What Is Life Worth without Hearing Normally?

[jdjd09]

I am reading everything all are writing. I'm trying my best, but without a time line for a cure for hearing loss, I don't know if I can really make it past this year in my life.

If I had hope of a real timeline as to when to expect a cure for hearing loss, I would calm down and wait (assuming it was reasonable time).

Now I just obsess over it. I'm not saying the above because I expect anyone today to give me that answer (although I would love to have that answer if someone has it).

But, I just don't really see myself continuing like this with no relief in site for my issue.

Sorry for sounding like a broken record, but those are my feelings to this. It's what I thought about today.

 

[Path Maker]

@jdjd09 Lemme go out on a limb here and predict two things:

1) You ARE going to make it past this year of your life, and I base this on your sheer ability to persist (and yes, be stubborn! which if channeled the right way, can be made into a strength)

2) You, only you, can figure out how to develop and channel that strength. Yes, you want a timeline to help you hang in there. But yes, also, you are discovering what just about every (aware, thinking, woken up) human being discovers at some point in their life's journey: THERE ARE JUST SOME THINGS WITHOUT IMMEDIATE ANSWERS.

Soooooo ... to COPE, CREATIVELY, with that, you need to (and you CAN) find a way to hang in there and keep operating.

That's where the "stubborn" comes in. You can choose to replay the same tape over and over about needing a timeline for WHEN hearing loss can be cured. Or, you can do THIS kind of tape: "Yes, I will keep investigating hearing loss solutions and continue to care about that. But yes also, I will USE THESE HOURS, DAYS, AND WEEKS OF MY LIFE FOR CONSTRUCTIVE ACTIVITY."

I recently read an article about the 27 things older people wished they'd known/done when they were young. And on that list, someone said (and I paraphrase): "I wish I hadn't spent so much time remaining in the knocked-down state when life knocked me down. I treated time as some luxury, and I wasted so much of it. I wished I'd always, after the initial shock and grief of a life-changing incident, gotten up, dusted off, figured out a new way, and gotten back into the game sooner. Not wasted SO MUCH TIME."

What kind of stubborn do you wish to continue as?

(Written with care, as usual, but hey: I mean it.)

 

[jdjd09]

@jdjd09 Lemme go out on a limb here and predict two things:

1) You ARE going to make it past this year of your life, and I base this on your sheer ability to persist (and yes, be stubborn! which if channeled the right way, can be made into a strength)

2) You, only you, can figure out how to develop and channel that strength. Yes, you want a timeline to help you hang in there. But yes, also, you are discovering what just about every (aware, thinking, woken up) human being discovers at some point in their life's journey: THERE ARE JUST SOME THINGS WITHOUT IMMEDIATE ANSWERS.

Soooooo ... to COPE, CREATIVELY, with that, you need to (and you CAN) find a way to hang in there and keep operating.

That's where the "stubborn" comes in. You can choose to replay the same tape over and over about needing a timeline for WHEN hearing loss can be cured. Or, you can do THIS kind of tape: "Yes, I will keep investigating hearing loss solutions and continue to care about that. But yes also, I will USE THESE HOURS, DAYS, AND WEEKS OF MY LIFE FOR CONSTRUCTIVE ACTIVITY."

I recently read an article about the 27 things older people wished they'd known/done when they were young. And on that list, someone said (and I paraphrase): "I wish I hadn't spent so much time remaining in the knocked-down state when life knocked me down. I treated time as some luxury, and I wasted so much of it. I wished I'd always, after the initial shock and grief of a life-changing incident, gotten up, dusted off, figured out a new way, and gotten back into the game sooner. Not wasted SO MUCH TIME."

What kind of stubborn do you wish to continue as?

(Written with care, as usual, but hey: I mean it.)

I will agree with you, as when I had my first health issue diagnosis, I believed what you say. I didn't focus too much the problems and did everything I could to improve my life. I was doing that. I was going back to school while working full time. I was saving up money. I was doing everything I should do to improve my life.

Then this happened. Now this is two health issues. However, this one screws with my doing the above (that I was doing to improve my life).

Before, I wasn't happy with life, but it was doable. However, with two issues (and one of them messing with me doing what I want to do), I really have never been closer to death in my life.

