Crippled by Sound... Uncensored Truth About Tinnitus

That will be the title of a book (more like a booklet maybe), which I intend to publish eventually.

I never wrote a book before and right now I don't have a slightest clue how to even go about it... but I will eventually find all the ins and outs.

Being debilitated by Tinnitus for about 2-3 months gave me a glimpse of a dark, ugly and horrifying world, that I never even knew existed and was very fortunate to have escaped from....just like most people, I never even heard of Tinnitus before then.

First off...I just can't believe that in this day and age, when everyone seems to be worried about making sure that death row killers and rapists don't experience any undue "inhumane" suffering on the day of their execution, we literally ignore a group of people (about 5% of the Tinnitus population), whom literally get brutally tortured to death and nobody seems to care.

I also noticed a tendency in the medias towards downplaying the suffering of those whom are simply too far beyond any coping or habituation schemes and focus on the success stories instead.

Not quite sure if this rather rosy picture is painted in effort to cover up the unwillingness of those in power to put some real money into Tinnitus research (which could produce an actual cure), or if the coping industry has too strong of a voice...could be as simple as not wanting to create panic, but that is the wrong approach in my opinion.

Anyway, my book will be dedicated to the sufferers themselves, but it really isn't intended for them....they already know the permanent hell they are in.
My book will be aimed at the people, whom are close to those debilitated by Tinnitus (families, friends) etc..

I'm also looking to raise awareness about this condition and hoping that it might inspire some future bright minds into trying to find a real cure for those who suffer this 27/7 nightmare.

In my opinion, those are the true walking dead, unlike the popular TV show.

I wish, that I had the clever writing style of Bam (whom I hope is still with us), but unfortunately I have to make do with what I have.
My concept for this book is rather simple..it will be divided int 2 parts:

A brief introduction, few analogies so those not affected are better able to understand and some needed explanations about the mental state of those affected...
I was thinking about the best way to inject some raw reality into this and I decided that the best way to go about it would be to use actual quotes and partial posts (no names published) of the sufferers themselves, which I collected from various Tinnitus sites and forums such as TT.

They can paint the horrid reality of what they are going through themselves much better, than anyone else...this will be in the second part.

I do have a rather rough copy already finished and I decided to let couple of my friends to read through it..one of my more sensitive friends actually got sick from reading it and spent the next hour in the bathroom throwing up and having a panic attack of sorts...

I felt very bad at first, but then I realized, that this is actually a good thing...if the truth (not a word of exaggeration in my book) can horrify people in such way, that they experience a fraction of what the Tinnitus sufferer will most likely experience for the rest of their life, it might do some good and maybe it can get otherwise indifferent people to push politicians for more money towards Tinnitus research, along with being more vigilant about protecting their ears.

In closing, if you are looking for any kind of positivity, this won't be the book for you...there is none.

This book will speak on behalf of those who's lives had been destroyed from the ground up by this horrid condition..there is nothing positive about that.

I'm not sure about the time frame here as I have never done this before, but hoping to have something going within the next 6 months.

Feel free to give me any suggestions or any criticism... I'm pretty sure I can take it.

Last but not least... I'm not looking to make any money off this.
I will probably start out of pocket and if I can get some kind of a deal with a publisher, I would be very happy just to cover my costs.

Why am I doing this you ask?
Part of it is my immense hate for Tinnitus and my need for revenge... I want to eradicate Tinnitus like you would eradicate a cockroach, for trying to destroy my life.
The other part is my realization, that those who are unable to "habituate" get often shunned even by the Tinnitus community itself.

They are made feel weak and they are made feel like there is something wrong with them for not being able to cope, just because other people can.

Again, Tinnitus is a very subjective experience, where genetics, personality and built in levels of tolerance play a big part (amongst other things).

I feel like those people need a voice, that they are not getting right now.

 

Writing a book can be a huge undertaking if you haven’t done it before. What you can start doing today is begin an online blog. You can use a free site such as Wordpress or you can have your own domain that accomplishes both your desires at the same time.....getting the word out and documenting your journey such as what this person did: https://rapunzeltinnitus.com/

As you develop material you can start contributing to ThoughtCatalog https://thoughtcatalog.com/writers/ where you can write your thoughts. Many of these writers take this experience and go on to write their own books.

Small steps today lead to giant leaps in our future.

 

yeah it sucks. welcome to hell.

