Member- Apr 30, 2014
- 533
- Tinnitus Since
- 04/2014 (many increases since then)
- Cause of Tinnitus
- Progressive hearing loss / noise / ETD
Well I think it's finally time to post here.
My success story is one I wouldn't really consider a success story but rather an ongoing one filled with small successes, setbacks, failures, etc.
I can't really talk about just how much tinnitus has effected me unless I talk about who I am as a person and how life has been for me because it's never "just" the tinnitus (though it is a main character in my story).
I was born 25 years ago (I'll be 25 at the end of July so it counts!
) in a small town in California to two people who probably shouldn't have had a child. But life isn't fair like that. I was born with a rare genetic defect called PHPV. Basically the vitreous fluid in my eye was literally plasticizing around my lens and I had a cataract and a detached retina. At 10 days old I was taken into surgery to remove my lens and reattach my retina which would fix the main problem but would leave me with limited vision in my right eye and "lazy eye". I grew up and life was hard. I was a generally happy child but I knew things between my two parents were not as they should be. Combine that with cruel remarks from children at school, my father's alcoholism and abuse and neglect, financial disasters, my parent's divorce, poverty, several failed eye surgeries and one successful one, dreaded puberty, glaucoma, and, yes, some high frequency hearing loss, and you can say my life was pretty messed up. Funny thing was it all evened out by the time I got to high school. I. LOVED. HIGH SCHOOL.
I discovered my passion in life during my time in high school. Or rather, I defined it because it has always been with me. I wanted to sing. Ever since I could talk I never really wanted to do anything but sing. I still do. Singing was an escape, a joy, an art form and I was very good at it. I mean, it helped that I seemed to have a natural talent but exercising that talent and working at training it for years brought me the greatest satisfaction in life. And then I went to college to get my BA in Music. Everything was finally coming together.
College was... interesting. My first year makes me cringe because it was full of me being unsure of what I was doing half the time. I think I kinda wasted my first year in general confusion and it sort of led me to where I am now. I enjoyed my music classes yes, but something was always missing and I could never quite figure out what it was. So I tried to fill what was missing with the internet and with friends, food, and fun and more music. None of that ever worked but never let it be said that I can't be stubborn. Flash forward to the spring quarter of my third year in college and I was feeling a little sad but otherwise comfortable. I spent my days learning in class and doing music work and then coming back to my campus apartment where I would do my homework, hang out with friends, and spent LOTS and LOTS of time listening to music over headphones (thin walls between bedrooms make for angry roommates if you don't quiet down. I spent a lot of time just chatting online and listening to music for HOURS. Even late into the night.
I would occasionally go to some event or concert and I noticed in the month leading up to the night that would change me forever that my ears would ring after those events. But I would always sleep it off and it would be gone by morning. I didn't think much of it. Then, a few nights before I would go to bed it was almost like I was getting these weird high pitched snaps going off in my head as I laid down. Again I just slept it off and didn't think much on it. And then.... one night I was listening to some music for homework late into the night and when I took my headphones off, there it was. A mid-high tone tea kettle whistle in my right ear. I froze. I panicked inwardly. I plugged my ears and listening to it. I got into bed, tried not to panic and told myself it would be gone the next day. When I opened my eyes the next day it was not gone.
You all probably know the rest. You've all been there. Panic. Anxiety. Tears. Diagnosis. Crying. Praying. Bargaining. The whole grief process. Learning that there is no cure. Learning that there are not surefire treatments if any at all. Relearning your life. Earplugs. Avoiding loud places. Loneliness. Support forums. Habituation.
Flash forward a hard and lonely year later with added tones (a low drone in my left ear, a whine late at night and the tea kettle creeping ever so slightly into the left ear). I made mistake number one. I got too confident with my habituation. I attended an event for my service learning class. We put on a concert for some elementary school children. I stood too close to the speaker on stage. Even with hearing protection on it wasn't enough. And it was my fault. A new high pitched noise in my left ear that was hard to mask. Back once again to the drawing board. All the awful nightmarish stuff I went through before was happening again. And I had to live through a summer of an internship I had already signed up for working for a summer musical show. I don't know how I got through that summer to be honest, even with my therapist. I know I was suicidal for most of it. But I got through and attended school the next year and habituated again.
