“The vulnerable will often not come to you; you have to go see them.” – Andrew Harper, UNHCR on the Syrian refugee crisis on The Daily Show with Jon Stewart (Tuesday, September 3, 2013) – This is completely unrelated to the rest of this post, but it was both interesting to hear the perspectives on the Syrian situation and of course hilarious to hear Jon Stewart’s commentary on America trying to look tough and use an attack on Syria as a measuring stick for national penis size.
Something about the Syrian refugee discussion and the broader consideration of “the vulnerable” caused me to reflect on a few recent events in the personal lives of people in my life – or at least my periphery.
A former colleague recently lost her six-year-old son (sorry – article in Icelandic). He died after battling myriad serious ailments that were symptomatic of an exceedingly rare genetic disorder, geleophysic dysplasia, with which he was born. I never met the little boy but had worked with this colleague during her pregnancy and knew that from birth, he struggled and fought courageously – and she fought right alongside him. I had followed her blog about their various battles with him being in and out of the hospital and undergoing surgical procedures and treatments. Apart from marveling at this little boy’s tremendous strength and sweetness – which shone brightly in all the photos of him that she shared on her Facebook page – from afar, I marveled in another way at the dual failure and miracle of modern medicine. Failure might be too strong a word. It is more just that medicine is in this kind of situation mysterious.
It took, from what I understand, a while to diagnose his condition – understandably because there are no well-reported statistics on the number of people in the world who have been diagnosed. The fact that the condition affects so many parts of the body in such dramatic ways could probably lead doctors to make various, incorrect determinations before finally diagnosing properly. Of course – medicine is not about reactionary interpretations, i.e. jumping to the rarest, most unusual diagnosis immediately is not recommended!
The fact that modern medicine has a diagnosis at all and can identify this is amazing in its own way. But then there is no cure, no real remedy – just an endless string of invasive medical procedures that can alleviate presentations/manifestations that the disorder causes without providing much relief. I do not know enough about the condition or about the boy in question. I marvel that one little boy could go through so much and that, as much as modern medicine had to offer him in the most advanced and state-of-the-art facilities available, he and his mother could only buy time.
Around the time of the little boy’s death, I attended a meeting at work to meet with the founder of a Norwegian charity – a plastic surgeon from Norway who has devoted his entire life to working on burns, and most of that time has been spent working in the most basic conditions in Ethiopia. His presentation, showing us what he does day-in, day-out for burn victims in Ethiopia, was nothing short of astounding. Mostly he provides surgical care for people who have been badly disfigured and disabled by major burns that have “healed” in a way that has taken away a great deal of the victim’s ability to function. If these burns had been tended to (let’s not even start on the availability of basic healthcare in Ethiopia) when they occurred, the injuries would not have become as debilitating as they were. Some people were living with these crippling effects for 20+ years before he came along and helped them. The things he was able to do with simple tools, a few surgeries, patience and time made an unbelievable difference.
I was struck by the juxtaposition here even though these are in no way cases that can be compared, clinically or otherwise. Sometimes simple (after the surgery, anyway) approaches and treatments, like those offered by the charity in Ethiopia, will with relative ease, restore someone’s health, mobility, productivity, a sense of normalcy. And then in the most modern facilities in the world, getting the best care possible, there is really nothing that can be done – just stopgaps that one hopes will provide relief for a while. Not that that is nothing. I am not a medical professional – at all – this is just me voicing my perplexity at modern medicine.
And of course a tiny reflection remembering the brave little boy who has left this life – but whose existence and relentless spirit touched people, strangers and intimates alike.