James Needs Hearing Aids!
Donation protected
Hello there, I'm James.
I'm turning 24 and have something called Otosclerosis. This means that the tiny bones in my ears are fused, leaving me hard of hearing and occasionally deaf in both ears. At this time, I have about 35-40% hearing in my left ear, and about 70-75% hearing in my right ear. My hearing is going to get progressively less overtime. Currently, I communicate primarily by reading lips. speaking, and signing. I hear, but not very well. When my hearing goes out temporarily, I have trouble speaking clearly because I can't hear myself.
I need hearing aids to help me hear. Unfortunately, hearing aids are extremely expensive and not covered by insurance.
Hearing, for me, feels similar to trying to hear someone speak to me while I am under water. Everything is muted and garbled. I have good days and bad days. On a good day, I can hear without much difficulty if I am paying attention to what is happening around me. On a bad day, I can't understand a thing. It affects my balance, giving me vertigo, and I often have pain in my ears from higher pitched sounds. I have to stop what I am doing and try to collect myself because I get so confused and dizzy. It is a real pain, honestly.
The average cost of hearing aids is between $4,200 and $4,500, which is far more than I can afford. My insurance will pay for doctor visits, but not hearing devices.
While there is an ellective surgical option, I don't want it. It's scary and complicated, despite seeming simple on paper. I have talked extensively with my family and multiple physicians and we have decided that it would not be the best option for me, though that may not be the case for everyone.
Some people may have a problem with being hard of hearing or deaf, but I don't. It's been my normal since I was a child, and there's nothing wrong with being hard of hearing or deaf. It presents challenges, but life is full of those, and mine just happen to be different than the challenges most people face. My current challenge is affording what will help me communicate and live my life better - hearing aids.
I will truly appreciate any and all help towards reaching my goal of achieving a better quality of life. I want to continue to hear my (soprano) fiance's singing, to contribute to conversations without issue, to be able to hear my friends in group settings, to continue to hear the music that I love, to hear all the great noises our cats make, and so much more.
I know I am going to lose these things one day, but right now I want to enjoy them to the fullest. I want to have as much time as possible to build up a library of memories for the times that I can no longer hear. And you can help me do this.
I would like to achieve this goal by summer, if possible. There's no way to predict how fast or slow my progressive hearing loss will go, and so I would like to be fitted for hearing aids by summertime. If not by summertime, then ideally by the end of the year.
Thank you so much for taking the time to read my story. I greatly appreciate your time and thoughts, even if you are unable to donate. Please share my story and help me spread the word.
-James
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Otosclerosis is a condition affecting the stapes bone. A normal stapes bone moves like a small piston; sounds cause the piston to vibrate. In otosclerosis, a callus of bone accumulates on the stapes creating a partial fixation. This limits the movement of the stapes bone, which results in hearing loss.
You can read more about my condition here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1069039/
I'm turning 24 and have something called Otosclerosis. This means that the tiny bones in my ears are fused, leaving me hard of hearing and occasionally deaf in both ears. At this time, I have about 35-40% hearing in my left ear, and about 70-75% hearing in my right ear. My hearing is going to get progressively less overtime. Currently, I communicate primarily by reading lips. speaking, and signing. I hear, but not very well. When my hearing goes out temporarily, I have trouble speaking clearly because I can't hear myself.
I need hearing aids to help me hear. Unfortunately, hearing aids are extremely expensive and not covered by insurance.
Hearing, for me, feels similar to trying to hear someone speak to me while I am under water. Everything is muted and garbled. I have good days and bad days. On a good day, I can hear without much difficulty if I am paying attention to what is happening around me. On a bad day, I can't understand a thing. It affects my balance, giving me vertigo, and I often have pain in my ears from higher pitched sounds. I have to stop what I am doing and try to collect myself because I get so confused and dizzy. It is a real pain, honestly.
The average cost of hearing aids is between $4,200 and $4,500, which is far more than I can afford. My insurance will pay for doctor visits, but not hearing devices.
While there is an ellective surgical option, I don't want it. It's scary and complicated, despite seeming simple on paper. I have talked extensively with my family and multiple physicians and we have decided that it would not be the best option for me, though that may not be the case for everyone.
Some people may have a problem with being hard of hearing or deaf, but I don't. It's been my normal since I was a child, and there's nothing wrong with being hard of hearing or deaf. It presents challenges, but life is full of those, and mine just happen to be different than the challenges most people face. My current challenge is affording what will help me communicate and live my life better - hearing aids.
I will truly appreciate any and all help towards reaching my goal of achieving a better quality of life. I want to continue to hear my (soprano) fiance's singing, to contribute to conversations without issue, to be able to hear my friends in group settings, to continue to hear the music that I love, to hear all the great noises our cats make, and so much more.
I know I am going to lose these things one day, but right now I want to enjoy them to the fullest. I want to have as much time as possible to build up a library of memories for the times that I can no longer hear. And you can help me do this.
I would like to achieve this goal by summer, if possible. There's no way to predict how fast or slow my progressive hearing loss will go, and so I would like to be fitted for hearing aids by summertime. If not by summertime, then ideally by the end of the year.
Thank you so much for taking the time to read my story. I greatly appreciate your time and thoughts, even if you are unable to donate. Please share my story and help me spread the word.
-James
_____
Otosclerosis is a condition affecting the stapes bone. A normal stapes bone moves like a small piston; sounds cause the piston to vibrate. In otosclerosis, a callus of bone accumulates on the stapes creating a partial fixation. This limits the movement of the stapes bone, which results in hearing loss.
You can read more about my condition here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1069039/
Organizer
James Tetloff
Organizer
Tacoma, WA