Flash forward to graduation. I did it. Five years of school and I finally got that Bachelors degree. I could go home. I could rest. I could... Well, try to live as normally as possible. I knew the inevitable decision I would make at the end of school: To quit music as a career forever. The only reason I kept going was because I was too far in to not get the degree I worked so hard for. So I did. I went back to working at my lousy retail job and just trying to find a different direction. I lived through my friends' wedding in the fall and was finally starting to feel like maybe I could do this life thing.
It wasn't to last. January 1st, 2017 at midnight. Happy New Year! CHAMPAGNE POP! That did it for my ear. It was loud. I went home and when I sat on my bed I realized I had decreased hearing and the high pitched ring traveled to my right ear too and all my tones were louder. So began another year of trying to adjust and lots of tears. I did revive my faith life a little. Or at least some semblance of one.
And then... just when I thought life was looking up spring of this year. BAM. I went to bed one night and realized that my nigh vision looked funny. And turning off lights didn't mean that the lights left my vision as quickly as they used to. After images, static. Hello Visual Snow Syndrome. Another condition for which there is no treatment or cure. But with the help of a few friends and some youtube videos I think I got past the panic stage and got used to it in three weeks. Granted, it was hard because that same week I got it one of my best friends' father passed away and the funeral was incredibly sad. I hit the ground running again, or so I though. March 1st, 2018. I went to work for an 8 hour shift. It was a stereotypical shift up at the cash register. Except there were moments where the line filled with talking people, screaming children, etc. I guess I didn't realize how loud it got at certain points because I was so focused on my work. I came home with loud T in both ears, particularly those high pitched noises. I went to bed thinking it was another spike. Boy was I dead wrong. Once again, I got too confident with myself and habituation. I lost more hearing (by this point it's super noticeable how much hearing I've lost). I was angry. How was it that all these people could be in environments like this and not lose hearing? Why me? All the same nightmare BS came back again. I had to fight once again.
So here I am now. A little worse for wear, starting to habituate again (new antidepressants helped and gave me some hope) and I think I'm doing better at habituating now. But I must tell you that my new normal isn't normal at all. I am sad very often even though I have close to happy moments. I cry a lot on some days. Some days the tinnitus is so loud I can't do anything but sit in my room on the internet and rest. I can't work a full time job because it puts a strain on my exhausted body and worsens my tinnitus. I am for all intents and purposes partially disabled. But not disabled enough for government benefits, ha!
I'm... sad but I have hope. It's very small this hope I have but it's there. Help is on the way, that's what I tell myself. Help is on the way for us with hearing loss and tinnitus and for now I just have to fight and fight to see the day when it comes. I have to be kind and compassionate to myself and others. I have to take on day at a time and try not to think too much about the future aside from that hope (or else I'll turn into a big pile of sadness and anxiety). I'm working on getting hearing aids if my insurance will let me. Don't know how effective they'll be but it's worth a shot. I'm going to a therapist once a month (cause ain't nobody got money for weekly sessions and I live in California for goodness sake. Nobody here can afford anything unless you're rich). I take my antidepressant and I try to take that extra time to really appreciate the good things like food, weather, flowers, and friends. Because I will never know when my normal will change again. And I'm sure it will. I just hope I have some more time in between.
I'm sad and happy and just trying to get through. I can spend most of my time most days not thinking or perceiving my tinnitus. That's a good sign I think. My life has been messed up from the day I was born (maybe even before that lol) and it will probably get even more messed up with time. I have faith that God is there and that He loves me but I don't see eye-to-eye with Him sometimes and that's okay too. I'm sure He can handle my anger, my doubts, my sadness, and my questioning. I mean He really doesn't have a choice at this point because if I'm forced to live this life because He created me then He gets to deal with me as I am: a walking, talking disaster LOL!
So what's my message of hope to tinnitus sufferers? The truth:
Tinnitus is a monster. None of us deserve to have it. I could stay the same for you for many years. It could get worse as mine has. Your life will change whether you like it or not. Some of those changes will be bearable. Others will be highly unpleasant and it will test you. It's okay to be sad. It's okay to grieve. Even if you've habituated there will be days where you get sad about it. We've been dealt an abominably crappy hand in life haven't we?
