Sophie van den Berg –
“September 4th, this day really ruined a lot. I got the results and had to live with MS for the rest of my life.” This is a line from a rap song by Nicky Dorder, who goes under the rapper name Salfa. In 2020, the life of the then 20-year-old got turned upside down.
It all started with a sore eye. Maybe there was a fly in it or a minor inflammation, Nicky thought. It rang a bell when he went on vacation and came back with a blind eye. After a hospital visit to the Amsterdam Medical Centre, he was diagnosed with Multiple Sclerosis.
MS is a chronic disease affecting the central nervous system. It occurs when the immune system attacks nerve fibres and myelin sheathing – a fatty substance that surrounds healthy nerve fibres – in the brain and spinal cord.
Watching from the sideline
When Nicky heard the news, he grabbed life with both hands. “I didn’t shed a tear and I didn’t get angry. I accepted it right away and went out to chill with my friends.” He had not expected this of himself and didn’t think he was good at handling his emotions before that.
Although Nicky took the news quite well, Nicky’s mother was devastated. “The worst thing is that you see your child in pain and there is nothing you can do to help. If I could, I would take over all the pain and the disease. Rather me than him.” Nicky played sports a lot and could often be found playing football outside with his friends. But there was a period when he couldn’t run, barely even walk. Then he would stay and look at his friends who could.
After a while, his legs started to work normally again. At this point, his outlook on life had completely changed. “Whether it was raining or not, being on the pitch again meant a lot to me. I’ve really come to appreciate the little things.”
Being ashamed of spasms
During the period when Nicky got diagnosed with MS, the Netherlands were in COVID-19 lockdown, so he was mostly at home. For most MS patients, the illness comes with spasms. Nicky sometimes started having them at his part-time job. He then shamefully hid in the toilet, so that his coworkers wouldn’t see him like that.
However, Nicky didn’t want to do this in a heavy way. Instead, he wrote a text and turned it into a rap song. He then posted the song to his Instagram account. Before he got diagnosed with MS, he was never into making music. “I wanted to write my story for myself, but I found that most of the sentences rhymed. Then I made a rap out of it and decided to make it known to my circle this way.”
MS is a complex disease, some call it the disease with a thousand faces. Bodily functions start working again, are partly working, or symptoms never get better – it differs from patient to patient. While in the Netherlands approximately 34.000 people are diagnosed with MS, no treatment is yet available in the country. Therefore, many patients choose to get treatment in Russia, Mexico, or India. Nicky chose to go to Puebla, Mexico. His treatment cost 60.000 Euros, an amount of money Nicky’s family couldn’t provide. So he started a crowdfunding campaign online. After two weeks, he had to remove the link to the website. “I never expected I would reach the amount so quickly. The feeling that entails is hard to describe, but I’ve never been so grateful,” says the 22-year-old.
Before his operation, Nicky went to physiotherapy. “This was mainly to get physically stronger for the treatment in Mexico”, says his physiotherapist. He has some recovery to do and he needs to keep working out and work on his mobility. But according to his physiotherapist, Nicky is very strong, so a lifetime of physio is not the case.
Nicky is currently being treated in Mexico. His healthy stem cells are harvested, and his entire immune system is shut down by chemotherapy. After this, the healthy stem cells need to be placed back in his body, which ensures that a new immune system is formed.
When he returns to the Netherlands, he will have to isolate himself for three months. With his immune system completely shut down, any small bacteria can cause him to get an infection that he might not survive. His mother will take care of him during this challenging period. Nicky’s mother has faith in the recovery of her son: “I have to feed and wash him, to take full care of Nicky. It will be a rough period, but I also see it as a rebirth. A new beginning.”