← back to Testimonies pALS

ALS Brother…

That day late in November it was drizzling melancholia. The weeping willow leant forward towards the graves to protect them against the intrusion of the living. Markus went to the graves of his father and his brother. He had this habit to go to the graveyard every year to greet his brother, but then again at days when the garden was empty. The somehow hollow tradition of paying a visit to the graves and brightening them up on All Saints' Day had always filled him with a feeling of repulsion. Even on that day keeping up appearances sometimes tends to overshadow the pain over those we've lost.

Standing in front of the simple grave Markus allowed time to get back to him and reflected on all those years they had attended school together. It hadn't always been such fun to be responsible for his younger brother at school, to see to everything when things went wrong. Take that first, soaking wet day in September when Bert went to the big school for the first time and Markus had come back with his friends but without his brother. He had felt really guilty about it.

Markus missed Bert, who was born on Santa's Day. Quite a gift for a four-year-old! He didn't exactly miss Bert's technical skills although being technical was very much unlike Markus. Bert tinkered with all that was broken and gave it rehabilitation if not perfection. Above all he missed being together with him, his happiness, his having peace with what was yet to come, Bert's love of his family, the happiness that in the end was allowed him only for a short time. So close and yet so different. As a child differences tend to be blown up but once it becomes an adult those differences can grow into complementarity. What does it mean to have a brother or a sister? Everyone of us chooses his or her own way and yet the roads we take sometimes converge again for a while, when there is joy or sorrow around a table set with memories.

Years back –some of those memories stay etched in detail in your mind- there was this bad news call. It was his sister's voice, smothered in confusion, and something seemed to be the matter, but what? Markus was told, quite honestly, how Bert's body would abandon him little by little up until the point where only his sharp mind would remain. Markus recalled how the news had struck him during the long drive back home. He caught himself thinking about what this all meant to him. How would he see his brother now that he knew? How would it be to meet one another for the first time, knowing about this limited and unpredictable future? ALS. He had never heard about that desease and he would never (want to) get to remember what that English abbreviation stood for. Maybe it was something like ‘ahead life short’… Only fourty… A courageous wife, fine children... What next?

Strangely enough that first time wasn't too bad. Bert had organised a family gathering, the first one in a long series. These gatherings are still taking place but unfortunately Bert was the first to drop out. He would miss the stories of so many children and grand-children… According to Markus family gatherings are necessary memories when you want to know where you come from, who you belong to, but they are also sources of melancholia…

That first time after the facts, Markus can still see it. When his desease was yet unnoticed his brother took him to the far end of the vast domain. Slightly slower than they used to they strolled by over the gravel path past the pool house where a useless little bank awaited them. Useless indeed as they felt still too young and ‘apparently’ too healthy. As in a lecture, quite objectively, he talked about the desease, how he knew what would come, about the years, months, days remaining. And he said he would let things happen in the most ordinary manner possible. For his wife, for his children, for himself. He wanted to be the director of his life and we (his brothers and sisters) would be the extras. He didn't want anybody to say to him what to do. That agreement was readily decided upon but not always easy to execute.

My brother Bert's story is one of courage and love and it could never be mine. It is the story of the one person I'm going to miss forever. Never again I'll be able to talk to him from brother to brother, because in my eyes his suffering was far too big if you'd compare it to my problems. But maybe there was just enough space to cover it all: the smaller one's physical space the bigger one's heart, isn't it? Of Markus’s only brother remains a memory of converging intimacy, of respect and brotherly love.

The most painful of all was when the priest paid him a visit. By that time Bert, cherishing his open faith, was already limited in his speech and had arrived at the last straight line. The priest, trained as he was in giving senseless consolation, indicated what Bert could do once he would feel better. But that sort of opium, well, Bert just refused to take it in. He made it clear to that whistleblower from heaven that 'better' was no longer there and that the road back was blocked, once and for all.

How do you tell a mother that her son is being abandoned by his body? That in the end his nerves will refuse every possible command? This brought Markus and his mother closer together. When they met they could get their worries off their chests, their feeling of powerlessness over the eternal question 'why'? At times they held hands. She would become twice as old as Bert but marked by amnesia. But when she was still the mother Markus wanted to remember, she accepted what would come, above all because Bert had already accepted the inacceptable.

Markus said goodbye to the farm where the bedroom with their vast double bed -his and his brother's- was already long gone. That memory was now etched in his mind. He left his mother to the care of one of his sisters who's now looking after her. Life upside down: children taking care of their parents. Generations upset. The mind full of cobwebs and spiders sucking memories till nothing remains. You remember Bert, mother? To you he is the ALS son, to me the ALS brother.

- Wilfried VANNESTE


Translation: André De Laet

Source: Nieuwsbrief 153 – July, August, September 2011