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Two generations on the big screen

Living with Usher and at the same time wanting to be a role model for others

On the International Usher Awareness Day 2021, the documentary Stilte in de Nacht [Silence in the night] had its premiere on television and after this it was shown through YouTube. This made the documentary accessible for the general public.
Lisanne van Spronsen and Milou op ten Berg, the makers of this documentary, followed Joyce de Ruiter and Nikki de Punder with their cameras for a few months.
Two generations with Usher. Both strong women who hold a positive view of life, who know what they want and who act as role models for their own generations as well. 

Sandra Vijverberg talked with both ladies to hear how they experienced their participation in this documentary.

More than a school project 
Joyce was in particular positively surprised by the professional way of working and passion of Lisanne and Milou and that it turned out to be a lot more than just a ‘school project’. Professional photos were made for the promotion and film poster and Lisanne and Milou started a crowd funding action, which enabled them to make a very nice donation to the Stichting Ushersyndroom (Dutch Usher Syndrome Foundation). The ladies did not limit themselves to making the documentary, but they also made various podcasts for Stilte in de Nacht.
As speaker and author, Joyce is used to sharing her story on stage and in her book. Accepting the presence of the camera near her made her feel vulnerable, but at the same time it was a nice thing to do.
Nikki really liked being part of it. She tells us that she does not talk a lot about Usher and about what it means to her. However, especially the approach of Lisanne and Milou made things feel very safe. “Because they managed to make me feel so comfortable, I dared to honestly answer all questions.”

On the big screen 
The question of how they felt about seeing themselves on the big screen and later on television makes Joyce laugh out loud. Terrible!”, she laughs. It really is very strange to realise that a lot of people who are completely unknown to you know about you.” Nikki thought it was very special. “It always is strange to look at yourself, in particular on a film screen of 50×25 metres!” The documentary had already been shown to the ladies when it was nearly finished, later at  the premiere in the theatre and then again recently on television. Nikki continues: “We watched the television premiere together at the home of Lisanne’s parents. My parents had also come, Joyce was present with her family and, of course, Milou was there as well. This made it feel like a kind of reunion.”

Role model for fellow-sufferers 
The ladies received really a lot of reactions to the documentary. Very nice and positive reactions, but Joyce also received a reaction from someone who has a person suffering from RP in her environment. Joyce: “She told me that his person has so much problems with this, that he or she finds it unbearable to live with the diagnosis. This was really heavy. On the other hand, it confirmed to me how important it is to have role models in fellow-sufferers. Role models who can inspire you, who can support you. Persons who inspire me personally give me a lot of strength every day again. Hopefully Nikki and I can also be that for our fellow-sufferers. To me understanding this is the best thing the documentary has brought me.”

In the spotlights 
Joyce tells us that, despite the fact that this also is a part of her work, it sometimes is quite difficult for her to always put herself in the spotlights again.
Trying to find the spotlights for the Usher Syndrome Foundation is something she does for the good cause: It gives me the confirmation and the strength that we, people suffering from Usher, have to keep shouting from the rooftops what the impact is of this disease and that more money is needed for treatment.”

Inspiring for others
Nikki received a lot of reactions through Insta from friends as well as from people unknown to her. Besides, the documentary resulted in a nice article about her in the newspaper (insert link). This article led to an invitation for the talk show ‘M’ of Margriet van de Linden (insert link) and she also visited Anky van Grunsven. This has resulted in a steady friendship.” She continues: “this is again one of the best things that participating in this documentary has brought me. Apart from this, a lot of people will by now understand why I sometimes cannot follow things, do not hear well or why I sometimes am a bit careful in the dark, for instance. The very best thing is, however, that there are people telling me that I inspire them. This never was my intention, but it certainly is very nice to hear.”

Silence in the night (Stilte in de Nacht)
The documentary Stilte in de Nacht can be watched with Dutch and English subtitling

Spanish film festival 
By now, it has become known that Stilte in de Nacht has been selected for the Spanish film festival Certamen Raras.” This special film festival is about rare diseases and health.

The jury will announce the best documentary on 15 November 2021. Also an audience prize will be presented for which can be voted from the Netherlands as well. Voting for Stilte in de Nacht can be done through via the button below. You can vote for Silence in the night via the button below.

Read also:
Colour me blind

Trailer Silence in the night

The documentary Silence in the night, made by Lisanne van Spronsen and Milou op ten Berg, is ready. The premiere has been postponed due to the COVID-9 measures.

The trailer can already be viewed, with subtitles.

READ MORE

The world of Sander

As a result of Usher Syndrome, Sander Koomen’s world is shrinking in terms of hearing and sight loss. Sander still has big dreams and prefers to inspire others and set an example for his children.

KNGF (Royal Dutch Guide Dog Foundation) made an inspiring video of Sander and his guide dog Brigthy in collaboration with Eukanuba.

Unfortunately, this film is spoken in Dutch and does not have English subtitling.

Séverine sees it differently

Séverine was diagnosed with Usher syndrome 20 years ago. Her deteriorating lost of sight and hearing does not make everyday life easy. However, she still trains for the alternative Four Day Marches, together with her buddy. #SupportofSport

 

Unfortunately, this film is spoken in Dutch with Dutch subtitles. Turn on automatic subtitles in YouTube

 

The small world of Machteld Cossee

Lisa Blom and documentary maker Hetty Nietsch followed the life of Machteld Cossee for six years. They stayed at the home of Machteld and her family and so recorded intimate moments in their lives.
How do you live your life knowing that one day your world will be quiet and dark? The central figure in the documentary ‘The small world of Machteld Cossee’ knows that she cannot escape her fate. Still, she tries to live a normal life for as long as possible. This results in touching moments as well as frustrations and rows and moments of fear for the future.

Summary
On her seventeenth birthday, Machteld is told that she suffers from Usher Syndrome. At that time she already is hard of hearing, but she will become blind as well. This message is a great blow to the family. Still it is rarely mentioned after this. Her father is a general practitioner and finds it hard to accept that there is nothing he can do for his daughter.
Machteld herself tries to build up an as normal as possible family life with her boyfriend and not to give in to her fear. Machteld: ‘When I think of it, it literally seizes me by the throat. So then I think, what will we have for dinner this evening?’
In the film we see what Machteld sees and hears, how she scans her surroundings, how she slowly becomes an outsider in her own life. How she fights with the desire to give a meaning to her own life. Machteld’s world is small already. There always is that fear: when will my hearing and my last bit of eyesight definitely disappear, making my world as small as it will get?

The documentary was shown earlier at the Dutch Film Festival in Utrecht on Wednesday 1 October 2014.
This documentary had its première on television at NPO2 broadcast by the VARA on 9 February 2015.

*The documentary has Dutch and English subtitling