I'm not saying I want to die. I'm saying I want this version of this life to end. And I am not against suicide to accomplish that.

I agree with that last quote, wallowing throughout your entire life can be draining and such. So, no need to drag it out if science won't cure my issue.

I'm being honest, I never thought I would actually reach the point of suicide. I always semi thought about it, as it was comforting knowing I always had an out.

Now, I feel I need to use that out. It's been 6 months now, and life is harsh. Life is unfair, and no I don't think that is right like many say. It's a cosmic lottery, and some people get a good life and some get the short end of the stick. I'm not claiming to have the worst life on the planet, as I know things can get pretty bad in this world. But, I am certainly not going to claim having the best life either.

The torture truly needs to end. I hope one day no one else has to put up with this. But, until then, I see no point.

Only point I could see with my life is if some organization would allow me to try to cure hearing loss. If someone on here could tell me how someone with a computer science degree (and finance background [EDIT: Getting a CS degree, still working towards it]) could maybe work with an organization that would let me work with them to help get a cure.

I would program for them if it would help find a cure, go to events to find funding for the organization, etc.. But, I don't know any organization that would want me. I don't know what skills ones would need to even work towards that and don't know how to even begin to find out. I would have to be one that is actually trying to cure things though. I don't want anything to do with one trying to do "awareness". I want to help cure the issue. So, essentially ignore these two paragraphs. As, it's like saying I would love to work towards sending men to another galaxy via time warp. Great idea, the the details on how you do that matter.

So, it seems it may be time to leave this year. If things aren't better by December (if I seem to make it until then), I may be leaving. I never gave a date before in my life, so if I'm saying this, it means something.

 

[Path Maker]

Sigh. I am listening to you, man. I am really hearing you with an open heart. I am sad that you are sad. (And I may appear to have things together somewhat, but believe me, in some ways, I have had MAJOR doses of that unfairness you mention.) I just wish I could somehow convince you that there are other ways, other paths, real value in continuing, despite the fact that you have had such real disappointments. I think that:

1) you need to let time be your ally
2) you need to make a choice to trust in not knowing, for a while.
3) you need a longer timeline

Could you at least consider these? And just for now, not feel like the only way is the way you were going, and that other things might open up for you? And maybe, how's about just committing, even for the next few weeks or so, to doing something new, completely unrelated to hearing loss and work and etc.? Just a nice distraction - a fun class, a new hobby, a commitment to helping someone, going to United Way for a volunteer opportunity, etc.

If you are crossing an enormously wide river on stepping stones, you just have to begin. You can see maybe the first five stepping stones from the banks, but to get to stones number 6, 7, 8, etc., you had to have already begun stepping on the stones you can see, till you can discover the ones you couldn't.

Could ya do a few new things, for these months you're waiting it out, so that your time is well spent and maybe opens doorways you are currently unable to see?

 

[Sailboardman]

@jdjd09,

life is worth, what you make out it!

 

[Sailboardman]

@jdjd09,

"When the world is running down, you make the best of what's still around." The Police.

Btw, "Sting" is a fellow T and hearing loss, success story.

 

[Jkph75]

@jdjd09

Suicide is a permanent solution to a temporary problem. There really is no way for you to know whether or not a cure will be available to you in the future or if it will even bother you in the future. However, suicide makes it impossible for you to find out. I think we can all relate to how you feel in a sense. This condition is very difficult to live with but that doesn't mean that it isn't doable or worth it. Personally, I don't think that a cure for hearing loss is far away given all of the research that are doing with stem cells now. Tinnitus is a different story b/c it is a more complex problem.

BTW I am confused as to why you need perfect hearing to do your job. My brother has a similar degree and there were many completely deaf students in his classes.

 

[The Red Viper]

I will agree with you, as when I had my first health issue diagnosis, I believed what you say. I didn't focus too much the problems and did everything I could to improve my life. I was doing that. I was going back to school while working full time. I was saving up money. I was doing everything I should do to improve my life.

Then this happened. Now this is two health issues. However, this one screws with my doing the above (that I was doing to improve my life).

Before, I wasn't happy with life, but it was doable. However, with two issues (and one of them messing with me doing what I want to do), I really have never been closer to death in my life.

