@ZFire, thanks for the feedback. It's good we can talk about these topics and respect each other.
I grew up in the '90s and I remember hearing about AIDS in school. They even had us watch a movie about it — some reenactment of a famous person who contracted it and tragically died. AIDS was seen as a death sentence back then. They warned us about it heavily. The fear reminded me of the hysteria and subsequent drills that came with the creation of the atomic bomb, when schools rehearsed what we should do if we ever heard that alarm to take cover. But now, it's no longer the devil it was. Medical magic made sure of that and the impossible became possible — effective treatments. Breakthroughs and science changed that, and that shows us that anything is possible when it comes to diseases and the prospects of treating them. But it didn't happen without money. That 28 billion a year has saved lives.
What especially scares me about severe tinnitus and noxacusis — I have both — is that they're so rare, I fear they'll always be sidelined by the world. If 10 people out of a million get noxacusis, that's a tiny number in the big scheme of things. Is the world going to really invest itself in such a small group of people? What's in it for them? Because, remember, money is always the driving force behind this stuff. I'm in a situation where my life is over if I can't improve. I'm homebound and can't even work now; can't even be around people. Noxacusis is a devil. Turns out, one of the worst things in the world is also the rarest. And that doesn't help our cause.
I do have hope in XEN1101 and Deep Brain Stimulation, and I'm hoping that they genuinely help those who suffer. It's possible that a treatment made for something else, like XEN1101 being an epilepsy and MDD drug, could help us.
This is going to sound controversial for some, but the medical community fears death too much. They rank and prioritize a condition based off how it affects one's mortality. If it will kill you, it's front and center when it comes to funding. But sometimes a natural death is nature's way of providing a dignified exit. Two hundred years ago, people would die naturally when faced with such a crisis, and that's not always a bad thing. The disorders and diseases that should be feared most are the ones that ruthlessly destroy your life, yet never take it to the grave — things like noxacusis, catastrophic tinnitus, people who are paralyzed, etc. A natural death should not be feared. It's a process of life that we all face. But not being able to interact with the world, talk to people, be a part of society, work, listen to sound… those are things that should trigger fear. Many who are in those shoes can't do those things without permanent worsenings. It's like they're in eternal quicksand that never ends. Being incompatible with existence is a real problem. Death isn't, especially if you believe you're going to a positive afterlife.
With severe noxacusis and reactive tinnitus, people are forced to isolate themselves forevermore when they can't recover from the afflictions... some of them in their 20s and 30s! What are they supposed to do for the next 50 years, assuming they'll live a normal lifespan? They can't work and can't even get on disability often. You see, the governments of this world leave them in a paradoxical situation, where they can't live and can't die either. They won't give them enough financial aid through disability to survive. They're literally left to rot. That's the realm the world should fear. Ask any sufferer who's experiencing extreme noxacusis or reactive tinnitus... they'd rather have the terminal cancer because life's over for them as is. They don't want to pull the plug themselves and shouldn't have to. Suicide or euthanasia shouldn't be the solution. And they're a moral conundrum for some. I don't condone them and feel they're not viable options. But the sad reality of the times is that it's easier to get legally euthanized than to get the world to respect ear conditions.
Member