But there is hope. It's very small but I want you all to hang onto it: That help is on the way. Sure there are naysayers and pessimists. But at the end of the day hold onto the hope that something is coming for us. Be a part of the effort to bring that something to fruition. Donate your money and time to sites like this and organizations actively doing research that benefits us. Be kind to one another because haven't we had enough crap already from our tinnitus?
But my most important piece of advice in relation to this?
BREATHE AND HOLD ON. SOMETHING IS COMING AND I WANT YOU AND I TO BE THERE TO SEE IT.
I want that dance party that we on Tinnitus Talk talked about having after we get our treatment/cure.
And in the words of one of our lovely mods on here
lot's of love,
derpytia
My success story is one I wouldn't really consider a success story but rather an ongoing one filled with small successes, setbacks, failures, etc.
I can't really talk about just how much tinnitus has effected me unless I talk about who I am as a person and how life has been for me because it's never "just" the tinnitus (though it is a main character in my story).
I was born 25 years ago (I'll be 25 at the end of July so it counts!
) in a small town in California to two people who probably shouldn't have had a child. But life isn't fair like that. I was born with a rare genetic defect called PHPV. Basically the vitreous fluid in my eye was literally plasticizing around my lens and I had a cataract and a detached retina. At 10 days old I was taken into surgery to remove my lens and reattach my retina which would fix the main problem but would leave me with limited vision in my right eye and "lazy eye". I grew up and life was hard. I was a generally happy child but I knew things between my two parents were not as they should be. Combine that with cruel remarks from children at school, my father's alcoholism and abuse and neglect, financial disasters, my parent's divorce, poverty, several failed eye surgeries and one successful one, dreaded puberty, glaucoma, and, yes, some high frequency hearing loss, and you can say my life was pretty messed up. Funny thing was it all evened out by the time I got to high school. I. LOVED. HIGH SCHOOL.I discovered my passion in life during my time in high school. Or rather, I defined it because it has always been with me. I wanted to sing. Ever since I could talk I never really wanted to do anything but sing. I still do. Singing was an escape, a joy, an art form and I was very good at it. I mean, it helped that I seemed to have a natural talent but exercising that talent and working at training it for years brought me the greatest satisfaction in life. And then I went to college to get my BA in Music. Everything was finally coming together.
College was... interesting. My first year makes me cringe because it was full of me being unsure of what I was doing half the time. I think I kinda wasted my first year in general confusion and it sort of led me to where I am now. I enjoyed my music classes yes, but something was always missing and I could never quite figure out what it was. So I tried to fill what was missing with the internet and with friends, food, and fun and more music. None of that ever worked but never let it be said that I can't be stubborn. Flash forward to the spring quarter of my third year in college and I was feeling a little sad but otherwise comfortable. I spent my days learning in class and doing music work and then coming back to my campus apartment where I would do my homework, hang out with friends, and spent LOTS and LOTS of time listening to music over headphones (thin walls between bedrooms make for angry roommates if you don't quiet down. I spent a lot of time just chatting online and listening to music for HOURS. Even late into the night.
I would occasionally go to some event or concert and I noticed in the month leading up to the night that would change me forever that my ears would ring after those events. But I would always sleep it off and it would be gone by morning. I didn't think much of it. Then, a few nights before I would go to bed it was almost like I was getting these weird high pitched snaps going off in my head as I laid down. Again I just slept it off and didn't think much on it. And then.... one night I was listening to some music for homework late into the night and when I took my headphones off, there it was. A mid-high tone tea kettle whistle in my right ear. I froze. I panicked inwardly. I plugged my ears and listening to it. I got into bed, tried not to panic and told myself it would be gone the next day. When I opened my eyes the next day it was not gone.
You all probably know the rest. You've all been there. Panic. Anxiety. Tears. Diagnosis. Crying. Praying. Bargaining. The whole grief process. Learning that there is no cure. Learning that there are not surefire treatments if any at all. Relearning your life. Earplugs. Avoiding loud places. Loneliness. Support forums. Habituation.