I'm not saying I want to die. I'm saying I want this version of this life to end. And I am not against suicide to accomplish that.

I agree with that last quote, wallowing throughout your entire life can be draining and such. So, no need to drag it out if science won't cure my issue.

I'm being honest, I never thought I would actually reach the point of suicide. I always semi thought about it, as it was comforting knowing I always had an out.

Now, I feel I need to use that out. It's been 6 months now, and life is harsh. Life is unfair, and no I don't think that is right like many say. It's a cosmic lottery, and some people get a good life and some get the short end of the stick. I'm not claiming to have the worst life on the planet, as I know things can get pretty bad in this world. But, I am certainly not going to claim having the best life either.

The torture truly needs to end. I hope one day no one else has to put up with this. But, until then, I see no point.

Only point I could see with my life is if some organization would allow me to try to cure hearing loss. If someone on here could tell me how someone with a computer science degree (and finance background [EDIT: Getting a CS degree, still working towards it]) could maybe work with an organization that would let me work with them to help get a cure.

I would program for them if it would help find a cure, go to events to find funding for the organization, etc.. But, I don't know any organization that would want me. I don't know what skills ones would need to even work towards that and don't know how to even begin to find out. I would have to be one that is actually trying to cure things though. I don't want anything to do with one trying to do "awareness". I want to help cure the issue. So, essentially ignore these two paragraphs. As, it's like saying I would love to work towards sending men to another galaxy via time warp. Great idea, the the details on how you do that matter.

So, it seems it may be time to leave this year. If things aren't better by December (if I seem to make it until then), I may be leaving. I never gave a date before in my life, so if I'm saying this, it means something.

I know where you can use your computer science and coding knowledge: The Human Brain Project

https://www.humanbrainproject.eu/2016-jobs

If you want to access the public platform now, go here and request an account (see option 3 on the following link: https://www.humanbrainproject.eu/platform-access). If they deny you access, just let me know and I'll send you an invite.

 

[jdjd09]

@jdjd09

Suicide is a permanent solution to a temporary problem. There really is no way for you to know whether or not a cure will be available to you in the future or if it will even bother you in the future. However, suicide makes it impossible for you to find out. I think we can all relate to how you feel in a sense. This condition is very difficult to live with but that doesn't mean that it isn't doable or worth it. Personally, I don't think that a cure for hearing loss is far away given all of the research that are doing with stem cells now. Tinnitus is a different story b/c it is a more complex problem.

BTW I am confused as to why you need perfect hearing to do your job. My brother has a similar degree and there were many completely deaf students in his classes.

@Jkph75 Where is the temporary problem? I'm not being facicious when I say that, I don't see any temporary problem.

But, on your brother, may I ask how many deaf people he knows in his CS classes? Where is he studying? I have taken CS courses and rarely saw ANY deaf people, so surprised he seems to have so many deaf people. Do those people hear the ringing too? Are they completely deaf?

 

[jdjd09]

I know where you can use your computer science and coding knowledge: The Human Brain Project

https://www.humanbrainproject.eu/2016-jobs

If you want to access the public platform now, go here and request an account (see option 3 on the following link: https://www.humanbrainproject.eu/platform-access). If they deny you access, just let me know and I'll send you an invite.

@The Red Viper , do you work for this organization or do research at all in real life about hearing loss? Can I ask what getting into this program would actually do? It seems they are mapping the brain. I can see that being a great idea. But, I just feel like it's another "research" thing with no end goal to do much anything with. Not that its not a good thing to do.

But, maybe I'm reading into it wrong. I will check it out though.

 

[The Red Viper]

@The Red Viper , do you work for this organization or do research at all in real life about hearing loss? Can I ask what getting into this program would actually do? It seems they are mapping the brain. I can see that being a great idea. But, I just feel like it's another "research" thing with no end goal to do much anything with. Not that its not a good thing to do.

But, maybe I'm reading into it wrong. I will check it out though.

I don't do research at all, but I plan on dabbing a little later this year (at least that's the plan). Right now I have to focus on other things.

