Struggling for Silence: The Story of Gaby Olthuis

[Tinnitus Talk]

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00:00 Prologue
03:45 Part 1 – Tinnitus & Hyperacusis: Twin Beasts
25:38 Part 2 – The End of the Line
40:30 Part 3 – New Hope: Raising Awareness

For many of the 10% or so who have tinnitus, it's a condition that – although bothersome at times – can be coped with. But about 1-2% of the population feel severely debilitated by their tinnitus, often in combination with hyperacusis (sensitivity to sound). That's millions of people worldwide. Some of those people struggle so much that they no longer want to live. This is one of those stories.

What does it mean to struggle so intensely with tinnitus and hyperacusis? How are people who suffer from this treated? Why are there no better treatments available? How can we educate doctors to better help tinnitus patients? What more should be done in terms of awareness raising, prevention, and research?

These are but a few of the questions we discussed while sitting down for an in-depth interview with Joan van Baarle, the mother of Gaby Olthuis, who in 2014 was granted euthanasia because of her tinnitus and hyperacusis.

Joan created a foundation in her daughter's name, the "Stichting Gaby Olthuis Fonds." Any donations go directly to research. Joan's book about tinnitus is sold here. [Both in Dutch only – for now.]


If you are struggling with tinnitus and/or hyperacusis, please get help through:

• Your family doctor; make sure he/she is aware of the latest Clinical Practice Guidelines for Tinnitus
  
• National tinnitus associations; you can find a list in section 5.3 of the European Clinical Practice Guidelines for Tinnitus
• Tinnitus counseling services (ask your doctor whether these exist in your country)
• Local support groups; these are often run by tinnitus associations
• Online peer-to-peer support: Tinnitus Talk

If you are thinking about suicide, please get help immediately! A list of national suicide hotlines can be found here.

 

[Hazel]

We hope you find our interview with Joan moving, informative, and inspirational.

I'd like to give you a bit of background on what it takes to create such a video. There's a lot more that goes into it than meets the eye.

In terms of financial costs, please find the breakdown below. All of this came out of my own pocket, because we did not have funding for this project. If you want to help us cover these costs, you can donate below.

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Then there is of course the time we spent on this project. As you know, we are all volunteers, so we work on this during our precious free time; time that we could just as well spend with family, friends or watching Netflix

Please find below a breakdown of hours – this is excluding the hours for work that we outsourced, i.e. camera crew and subtitling, so it's just our own volunteer labour.

 

[Jack Straw]

Fantastic video!

Great job @Hazel and @Markku!

 

[jay777]

Thank you everyone.

 

[Starthrower]

Wow. Excellent and so emotionally moving. My thanks to @Markku and @Hazel...

I have so much respect for Joan and her strength to stand up and talk.

I donated to this effort Hazel and hope others will also. Thank you for spending your own money and time for us.

 

[Markku]

Thanks so much for the positive comments thus far!

We really gave our everything to this project. At times we had great technical difficulties to overcome and it felt like we might not be able to get it out there for everyone to see. Thankfully, the hard work paid off and here we have a fantastic interview that our own @Hazel so beautifully did. I'm in awe of her.

I also want to humbly thank @Starthrower and @Manny for being the first two members to support us today. We thank you for both of your donations!

We'd love to promote this interview on social media, especially on Facebook. We could run a few promoted sponsored campaigns for the interview, to get it in front of more eyeballs, but that costs money - hence all donations are very much welcome! Even $5 helps more than many realize.

In any case, I encourage everyone to share the interview on your social media / support groups, and to talk about it. Because... the movement starts from each of us.

 

[Tanni]

Donated, and would encourage others to do so as well - this shows the true devastation of tinnitus for many, and it would be amazing to get it in front of as many eyes as possible to continue Gaby's legacy.

Thank you Hazel for all your efforts to promote this condition, and much love to Gaby's family.

 

[Starthrower]

Thanks so much @Tanni.

 

[Autumnly]

Thank you so much for sharing how severe tinnitus and hyperacusis can be, I hope more people will understand that we're not over-reacting. Just commented on the YouTube video and your Twitter post, I don't have a Facebook profile anymore but I hope many other Tinnitus Talk members will leave positive comments on there!

