How to Conceptualize What Tinnitus Has Done to Me

[AfroSnowman]

My tinnitus has a 24/7 60-70 dB loudness that due to its frequency isn't easily masked. My great challenge has been how to conceptualize this. How horrible is this? Need I think of it as horrible or I can I imagine it as just noise, not even real noise? How to place hope and faith vs resignation and faith? 7 months in, will I improve a bit or a lot over the next months and years? Could it ever reach the point that I wouldn't hear it over the shower or TV or noisy room or traffic?

There is profound power in hope.

There is a profound strength in resignation and leaving all thought of being normal behind and purely accept my reality as the only one there is.

I think I am now handling it pretty well, I rarely descend into pity and try to believe that some getting better is possible, that at the least maybe someday over the next half a year my better days will be the norm even as I habituate to the worst of it. It impacts my life, limits some of the thing I choose to do, and it certainly tires me as it takes a fair bit of unfocused focus to remain chill and keep the impact of the unending noise like water washing over my feet.

Yet still when I try to get my head around the whole of it, it still slips just out of my cognitive/emotional reach.

Related to this process I just read column in the NYT that I wanted to share. One of the columnists is going blind through some rare condition and he describes coming to terms with his shattered last hope as his participation in a clinical trial ends in failure. I thought it was apropos to what I am going through though our conditions are different.

https://www.nytimes.com/2019/11/02/opinion/sunday/what-i-learned-when-i-stabbed-myself-52-times.html

 

[MattS]

Thanks for this article Snowman - so many different themes in there are relevant and important. I, like you (and Mr. Bruno), feel that I'm mostly getting along "all right". I'm generally positive, I'm generally moving, I'm generally still striving forward, with goals, ambition, my life. It's a noisy life, sure... but as I've said elsewhere, I'm trying to allow myself to enjoy my personal symphony. Still... it's always nice (and sometimes important) to read perspectives like this one - so thank you for passing it on.

Indeed, I think everyone on this forum should read this article; should force themselves to explicitly make a decision about who they want to be moving forward: do you lament your lot, and spiral into darkness? Or do you allow life to continue, recognize that so many have it worse, and realize that you can still be a great, if somewhat different, person.

Mr. Bruno remains a great writer, who can touch millions. Maybe even touch them more now, now that he can touch them with a depth he didn't even see before.

Yes, we are hurting, suffering. But we can still carry on if we let ourselves, if we believe in ourselves. Everyone: read the article, decide who you want to be.

 

[dan]

Could it ever reach the point that I wouldn't hear it over the shower or TV or noisy room or traffic?

Do you hear it while in the shower?

 

[AfroSnowman]

should force themselves to explicitly make a decision about who they want to be moving forward: do you lament your lot, and spiral into darkness? Or do you allow life to continue, recognize that so many have it worse, and realize that you can still be a great, if somewhat different, person.

You get it. I'm glad you found it meaningful as well.

I'd write more but you put it very well, so I won't try.

But I'm glad to see someone who is of a similar mind of what this challenge means.

peace brother

 

[AfroSnowman]

Do you hear it while in the shower?

Yes there is nowhere I get to hide.

 

[dan]

Yes there is nowhere I get to hide.

I'm thinking the rainforest in your case.

 

[JohnAdams]

Yes there is nowhere I get to hide.

Cases like yours are the reason I absolutely despise the "professionals" that routinely downplay our conditions and pretend to be trying to help us and aren't.

 

[emmalee]

Indeed, I think everyone on this forum should read this article; should force themselves to explicitly make a decision about who they want to be moving forward: do you lament your lot, and spiral into darkness? Or do you allow life to continue, recognize that so many have it worse, and realize that you can still be a great, if somewhat different, person.

I am allowing my life to continue, MattS. Great post, thank-you.

 

[emmalee]

There is profound power in hope.

There is a profound strength in resignation and leaving all thought of being normal behind and purely accept my reality as the only one there is.

Well said, AfroSnowman. You have just created a new quote, one that I happen to like very much. Thank-you for the article.

 

[MattS]

I am allowing my life to continue, Matts. Great post, thank-you.

Welcome to the survivor's club Emmalee. The misfit group of superheroes that we are.

 

[AfroSnowman]

Cases like yours are the reason I absolutely despise the "professionals" that routinely downplay our conditions and pretend to be trying to help us and aren't.