At least there are multiple companies working towards a possible cure. Just look at what they are doing, they can know regrow mammalian cochlear hair cells. WTF that's amazing. There is a real possibility that we may be cured within the next few (hellacious, torturous, completely effed up) years. Just hold on to hope. Hold on to your life.

 

I like your idea, of trying to raise awareness for tinnitus. Be the voice and let it be heard. No one here is shunning anyone that cannot habituate or cope. Our goal/My goal is to help people live their lives and move forward. Possibly not all can habituate, some (including myself) have habituated. There is no shame in it at all, if folks have not habituated or having a hard time coping. It's hard to cope when hell is screaming out of your head 24-7.

I simply try to motivate all to move forward and keep doing it......

I still like the idea of a book, and hope it reaches and teaches the masses.....

 

Dadgum you've had T since '88? I was 2-3 years old.

 

Over 30 years man. I want this horror to end and been wanting it to end for over 3 decades. It takes lots of guts and courage to fight this devil daily....

 

damn sir, God bless. there's not a little rating symbol to express my admiration of your struggle. at least there's some truly cutting edge medical stuff going on right now. It may be soon, it may be never. if that doesn't pan out then there's always the Resurrection of the Dead and eternal life.

 

Thank you Fish...reaching the masses would be ideal, but even if it does not, it still might save someone from having their life turned into a nightmare with no way out by protecting their ears.

 

Wolfears - I seriously want you to write your book.
There is nothing wrong with your concept or your writing.
You speak with great fearless integrity.
Please get on and do it!
Dave
Jazzer

 

.....er......maybe......?
It’s a concept.
I won’t bank on it.

 

Good luck with your book. Although I don't agree with the premise I still respect you for doing something you are passionate about.

Just my 2 cents of actually writing a book:

• Getting published is easy now. Being interesting and getting marketing around a published work is hard.
• There are local and national writing workshops that you should investigate if you are interested in writing. The services that they offer are invaluable.
• The hardest part of writing books in the medical/science world will be the research needed. Googling stats and studies only scratches the surface of whats happening. If you don't have all the information and make the "case" with the correct information it will fall flat. You could spend a solid year or more just doing the statistical and scientific research.
• You need to get buy in from ENTs, Audiologists, Neurologists for quotes.
• I would have a pretty concise "ask". Raising awareness is good but a guide to help the cause is critical.
• I know this is no going to be popular but you also should approach family members where family/friends metmbers committed suicide or attempted it. Obviously do it with the utmost respect...

Good luck man on your journey. Writing can be so rewarding and there are lots of people/groups out there that can really help!

 

But what is there to gain from such a book? Those who suffer need hope and help, not doom and gloom.

Everyone needs to exprsss how they feel at first, that’s a good thing. However nothing moves forward until we move forward.

3 months is early days still, if you take the positive advice from some of the success stories here you might regret writing it. The truth sometimes only comes out after you’ve been through the whole journey, including the better bits, and it does get better for most of us.

 

Hi there, I'm a horror story. A book like this could raise awareness not only for tinnitus in general but for how horrible and debilitating it can be. Like you said it gets better for most but not for everyone. Mine has gotten significantly worse over the years. Let's raise awareness for the minority that can't go back to a normal life, that has to make tremendous sacrifices or that is simply not able to enjoy their lives as much anymore. We need to take those people serious. You wouldn't tell someone with CFS that is homebound to just think positively. You wouldn't call the documentary 'Unrest' about CFS doom and gloom, it's simply talking about how this condition can affect people. Obviously this book wouldn't contain stories from new sufferers as it's common for them to struggle in the beginning. But there are millions of people with tinnitus that affects their everyday life, roughly 2 million people in the US alone report their tinnitus is so severe and debilitating, that it impairs their normal daily function. There are millions of us that contiue to struggle after years and we need to share our stories as well.

If I remember correctly @Wolfears tinnitus has improved over time but he knows how horrible it can be. To me it sounds like he wants to raise awareness but is very much aware that tinnitus can eventually get better. Obviously, if writing this book has a negative impact on him I would urge him not to write it. But I can't deny that it's comforting to see someone trying to raise awareness for the severe cases. So I don't see why he should regret writing this book (except if it has a negative impact on him).