 

[gorzakus]

Thank you so much for the work making this amazing video @Hazel and @Markku!

I do have a question, in the video her mother stated she tried everything for her hyperacusis and tinnitus and even went to Israel. Did she also try to cut her auditory nerves? I read there is around a 50 percent chance the tinnitus is gone afterwards.

 

[Jazzer]

This video is truly awesome.
The majority of tinnitus sufferers fortunately have a more mild version of this wretched thing, but some have it so severely as to be 'hell on Earth.'
This amazing film describes this condition very accurately.
Poor dear Gaby - she tried so hard to cope for the sake of her family.
Poor Joan - having to watch the lovely daughter she gave life to suffering in this way, and feeling so helpless.
Identifying with Gaby made this a tough but essential watch.
I am very proud of Tinnitus Talk for tackling such a difficult project, and making this documentary.
Hazel coped brilliantly - Markku's editing was superb.

Tinnitus took away my entire career, and now my adorable wife in her mid seventies works full time to support us.

Donating at this time is not possible, but I vow I will leave a legacy.

Well done all concerned.
xx

 

[Jazzer]

Thank you so much for sharing how severe tinnitus and hyperacusis can be, I hope more people will understand that we're not over-reacting. Just commented on the YouTube video and your Twitter post, I don't have a Facebook profile anymore but I hope many other Tinnitus Talk members will leave positive comments on there!

There are many on this site who do not understand the aspect of severity.

Not over-reacting... well said.

 

[TheDanishGirl]

Lovely interview, although hard to watch. I felt Joan's pain for her daughter. Gaby's pain while she was alive... the heaviness in the chest from it all.

It is a tragic story but one that needs to be told and shared with the world. People need to know that tinnitus is not always just a slight ringing in the ears, but that it can be so profound and bring with it other issues like hyperacusis, that altogether can have a devastating impact on all aspects of a person's life.

I personally like how hyperacusis also played a good part in this interview. I can really relate to much of what Joan tells about how Gaby expressed her pain with hyperacusis. How it is not just a sensitivity to loud noises, but also can be painful, and how you can't handle birthdays/parties, because several people talking at the same time can be such an overwhelming, a painful sensation that you just cannot deal with it. It is very hard to get people to understand this, and I applaud Joan for trying.

Thanks again to Markku and Hazel, for all the hard work you put in this. I applaud you. You have done amazing. The interview is heartfelt, authentic, beautifully and respectfully done. Just perfect! I am pretty low on cash this month and the coming month, but I'll be sure to donate a little sum.

 

[Jazzer]

In any case, I encourage everyone to share the interview on your social media / support groups, and to talk about it. Because... the movement starts from each of us.

Shared on my Facebook xx

 

[Starthrower]

Tinnitus took away my entire career, and now my adorable wife in her mid seventies works full time to support us.

Donating at this time is not possible, but I vow I will leave a legacy.

Well done all concerned.
xx

@Jazzer you are a legacy. Don't you worry about donating at this time. You and Sylvie have been very generous so just let those that are able to donate do so when we can. Your story on YouTube has already helped so many people.

@Hazel, I think that @David of the BTA should interview you for their website and members. The process you went through to bring Joan's story to life is so important.

 

[Candy]

Donated. Thanks for your work. I can't bring myself to watch it though...

 

[Jazzer]

@Jazzer you are a legacy. Don't you worry about donating at this time. You and Sylvie have been very generous so just let those that are able to donate do so when we can. Your story on YouTube has already helped so many people.

@Hazel, I think that @David of the BTA should interview you for their website and members. The process you went through to bring Joan's story to life is so important.

Dear Star - your kindness never fails to touch me.

Having been seriously misunderstood recently it is comforting to know that you and I are still on the same page.

love you always
Dave x
Jazzer

 

[GSC]

Loved all of it and thought you guys did what you were setting out to do and then some. I really hope this is shared far across and wide, because this story needs to be heard and deserves to be. It encapsulates so many people, and when I am free, I plan to do my best on sharing this, like linking researchers and Twitters and such.

Please, for those of you are able, get this out there. Share on Reddit, share on Facebook, Twitter - do not let these hard hours of work go unnoticed. Share this with guests who have been on the podcasts and such.