I think you're reading into it wrong. Yes the overall goal is to map the brain, but that doesn't mean that mapping is the only thing they are doing. They are trying to simulate the brain. If that can be done, then tinnitus can be simulated as well, and therapies, drugs, etc. can be run on the simulation without having to worry about trials. Then they can focus on real life things from the knowledge they gain from the simulation. Perhaps all that is needed at the moment is just a simulation of the neural pathway from the inner ear to the auditory cortex instead of a full-blown brain simulation.

You asked what someone like you could do to help your and others situation, and I gave you one option as you are a programmer. I hate to burst your bubble but there is NOTHING in research that's going to give you a cure by the end of the year. I know it's tough, but if you really want to do something using your skills, I would give this or something similar a shot.

 

[Jkph75]

@Jkph75 Where is the temporary problem? I'm not being facicious when I say that, I don't see any temporary problem.

But, on your brother, may I ask how many deaf people he knows in his CS classes? Where is he studying? I have taken CS courses and rarely saw ANY deaf people, so surprised he seems to have so many deaf people. Do those people hear the ringing too? Are they completely deaf?

The problem is temporary in that you perceive it to be such a problem. In time your brain will adjust and it won't bother you to hear the way you do now. It is also possible that the ringing will go away as your brain adjusts. As a side note, I also believe that stem cell therapy will become a viable treatment for hearing loss. If you had enough $you could actually get it done now, though the technology has not been perfected.

Not sure where you are from but my brother went to school in the US at a school that had a subsection of the school for people who are deaf (RIT). I don't know an exact number but there were a lot. They were completely deaf. I don't know if they had ringing or not.

 

[jdjd09]

The problem is temporary in that you perceive it to be such a problem. In time your brain will adjust and it won't bother you to hear the way you do now. It is also possible that the ringing will go away as your brain adjusts. As a side note, I also believe that stem cell therapy will become a viable treatment for hearing loss. If you had enough $you could actually get it done now, though the technology has not been perfected.

Not sure where you are from but my brother went to school in the US at a school that had a subsection of the school for people who are deaf (RIT). I don't know an exact number but there were a lot. They were completely deaf. I don't know if they had ringing or not.

@Jkph75 , the reason your brother saw so many deaf people is that RIT has the largest technical deaf college in the world. So, that is why he saw so many.

It may be the case that a cure comes. I don't doubt one will come and it will be via gene editing, gene therapy, or stem cells (or something similar). Those are the three paths all major research seems to be taking place. But, by the time that cures comes, well I just missed out on a chapter of my life. At least that is the timeframe everyone seems to give, because no one will actually give one.

Anyways, this isnt my only problem in life. I had other health issues that prevented me from joining military, doing other things I planned, and caused me to make life decisions that really led down paths I didn't want to take. Nevermind family situation I'm not going to go into here. I'm not saying I had the worst life. I'm not saying I have the eorst hearing on the planet. It's a combination of a lot of things that has led to this point though.

This world honestly has been unenjoyable for me (that is understatement). But listening to the world around me oddly seemed to get me through it. Now that since got stolen. Sure, maybe it's possible that this is a perspective thing, but whatever it is I'm tired of it. This was the last issue in needed in my life right now. My life has been a simulation of a torture chamber.

I unfortunately can't afford stem cells in there current form, although would do them.

Overall, sadly, I really feel this is that last year I'm putting up with all this. But, it seems to be where my life is headed now, as I'm tired of it.

 

[Vaba]

@jdjd09

Soooooo ... to COPE, CREATIVELY, with that, you need to (and you CAN) find a way to hang in there and keep operating.

What kind of stubborn do you wish to continue as?

"Coping" and "operating" are not even close to "truly living" and "enjoying" life

 

[jdjd09]

"Coping" and "operating" are not even close to "truly living" and "enjoying" life

She is trying to help, please just don't bring further negativity to the thread, I'm making enough as it is. No offense to you.

 

[Path Maker]

"Coping" and "operating" are not even close to "truly living" and "enjoying" life

@Vaba - But in the face of serious and troubling situations, coping and operating are useful tools, hopefully back toward truly living and enjoying life. All of our lives are strewn with both the enjoyable and the not-so-enjoyable. We are all called, at one time or another, to endure and to cope. Sometimes that's the only thing we can do while we are striving to overcome. That's the spirit I wrote that in.

