One man lurches toward his chair, and falls just short of landing in mine. Another leans heavily on both his walker and his adult son, yet manages to advance a mere 15 cm with each jerky step; I calculate it will take him 5 to 6 minutes to traverse the 10 metres between the restaurant entrance and the table at which his friends are waving.
The sense of a swift motion behind surprises me, and I turn to see a tall, strapping man stride through the door. His gait is sure, his purpose clear. He must get from Point A to Point B as quickly as possible, for the arms draped around his neck at not those of a sleeping child but of his listless wife, a woman approximately my age (mid-forties) and size (50 to 60 kg). How long will he have the strength to carry her through this thing called “living with MS”?
But soon the room is a-buzz with wine glasses tinkling to toasts of “Norok”, noisy chatter and raucous laughter. A man who had seemed deeply sad when sitting alone in the lobby earlier flashes a brilliant smile and gets a twinkle in his eye, “Having MS,” he says, “Makes me feel like Elvis Presley or Michael Jackson. It doesn’t matter what I do, it seems I have to pop at least one pill before I do it.” His friends raise their glasses, some with trembling hands that tremble more as they come close to tipping the wine into their mouths. Surrounded by his people, Florin is transformed: in my eyes, has gone from depressed to absolutely dashing.
“The situation is far from easy in Romania,” says Aurora Boran, President of the SSMR. “But I really believe you will not find happier people with MS anywhere else in Europe. It is part of our culture; Romanian people get through hardship by using humour. The people in this room may be physically ill, but for the most part they are mentally well.”
The SSMR makes a point of hosting a lot of activities, precisely to tip the majority/minority balance. In society, PwMS remain misunderstood and often shunned. The Romanian language has dealt them an additional blow: the first part of “scleroza multipla” is just one letter shy of “sclerozat” – the word that means “lack of mind” and is used to denote psychological disorders such as dementia or senility. Many have gone through the devastating process of watching old friends drift away; the Society’s social events are an important means of helping them find new ones.
Aurora’s husband has advanced to relying on a wheelchair but, like Florin, he laughs easily and shares his story openly. As a singer dressed in traditional costume ends her final performance, he leans forward with to be heard above the applause and another road of toasting.
“Last year, when we held this Congress in Sibiu, there was music and a few people got up to dance. Soon, everyone had joined in. Those who could stand did, those who couldn’t stayed in their wheelchairs. But everyone was in a circle, with their hands joined and moving slowly around the room. And we learned that together, we can dance.”