Craziest thing for me, I just woke up in the middle of the night and my life changed from no Tinnitus to rather profound tinnitus: No drugs, no loud noise, no mental illness, no profound illness, though I had a headache for a couple of days preceding onset-ENT theorizes viral event, but he could have as easily told me invisible unicorns punctured my ears for all that guess is worth.

As to the pros who kind of dismiss this stuff, I think it is just the reaction of well meaning people who can't bare the the fact that they can't do anything for me. ENT, audiologists whatever, I kind of think it is a human defensive emotional response of people who have trained to be 'experts' but are entirely powerless to help. They are human, they feel bad, so they internalize it by shrugging and telling us to get on with it.

So though I will try Lenire, and Shore device and keep my hopes up that I can get to a symptomatically more benign place than I am now. I must find a way to live and not to wallow in misery for more moment more than I must. This is the only life I get (unless those billion hindus are right), I hope help comes soon, but I want to live my life in dignity, grace, and beauty, both for my own sake and that of my family. I miss the mark more often than I'd like, but I am working towards it. There are so many people with profound challenges, I am just new to the club.

The article is a good one, if you haven't read it, I recommend it.

 

[AfroSnowman]

Well said, AfroSnowman. You have just created a new quote, one that I happen to like very much. Thank-you for the article.

You're welcome

 

[JohnAdams]

As to the pros who kind of dismiss this stuff, I think it is just the reaction of well meaning people who can't bare the the fact that they can't do anything for me.

It's not even just that. They also don't promote awareness that anti-depressants and microsuction can cause tinnitus.

 

[emmalee]

Welcome to the survivor's club Emmalee. The misfit group of superheroes that we are.

Thank-you. I have never thought of myself as a super hero, but perhaps I should embrace the thought and get myself a cape.

This is a great thread, I am thoroughly enjoying the posts.

 

[MattS]

So though I will try Lenire and Shore device and keep my hopes up that I can get to a symptomatically more benign place than I am now.

I may be volunteering for the Shore clinical trial come December, once I hit the 6 month mark. Will keep everyone posted on that (if I'm allowed to - not sure if there are NDAs involved).

 

[MattS]

Thank-you. I have never thought of myself as a super hero, but perhaps I should embrace the thought and get myself a cape.

This is a great thread, I am thoroughly enjoying the posts.

Tinnitus Talk capes and Zorro masks! What do you think @Hazel?

 

[MattS]

As to the pros who kind of dismiss this stuff, I think it is just the reaction of well meaning people who can't bare the the fact that they can't do anything for me. ENT, audiologists whatever, I kind of think it is a human defensive emotional response of people who have trained to be 'experts' but are entirely powerless to help. They are human, they feel bad, so they internalize it by shrugging and telling us to get on with it.

I think this, too, is really insightful and well-said. It's really telling of where your at mentally Snowman. So many on here are having so much trouble getting past their own anger and grief (understandable so); for you to see the humanity in the doctors that can't help you... it's really impressive actually. If we ever meet, allow me to (quietly) clink glasses with you.

 

[AfroSnowman]

Welcome to the survivor's club Emmalee. The misfit group of superheroes that we are.

Great thought

 

[AfroSnowman]

I'm thinking the rainforest in your case.

You've been reading my posts .

 

[AfroSnowman]

I think part of my problem is trying to get my head around the idea of disability or not.

Am I disabled? I think yes, but I'm not entirely sure. It is different than being blind or paralyzed or developmentally disabled, but it is something for sure. I can't quite get my head around what this means. All the time I see those overcoming their disability lionized in popular culture (ie a blind guy sailing around the world, someone wheelchair-bound freestyle skiing). The line I expect to hear in the interview from such folks is that they don't view themselves as being handicapped. Of course I'm aware that one should not search for founts of wisdom in the X-games or on the 6 o'clock news.

What does it mean to be handicapped? I don't want to limit myself with self-imposed boundaries and definitions, on the other hand today was a bad day. I didn't win in my battle with my head and ears this afternoon. Part of admitting to disability is allowing for that reality, that it is OK to step back, close my office door and accept that I am in a diminished state.

This all goes to my original post, the conflicting ideas that I can't quite get my head around. Does being handicapped mean I need to seek peace and truth and meaning within that new reality or is the better path to reject that label and huck inverted 360 off the ski jump? I'm sure the answer it a bit of both.

Any insights or thoughts on how you consider this for yourself would be truly appreciated.

