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Memory
They stay in San Diego for five weeks. “We walked him through the corridors of the hospital and had to ask him multiple choice questions to find out what else he knew. “Are we walking in the park, the police station, the library or the hospital?” we asked him. “Yes, in a park,” was his reply. He had to learn everything all over again. He didn’t recognize his sister, didn’t recognize his brother, didn’t know who we were. Everything turned out to be gone.”
Bernadette still thinks it might come back. “At first I thought: this will be all right. There’s fluid in his brain. But gradually we found out more and more things he didn’t know. We were talking about Christmas. He asked what it is. We explained that Jesus was born then. “Who is that?” Jur asked. He really didn’t know anything anymore.” Jur was brought to the Netherlands under medical supervision. He was slowly getting better.
Taal
Bernadette sometimes tries to imagine what it must be like for Jur. “He has stepped into a blank, strange world. You know the language, but not the customs and the road. This has made us look at life differently.”
It does appear that Jur can remember new things. “And we see that there is muscle memory. He quickly picked up cycling and skiing again. We put Jur in the hospital behind a piano. He knew another song, Rhyme from another summer, to play. That was very special.”
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But language brings difficulties, explains Bernadette. “When I asked: ‘How did you sleep?’, Jur said: ‘On my back’. Language has layers. That layer was completely gone. He also had no idea what the difference was between “I’ll call you in a minute,” “I’ll call you later,” or “I’ll call you later.” You never really explain that, it’s intuitive for us. He thinks differently about language. But things are getting better, although we still experience surprises.”
Mourning
Jur has become a different person, says Bernadette. “His intelligence is still functioning well. He is much more intuitive and thinks less in boxes. You can also see that with his peers. Jur has that to an extreme degree. Friends say he is still the same sailboat, but the captain has tacked.”
Bernadette started taking courses on grief counseling. “At first I thought that mourning is only there when someone dies. But you have living loss in death loss. We have to say goodbye to the expectations we had. It is saying goodbye to how you imagined life to be. That is absolute grief. It is part of shaping your grief and your loss. The guidance has given me insight. One thing is certain: everyone will get grief on their path. We are not prepared for that at all.”
She continues: “With the family we are well understanding and going through this process. I have started to live so much more consciously. It is a lot of pain, but I now realize and know that pain also means growth. It’s not fun, for sure. But if you live it right, it can also bring beautiful things. If there’s one thing I’m proud of, it’s that we’ve found a new balance as a family.”
ItsME foundation
Every minute someone in the world is affected by encephalitis. For meningitis, that is even four to five times as much. A large part of them die. In 2019 Jur founded the ItsME Foundation. “He started doing this to fund research. This year we are organizing the Walk with ME for the third time. On Saturday we will run 50 kilometers with about 140 runners to raise money for research. We raised over a ton last year and are funding six studies, involving seven academic research centers in five different countries. That was the first main goal of the foundation.”
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Research
Bernadette increasingly came into contact with people who had experienced the same thing, who were looking for information or for other fellow sufferers. “There was a great need for contact. In January I organized the first fellow sufferers day, with 110 people together. That day was greatly appreciated. We will organize that every year.”
The foundation is increasingly found by fellow sufferers, Bernadette notes. “That is very special. I received an email from a mother, and her daughter recently passed away. I got into a conversation with her and told her about Walk with ME. Five minutes later she registered. That gives so much energy. More and more people are happy with this initiative. It touches me enormously. It is often about recognizing too late. If recognized too late, it is irreversible, especially the bacterial variant. More research needs to be done. That’s what we’re going for.”
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Jur and his father at the Walk with ME 2022.
To combine forces
Bernadette emphasizes that there are two groups affected by meningitis and encephalitis. “I also realized that through the email from that mother. A group has living lossand a group death loss. I would also like to have contact with those people. When I dream, I dream that there are two contact days in the future. A day for people who have really lost their loved one and another day for people who live with permanent residual symptoms of this disease.”
Jur is still developing at a fast pace and is brimming with energy, says Bernadette. He has completed his two bachelor’s degrees and is writing a book. “We just got back from a clinic in Utah that focuses on neuroplasticity. We are taking it step by step.”
Because only together can you get through this. ‘The power of WE is stronger than the power of ME’, is the slogan of the foundation. “Let’s join forces and fight meningitis and encephalitis together. With each other, with people who have been touched, and everyone who wants to commit to this goal.”
Do you want to support Jur? Below you will find more information.
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2023-08-31 05:03:36
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