I am sadly short on cash, as I am the main provider of my family, but I plan on accumulating and saving for a generous lump sum at the time I'm able. I really want to be one who is able to donate more than five dollars, because your guys' hard work and this condition are deserving of it.

 

[Starthrower]

Donated. Thanks for your work. I can't bring myself to watch it though...

@Candy if you want you can start the interview at say the 50:00 mark and hear what @Hazel and Joan spoke about regarding the foundation and her interest in staying involved with tinnitus work. It is very touching and you can understand Joan and her wonderful attitude and understanding.

@GSC no worries and being the provider for your family is so important. Not now but, even the five dollars counts a lot!!

 

[GregCA]

What a great video.

I'm grateful to all of you who made it possible. I don't want to list names for fear of missing someone by mistake, but you know who you are.

It amazes me that you were able to create a documentary that is on par with the kinds of documentaries that are broadcast on huge national TV channels (CBS, ABC, NBC, etc...), especially on such a sensitive topic.

@Hazel, I don't know what you do for a living, but journalist/interviewer should be on your path somewhere if it's not currently: you are a natural.

 

[lymebite]

@Hazel - truly superb. Thank you so much for the incredible effort. And special thanks too for the subtitles, since like Gaby, in addition to tinnitus I am challenged with severe hyperacusis and even the lowest level volume is not possible.

As others have done, tomorrow I will complete a donation to help defray the expenses.

 

[OnceUponaTime]

What an excellent job you have all done in putting this video together. I am out of words. I thank you sincerely for all your hard work and dedication. The video looks professional, high quality and I appreciate the captions.

@Hazel, you are just beautiful inside and out. What a great job in interviewing her mom so respectfully and thoughtfully. Thank you for volunteering your time and skills for our community. How can we ever thank you? @Markku, thank you is just a humble phrase. What an excellent job in putting this video together. I know it took you guys hours and hours of hard work... It paid off.

I hope this video can send a huge wave of awareness for this condition across the internet, and reach key people that can actually help fund more research.

Gaby's story must be told. RIP beautiful Angel. You have your peace now.
Donating and sharing the link.

Once

 

[Don Tinny]

What is most remarkable about her mother and her family is that they really believe that Gaby had a serious health problem.

My family is also understanding (not my partner, really) but I am sure that if I committed suicide today they would think it was depression or that I had "other problems".

On the other hand, suicide is not an option because I have a daughter. I would never do that to her.

 

[Hazel]

Wow you guys have donated 320 dollars in the past few days! That's awesome and heartwarming

I communicated with Joan today; she has been reading the comments here is and is very touched by all your reactions.

 

[Starthrower]

Wow you guys have donated 320 dollars in the past few days! That's awesome and heartwarming

It is what we can do for you. I am so glad many others donated to your personal expenses.

Joan if you are reading this... thank you again. Your strength is making me stronger and wanting to speak out about the opposite of choice which I went through with a friend. It was brutal. And the outside world was cruel to me for speaking out. I understand.

This means attention for our needs for those with severe tinnitus which has always been crushed and not believed.

 

[lymebite]

@Hazel - I submitted a donation earlier in the week as promised. Very glad to see many people have contributed. I hope more continue to do so and that you recover all your out-of-pocket.

The value of the 105 hours of time spent seems priceless, maybe Melinda and Bill Gates could think of a number high enough but probably not us here on Tinnitus Talk.

 

[Starthrower]

@lymebite so cool, thank you!!

@Markku good idea to have the different segments for people.

Sometimes I just like to listen to segment 3 just to listen to the hope given by Joan and @Hazel.

 

[Jcb]

Thank you @Markku and @Hazel for all the hard work, it's such a heartbreaking story but as some have said a story that needs to be told and heard by everyone.

Thanks to Joan for having the bravery and strength to talk about this, the whole video was done with class and love.

I don't have the Facebook or the Twitter so unable to share, I will donate at the end of next month as funds are extremely tight of late.

 

[vermillion]

Congratulations @Markku and @Hazel for this project. The controversial YouTube video made by that journalist and which we all have seen, left many questions unanswered. In my opinion it was a clumsy and hasty attempt to present a serious matter which in the contrary is very well addressed and coordinated by the current interview.

 

[jay777]

Joan, you have a true understanding of severe tinnitus, thank you for all that you are doing.