Never lose hope
If someone has a motto in life, almost lives by a mantra, then Noh Gourie from Paderborn is certainly the best example and the protagonist in this patient portrait. And as befits a leading character, he has already been allowed backstage with musician Xavier Naidoo, to shake hands with the national soccer team (including Thomas Müller and Mats Hummels), and to rap about his life under the spotlights in front of an audience.
Noh | Never lose hope
Yet Noh is just a normal young guy, except that he is ventilated and sits in a wheelchair. If one had closed one's eyes during our video call, one would never have thought that Noh was muscularly impaired or on a ventilator. The words crossed his lips almost as if of their own accord. The only drawback was the poor technical connection via the Internet. After the interview, I made a mental note to myself: WOW, you can take a lesson from that! What an inspiring and motivating attitude to life. His secret for such a positive attitude to life actually sounds very simple: just music and faith in God. Music is his therapy, it makes him feel healthy and faith in God gives him strength, he is his best friend. Noh is quite clear about his:
"When I'm involved with music, I forget everything around me. Then I feel healthy. Problems and worries are then blanked out."
However, the ideal time for his creative highs is perhaps a little unusual. He confesses he is a night owl. His studio is both his home and creative workspace. Accompanied by a 24-hour nursing service, his self-determined day begins at 10 am with his morning therapy: physiotherapy five days a week and ergotherapy on two days in addition. And then it's finally time for breakfast. (On the day of the interview, he had yoghurt and stuffed vine leaves, prepared by his mother.)
Variety comes next on the daily agenda. Either out in the fresh air or chatting with friends and acquaintances via the Internet. The creative process usually begins at 10 pm, but can vary. Every musician and musically interested person will now nod their head in agreement - creative work is not just about getting a job done, as Noh aptly summarises. His musical plan is as follows: finding melodies, writing appropriate lyrics, recording songs, mixing sound tracks, creating CD covers and finally editing videos.
And the effort pays off: with a total of over 15,000 subscribers on the various social media platforms who eagerly follow Noh's life and music (as of May 2021). The biggest success of one of his songs is reflected on YouTube. 66.549 viewings of his song: WAS WÄRE WENN (WHAT IF). In this song, Noh describes his life. All the things he would do immediately without having to think about them - if he were healthy. Spontaneous visits to his mother, simply baking a cake for his sisters or finally pursuing his sporting hobbies are just a few of the items on his agenda. All just normal things.
When you combine the rap songs with the impressive videos, you wonder: how does he do it? He lets us in on his secret in our conversation. The solutions are twofold, on the one hand, the self-developed breathing technique and, on the other hand, the very specifically customised combination of medical aids. "I looked around for a long time, but have been doing rather well with the FAHL products for two years now." Anyone who is now curious can view his breathing technique video on Facebook. In brief: breath in, accumulate air and then let the air out in one burst. As Noh confirms, this takes some practice, but the results are worth hearing - a powerful voice for rapping.
Active participation in self-help groups gives Noh additional strength. One benefit of these groups is the mutual support and great understanding for each other. He also works closely with the German Duchenne Foundation. Joint projects, such as the video for the song VOM HORIZONT ZUM MARS [FROM THE HORIZON TO MARS] can be found on YouTube. After a good hour of interviewing, the fascinating insights into Noh's life drew to a close. During the final minutes, the topic of everyday pitfalls came up, such as an itchy nose. And one could not have formulated dealing with pitfalls and the resulting changes any better:
"No obstacle has the power to stop me. I decide whether I walk on or fall. Being happy is a conscious choice."
Thank you Noh for this strong statement!
Noh has been suffering from Morbus Duchenne since his childhood. Duchenne is a neuromuscular disease. Unfortunately, this entails the gradual deterioration of the entire muscles in the body. In spite of a low life expectancy, Noh was able to happily celebrate his 31st birthday in December 2020. During a routine check-up, the physicians found that the CO2 concentration in his body was too high. As a result, a tracheotomy followed at the age of 14. Since then, Noh is also ventilated and can only move his head and two of his fingers. Andreas Fahl Medizintechnik-Vertrieb GmbH has been his homecare provider since the middle of 2019. "Modern, creative and reliable" are the words Noh spontaneously associates with the Fahl company. Through the support of this reliable partner, and here a thank you goes to field representative Christian Heller, Noh was able to significantly improve his speaking results. The results can be heard in the truest sense of the word, on two rap albums and inspiring videos to be precise.