(Picture not my own, credit where due)
Today I am going on a quest…I am taking my youngest son to a University town in south-western Germany. 461 kilometers away from my home. On the bus! We’ll be on the road for many, many hours. It is an alternative way to travel, trains in Germany are very expensive and not all that punctual-one of the prime virtues of the Germans-nobody knows why this particular virtue doesn’t hold true for the Deutsche Bahn. But whatever…
As the photograph depicts, this is the vision of someone with Retinitis Pigmentosa. This is how I see our trip. There is an end goal, but everything else is covered in darkness. The peripheral vision is lost, as the photoreceptors die off-slowly but gradually. What remains is a peek of the world, as if through a key-hole and in the end…who knows?
My eldest son has already been diagnosed with Usher Syndrome Type 2 a, of which RP is a symptom. We are going to participate in a study called TREATURUSH, a collaboration between three countries to find out co-relationships in genetics as to what causes Usher and ultimately how to treat it. Currently, there is no cure.
This trip sounds like fun…seeing the country side rush by from the window, a pretty town, situated on the banks of a river. Famous old established universities, a castle up on a hill. But we will be spending 2 of the 4 days traveling and the other two days in the University Clinics. Having eyes and ears tested. I hope that I will be able to compensate some of the tedious hours with something he will remember more pleasantly. Mostly, I am hoping that the results will be negative! That he will escape this predicament which will ultimately rob him of the ability to appreciate the world around him with his sight. There are other and more “pure” ways of seeing the world around us, but that is always easy for someone to say who is not afflicted with vision loss.
Science is a grail. I have faith in science. And for the rest, well- we will take it one step at a time.
If you want to know more about Usher, here is a link.