 

[emmalee]

What does it mean to be handicapped? I don't want to limit myself with self-imposed boundaries and definitions, on the other hand today was a bad day. I didn't win in my battle with my head and ears this afternoon. Part of admitting to disability is allowing for that reality, that it is OK to step back, close my office door and accept that I am in a diminished state.

It really is okay to allow for the reality of our situation, AfroSnowman. Stepping back and closing your office door is absolutely acceptable.

I consider myself to have a chronic health issue, even though it is not obvious when someone looks at me or interacts with me. Calling myself handicapped hasn't happened yet, perhaps it is my way of fighting back and not wanting the tinnitus to win.

I am sorry you are experiencing a bad day, today.

 

[MattS]

Am I disabled? I think yes, but I'm not entirely sure. It is different than being blind or paralyzed or developmentally disabled, but it is something for sure.

There's so much wrapped up in this question, it's hard to know exactly where to start. I can't guarantee to have all (or any) of the answers, but I'm happy to engage in the discussion, see where it leads us.

I think you are asking several very high-level questions.

First, there is the question of whether you see yourself as disabled or not. Some would likely say yes, for certain, you are. Indeed, from an objective perspective, I think we could meet the definition. Then again, as you said, it's not quite the same as something like blindness, paralysis or dementia. Some may say that it is all in the eye of the beholder, and that you are only disabled if you view yourself that way. As you implied Afro - there are kernels of truth in each perspective, and I think every individual has to figure out what the most productive perspective for themselves is.

Then there is the second, potentially more important, question of what disability means to you, should you define yourself that way. I think this question could be rephrased somewhat as: "Am I still the same person I was before? Or do I have to reinvent myself?". No doubt there are different perspectives here as well, but my own perspective is: of course you are still the same person: you have the same likes, the same dislikes, the same intellectual curiosity with the world (clearly!), the same sense of humor, the same way of engaging with the world, the same desire to be the best you can be - the same tendencies when the going gets tough. Indeed, it's exactly because you are still the same you that you are asking these high-brow questions (where few others are treading). These things haven't changed (even if some of the ways in which you achieve your goals may have to change somewhat). So, if there's one piece of advice I have, it's this: try very hard to separate out your self-concept from your disability-concept. Yes, you may have a disability of sorts, and yes, it may influence what you can and can't do, in ways that you aren't used to. But it doesn't have to define *you*. *You* are still *you* (for better or worse).

Related, I think, is the more specific question you posed re whether it's okay to close the office door. In other words: is it okay to step back from my previous way of doing things? Or must I fight this disability tooth/nail so as to prevent this disability from changing me? The answer, in my opinion, is: the disability won't "change you" either way. Rather, your choice here will depend on precisely who you are, how you see yourself, and how you have always chosen to engage with the world. Are you the type who does as much as he can, but is also prudent enough to understand his limits when he hits them? Or are you the type that goes full tilt into life no matter what, and expects that the rewards of this mentality will consistently outweigh the consequences? Neither perspective is wrong; neither is better than the other. But different people make different decisions here, depending on their own perspective on how to live the good life. One person may decide that their mental well-being is all there really is, and so decided to take a small step back from their previously uber-aggressive lifestyle, another person may double-down their resolve to retain their "I can take on the world" self-concept. Neither is wrong: I just think that each person needs to figure out what is best for them.

Finally, I'll just note that neither scenario above constitutes a victim mentality, which, I think, should be less encouraged (indeed, this *would* constitute a change of self-concept, unless you already perceived yourself as victim previously). Rather, both individuals - the one who takes a realistic step back at times, and the one that forces themselves to keep pushing forward no matter what - continue to engage with the world, continue to be the best they can be, continue to strive for happiness, and the happiness of those around them. The way they achieve this may change somewhat, but perhaps that's less important. Perhaps like Mr. Bruno, one may even find that in altering their world view slightly, they find a new part of themselves, previously hidden away, that offers new ways to engage with the world.

Am I putting a bit of a silver lining on the notion of disability? In some ways, perhaps. But to some extent it may be *the willingness to see* this silver lining that defines one's handling of "disability".

This rambled for a bit. But these are killer questions, and like you, they get my mind churning. Hopefully at least 1/4 of what I've said was helpful, or got your own ideas churning further as well. Certainly happy to hear your thoughts.

 

[MattS]

Guess I put everyone to sleep with those thoughts...

@AfroSnowman