 

[linearb]

"Coping" and "operating" are not even close to "truly living" and "enjoying" life

everyone who is alive is "truly living".

The idea that most of life is supposed to be comfortable, easy and "enjoyable" is a relatively newfangled idea that's been forced on us by materialism and advertising and probably doesn't have much factual basis. Look around, at the animal world, the human world. Life is very, very difficult, brutal and short.

Prior to the advent of technology that's allowed resource scarcity to become a contrived thing, resource scarcity was just a reality. Disease is, and has always been, a reality. 100 years ago, if you were a typical working class family and you had six kids and (only) two of them died before they were 10 years old, you counted yourself as pretty lucky.

The more we hold ourselves to impossible, unrealistic standards, the more we suffer from the perceived discrepancy between our actual circumstances and our ideal conception of ourselves. That's sort of Zen 101.

 

[Path Maker]

everyone who is alive is "truly living".

The idea that most of life is supposed to be comfortable, easy and "enjoyable" is a relatively newfangled idea that's been forced on us by materialism and advertising and probably doesn't have much factual basis. Look around, at the animal world, the human world. Life is very, very difficult, brutal and short.

Prior to the advent of technology that's allowed resource scarcity to become a contrived thing, resource scarcity was just a reality. Disease is, and has always been, a reality. 100 years ago, if you were a typical working class family and you had six kids and (only) two of them died before they were 10 years old, you counted yourself as pretty lucky.

The more we hold ourselves to impossible, unrealistic standards, the more we suffer from the perceived discrepancy between our actual circumstances and our ideal conception of ourselves. That's sort of Zen 101.

@linearb Thank you. Beautifully said. When I was typing, for some reason I began to think about Nelson Mandela, who had so much of his time taken from him in prison. Just one example, among millions, in so many ways, that shows what you said. The "myth" of: grow up, get great job, save for retirement, live to 75-85, have lots of material toys, etc. has always bothered me. People become so indoctrinated/fixated on this that when "life" doesn't cooperate, there is much "unlearning" to do in order to cope well. It also stops many people from really embarking on the courageous adventure of living a life in alignment with what might REALLY be their heart's desire or true mission here on earth. Anyway, I digress.

Back to jd's topic!

 

[LadyDi]

The idea that most of life is supposed to be comfortable, easy and "enjoyable" is a relatively newfangled idea that's been forced on us by materialism and advertising and probably doesn't have much factual basis. Look around, at the animal world, the human world. Life is very, very difficult, brutal and short.

Yep, what @linearb said. While I appreciate that many here are truly suffering and trying to learn how to cope, sometimes it feels like some folks are unable to understand why something difficult has happened to them. I understand it can be tough to accept in the beginning. Was for me. But reality is: life is hard. And bad shit comes for us all. Every last one of us. The key is acceptance and moving on.

 

[Path Maker]

The idea that most of life is supposed to be comfortable, easy and "enjoyable" is a relatively newfangled idea that's been forced on us by materialism and advertising and probably doesn't have much factual basis. Look around, at the animal world, the human world. Life is very, very difficult, brutal and short.

Yep, what @linearb said. While I appreciate that many here are truly suffering and trying to learn how to cope, sometimes it feels like some folks are unable to understand why something difficult has happened to them. I understand it can be tough to accept in the beginning. Was for me. But reality is: life is hard. And bad shit comes for us all. Every last one of us. The key is acceptance and moving on.

Yes, and also to always, always, always notice the wonderful and blessed parts of our lives. Not trying to diminish the actual suffering many have. But life is awash in the truly amazing and that shouldn't go unnoticed or unappreciated!

 

[jdjd09]

For those who had sudden hearing loss in one ear, did it get better? How did it get better? How long did that take you?

I seriously wonder what is the point anymore :/. I will seek a therapist one last time before I do anything "rash", but if that person doesn't help me I'm leaving I think. I need a cure for hearing loss, that is the bottom line. I can't do the hearing aid thing right now. I need a cure.

If all I had was this ringing, but normal hearing, I wouldn't care and not even be on this forum. Sure, it wouldn't be great, but it is what it is. However, the ringing is part of my hearing loss. It is where I don't hear the sound anymore and also reminds me at all times I have hearing loss.

