning to stand on his legs and haltingly walk. But little movement from his right arm.
After two or three weeks like this, the doctors came back with the news that the tumor was only slightly malign and that chemio was required. A severe reeducation regimen was also required for his arm and leg. Thus we entered into a new rythm for our lifes, with daily trips to the specialised hospital for his reeducation, twice monthly trips to the cancer center for the chemio, and a newly dependent little boy, suddenly unable to dress on his own, to walk without a clunky cast, and with a severely weakened (by the chemio) immune system. My wife gave up her job to take care of our son full time (we received a stipend for her from the State), and we slowly tried to focus again as much as possible on out two daughters, the very quiet and uncomplaining (and brave) older one, and the distraught toddler who did not understand why she had lost all the attention of her parents (at the nursery where she goes during the day, they told us afterwards that they found her incredibly sad throughout these days, and I must say that we simply did not notice at that time). My son was able to go to his preschool once or twice a week for a couple hours, and he was given a hero’s welcome by his class (they spontaneously stood up and clapped him the first time he came back, it was quite a sight. both his siters were great with him as well, surrounding him with love and activity.
His leg made great progress, his arm much less. We first had thought that it would take a few weeks for him to get back to normal; then we were told that we would know after a year; now that a year has passed, he is still handicapped, but we are told that he can still make progress in the coming year and that he has actually exceeded the expectations of all doctors on that front with his progress. He cannot move his thumb, so has trouble holding anything, but he is now able to ride a bike – he simply needs to use his good hand to position his right hand properly on the handle.
We now discover the extent of his handicap, and how that was only slowly revealed to us. Conversely, the doctors were a lot more conservative on the actual fate of the tumor. At first they would not commit themselves on survival expectations and were evasive on the gravity of the tumor. Now that the chemio seems to be successful, I think that they were reasonably confident of it all along (although they were pleasantly surprised by how quickly the tumor receded followign the treatment) but did not want to inflate our hopes. When you hear “brain tumor”, you immediately think the worst, so they had no need to scare us, and they let us absorb the good news slowly; on the handicap side, more of a long term problem, the awareness followed the opposite route. I don’t know if that was a conscious decision on their part, but if it was, I suspect that it was wise.
He has made such unexpected progress that, who knows, he’ll make a lot more. He has been incredibly brave, especially during the past few months, where the weakness of his immune system from the relentless attack of the chemio has required that he be hospitalised a number of times for transfusions and antibiotic injections to protect him against infection. My wife has also been incredibly strong, taking him to see all the doctors, staying with him at the hospital most of the time, carrying the guilt that somehow, in some way, this could have been prevented, or anticipated, or treated early (thankfully, our doctors have told us that there is no known cause, that it was detected early, and that it changed little as the really nasty part was the location of the tumor and not its size), and somehow keeping up with the rest of our daily life.
We are know entering this second year of our new life with an almost normal rythm – reeducation will be done at home, and there are only a few more chemio doese to do, so he is going to school almost normally, and my wife will not need to take him around so much. He is pretty much back to his natural self, a very dynamic, curious, adventurous little boy. At times he is bald, and there are some physical activities or gestures that he cannot do, but otherwise you’d hardly notice that he had a brush with death and that he may need help for the rest of his life for some things. We are living with the consciousness of his – and our own – vulnerability, and also with an acute awareness of how the solidarity of all around us has helped and will keep on being needed in the future – the institutional solidarity of our compatriots via the healthcare system and the educational system that treated him and welcomed him and supported us, and the more immediate solidarity of friends and family to help us with basic things like spur-of-the-moment childcare, the simple but invaluable support of a friendly presence for us and our kids, and simply being able to enjoy ourselves normally as much as possible.
I intended to write this story today in any case, simply to tell the story and get the feedback from you guys that I have grown to appreciate and crave in recent months, and which has helped me go through this period with most of my sanity, but I think it takes an additional dimension in the context of today’s tragedy in the south of the USA. We have seen amazing displays of solidarity, kindness and generosity from untold numbers of people, and we have seen the lack of institutional solidarity in the failure of the government to save or to care for the people of New Orleans. We all feel, correctly, that while individual solidarity is a great thing, it cannot be enough in such circumstances. Some of us are weaker, or unlucky, and we need to help them. We need institutions to help them. We need organised institutions to help them. It is not your fault when disease strikes, or when a catastrophe strikes, and it is not only up to the closest friends or family or the random kindness of unknown strangers to step up to the plate, it is up to all of us, and this is what governments are for – to organise solidarity and to provide safety and help to those that need it, without questions, without conditions, and without reticence.
I was lucky to have such institutional solidarity be provided to my son and my family. The families of New Orleans have obviously not benefitted form the same, and that comes, for a large part, from the destructive ideology of the right for the past 30 years, that abhors solidarity and claims that individualism should triumph (without of course having even the consistency to say that personal responsibility and virtue should govern our acts). That ideology has made “government” and “the common good” dirty words, and states that victims deserve what they get. They are not, and they don’t. We must denounce its utter cynicism and failure; its corrosive nature for our social fabric, and its total moral bankruptcy. That ideology is gaining ground in Europe as well, and we must fight it together, for my son, for the homeless of Louisiana and Mississippi, and for the future victims of disease or catastrophe – for all of us.
Government can and must protect us from the random miseries of life.