@Wolfears thanks so much for all the hard work and time you must have already put into this project, I personally think it's a good idea, it doesn't take away form anyone's success story and is simply honest about the fact that tinnitus can be severe

 

@dayma I agree and I also believe that @Wolfears could write a book, but an acceptable book that contains all the conditional causes of physical related tinnitus would be 6000 pages long. I have over 1000 highly professional medical studies saved and it's far from having all information on physical tinnitus. Facial includes over 500 conditions that can have association with tinnitus. A highly professional medical symptom checker can list hundreds of interacting associations with just something like dystonia.

 

I am not saying he can or can't write a book. I don't know the person. I hope he does well etc..

My point is that if you are going to write a book saying there is a lack of research or understanding of T then you need to be able to back it up with data. Put something in there that's wrong and the market itself will attack it.

 

You will need people's permission to publish their posts. Even if you make no money from the book, the posts are still the intellectual property of those posters. Leaving their names off does not remove this moral and legal obligation.

 

@dayma

I understand your well considered thoughts, sorry for the confusion.

 

Totally right. This is why I would encourage anyone looking to getting into writing to join a local writing group. They are all over the place and they can help you navigate the legal of writing as an example. They also are great as you can have others proof read your works that come from all different perspectives and world views.

 

I had briefly looked into that one and from what I understand, once it is in public domain (social media, forums etc), it is a fair game.
If youre right however, tracking down some authors might be a challange (old posts, author already dead..etc)

Either way I'm not looking to piss anyone off..when it comes to this forum anyone can feel free to tell me not to use any of their stuff and I will respect it.
I might just have to stick to TT only in that case and shuffle some stuff around...
I don't see that as a huge obstacle.

 

Yes I'm very much aware of that and I won't be falling into that trap for sure.
There will be no statistics or studies quoted..
In the book I actually encourage people to do their own research when it comes to that kind of stuff.

All I'm really doing is offering a glimpse into the minds of those debilitated by Tinnitus, along with their own accounts.
Simply nothing to be attacked there.

 

@Michael Leigh wrote a great book/article and a lot of hard work went in to it and caused alot of stress perfecting it as he does so well.
He sent me his copy and put it up on here if I remember right.

If you think you can pull it off then that is great, maybe more of a horror story side of tinnitus would make a good Awareness Article .
love glynis

 

Thank you Jazzer...you are also one of the great Tinnitus warriors along with Fishbone and Ed209...
I really hate to see you guys suffer with this and no matter how well you are taking it, it breaks my heart.
The main thing that is stopping me right now is time....have to work so I can eat and its a busy season right now.
I'm pretty sure I will have to make many phone calls, make right connections etc...very time consuming for sure.
But I promise I will get her done.

 

A truly great idea to collect some potted autobiographies from some of us who suffer so much, and have lost so much.
I would willingly write a piece if you wished, and so would many others, to get our stories out there in the public domain, to raise awareness, and get the man in the street to at least consider our pretty bloody awful plight.

 

“Wolf - as you probably know - I am not remotely religious - however, gawd bless you anyway - I do believe you will do it for all of us !!”

 

Sounds good. Good luck man. Maybe the process will help distract your mind from T a bit

 

@Wolfears

“Tinnitus = Death by Noise”

 

Funny that you mentioned that Jazzer..
Originally I wanted to call it "Death by sound", but then I decided it might be too morbid for any potentional publusher...not wanting to scare them off, I changed it to "crippled" instead...
Great minds think alike my friend..

 

This is great, i wish you all the best with your T, your life and your book.

Awareness is key to fighting Tinnitus.

 

You can probably publish it at zero (or close to zero) cost if you go digital (ie an e-book). See https://justpublishingadvice.com/can-i-self-publish-a-book-for-free-yes-you-can/

It's trickier than you think. You need to research this further or get help from an Intellectual Property expert. Some websites' terms of use do make the users agree to release any IP claims for content they publish through them, but not all of them do. Jurisdiction matters too.

Good project.

I wish you good luck!

 

True!
But this is where the problem starts for those of us who don’t get better. For us who are too severe to cope let alone habituate!
Those who get better tend to continuously downplay what we go through.
After the initial shock tinnitus for them becomes insignificant and they think it’s the golden standard for everyone!

@Wolfears I believe is trying to change that and I fully support THE TRUTH, the bad and ugly has to be seen/heard if we ever want to get any attention from the world!

“Walking dead”.... that’s a catchy title!

After 8 years “crippled” doesn’t even scratch the surface!