Overall, I need this to stop. I need my hearing back.

 

[jdjd09]

So nothing, ok great. Well then, things surely are looking great then, seeing the above answer is essentially how every doctor treated me. It's good to see how the world really feels. Honestly can't wait for the inevitable.

Anyways, if anyone has an answer to my previous posted question, before this one, please do respond. I would really like a response.

 

[PaulBe]

Well JD. Four pages, some kind replies, some not so much. In the end the only answer lies within yourself.

 

[jdjd09]

Well JD. Four pages, some kind replies, some not so much. In the end the only answer lies within yourself.

The answer I have is leaving eventually. This was the health issue that set me over the edge. Not to mention all the other issues before this. But as living and studying.

My own answer is to eventually leave, possibly this year.

 

[jdjd09]

What countries would euthenize me over this? I am sure they would make me talk to a psychologist to evaluate me. That is fine, as I would probably see one before I did anything on my own anyways,f or one last shot.

Anyone? What country could I go to, as USA citizen, to do it? The USA isnt going to let me, I can tell you that.

 

[just1morething]

@jdjd09, I think a lot of us think of ending it all at some time, but our survival instinct is so strong. I am currently experiencing a very loud awakening spike that I don't know what to do about. Meds don't seem to work very good lately for me.

Our bodies are a bit broken, but what can we do? It would be nice to vanish into thin air, but that is impossible, so we continue on trying to cope. Your condition is a bit different than mine so it's hard for me to understand. Maybe you can participate in the OTO-311 trials later this year?

 

[jdjd09]

@jdjd09, I think a lot of us think of ending it all at some time, but our survival instinct is so strong. I am currently experiencing a very loud awakening spike that I don't know what to do about. Meds don't seem to work very good lately for me.

Our bodies are a bit broken, but what can we do? It would be nice to vanish into thin air, but that is impossible, so we continue on trying to cope. Your condition is a bit different than mine so it's hard for me to understand.

That is the thing though, it is possible to just vanish. People do it on a daily basis when they suicide. Some studies from University of Virginia point to some coming back in another life (they are case studies, but it was enough evidence for a well known physicist to comment that it would be statistically hard to ignore something is going on). Of course it's not 100% proof, but the studies are out there.

People leave thete lives all the time, as sad as that is.

EDIT: To respond to your edit, I don't know if I will be entering any more drug trials at this point. I had an apsolutely horrible experience with the last one I was in. Also, the same people are probably running it again, and I want no part to do with those doctors ever again (if it is run in my area).

 

[GregCA]

Some studies from University of Virginia point to some coming back in another life (they are case studies, but it was enough evidence for a well known physicist to comment that it would be statistically hard to ignore something is going on). Of course it's not 100% proof, but the studies are out there.

Can you please point to those studies? Sounds like interesting reading!

 

[PaulBe]

My own answer is to eventually leave, possibly this year.

I think all of us pass through something like this. Some act on it, some don't. I nearly did, but time can bring new thinking, or at least moderate some of the old thinking. I don't hold an opinion or judgement any more on those who talk suicide, or even try to. In the end its between you and yourself what you do. Just consider what pain it could bring to others who care for you, and whether its so bad for you that inflicting that pain on them is worth it to free yourself. Hard one I know.

 

[jdjd09]

I think all of us pass through something like this. Some act on it, some don't. I nearly did, but time can bring new thinking, or at least moderate some of the old thinking. I don't hold an opinion or judgement any more on those who talk suicide, or even try to. In the end its between you and yourself what you do. Just consider what pain it could bring to others who care for you, and whether its so bad for you that inflicting that pain on them is worth it to free yourself. Hard one I know.

Actually, the funny thing is, is I have been moved around so much in my life that honestly no one really cares all that much. I have not that many long term connections in this world. Family doesn't really care, they have basically told me to get on with it if I'm going to do it and has already said they semi expect it at this point.

Not really anyone to hurt in this life due to my odd upbringing. Sure, I have a few "friends" in my current location. But I can tell they wouldn't care all that much either. Extended family could care less as well because no one in it really talks to each other hardly either. Again, my upbringing seems unique compared to everyone else I have talked to over the years. Not saying I'm the only one, but usually families are more connected to each other in my experience.