Flash forward a hard and lonely year later with added tones (a low drone in my left ear, a whine late at night and the tea kettle creeping ever so slightly into the left ear). I made mistake number one. I got too confident with my habituation. I attended an event for my service learning class. We put on a concert for some elementary school children. I stood too close to the speaker on stage. Even with hearing protection on it wasn't enough. And it was my fault. A new high pitched noise in my left ear that was hard to mask. Back once again to the drawing board. All the awful nightmarish stuff I went through before was happening again. And I had to live through a summer of an internship I had already signed up for working for a summer musical show. I don't know how I got through that summer to be honest, even with my therapist. I know I was suicidal for most of it. But I got through and attended school the next year and habituated again.
Flash forward to graduation. I did it. Five years of school and I finally got that Bachelors degree. I could go home. I could rest. I could... Well, try to live as normally as possible. I knew the inevitable decision I would make at the end of school: To quit music as a career forever. The only reason I kept going was because I was too far in to not get the degree I worked so hard for. So I did. I went back to working at my lousy retail job and just trying to find a different direction. I lived through my friends' wedding in the fall and was finally starting to feel like maybe I could do this life thing.
It wasn't to last. January 1st, 2017 at midnight. Happy New Year! CHAMPAGNE POP! That did it for my ear. It was loud. I went home and when I sat on my bed I realized I had decreased hearing and the high pitched ring traveled to my right ear too and all my tones were louder. So began another year of trying to adjust and lots of tears. I did revive my faith life a little. Or at least some semblance of one.
And then... just when I thought life was looking up spring of this year. BAM. I went to bed one night and realized that my nigh vision looked funny. And turning off lights didn't mean that the lights left my vision as quickly as they used to. After images, static. Hello Visual Snow Syndrome. Another condition for which there is no treatment or cure. But with the help of a few friends and some youtube videos I think I got past the panic stage and got used to it in three weeks. Granted, it was hard because that same week I got it one of my best friends' father passed away and the funeral was incredibly sad. I hit the ground running again, or so I though. March 1st, 2018. I went to work for an 8 hour shift. It was a stereotypical shift up at the cash register. Except there were moments where the line filled with talking people, screaming children, etc. I guess I didn't realize how loud it got at certain points because I was so focused on my work. I came home with loud T in both ears, particularly those high pitched noises. I went to bed thinking it was another spike. Boy was I dead wrong. Once again, I got too confident with myself and habituation. I lost more hearing (by this point it's super noticeable how much hearing I've lost). I was angry. How was it that all these people could be in environments like this and not lose hearing? Why me? All the same nightmare BS came back again. I had to fight once again.
So here I am now. A little worse for wear, starting to habituate again (new antidepressants helped and gave me some hope) and I think I'm doing better at habituating now. But I must tell you that my new normal isn't normal at all. I am sad very often even though I have close to happy moments. I cry a lot on some days. Some days the tinnitus is so loud I can't do anything but sit in my room on the internet and rest. I can't work a full time job because it puts a strain on my exhausted body and worsens my tinnitus. I am for all intents and purposes partially disabled. But not disabled enough for government benefits, ha!
I'm... sad but I have hope. It's very small this hope I have but it's there. Help is on the way, that's what I tell myself. Help is on the way for us with hearing loss and tinnitus and for now I just have to fight and fight to see the day when it comes. I have to be kind and compassionate to myself and others. I have to take on day at a time and try not to think too much about the future aside from that hope (or else I'll turn into a big pile of sadness and anxiety). I'm working on getting hearing aids if my insurance will let me. Don't know how effective they'll be but it's worth a shot. I'm going to a therapist once a month (cause ain't nobody got money for weekly sessions and I live in California for goodness sake. Nobody here can afford anything unless you're rich). I take my antidepressant and I try to take that extra time to really appreciate the good things like food, weather, flowers, and friends. Because I will never know when my normal will change again. And I'm sure it will. I just hope I have some more time in between.
I'm sad and happy and just trying to get through. I can spend most of my time most days not thinking or perceiving my tinnitus. That's a good sign I think. My life has been messed up from the day I was born (maybe even before that lol) and it will probably get even more messed up with time. I have faith that God is there and that He loves me but I don't see eye-to-eye with Him sometimes and that's okay too. I'm sure He can handle my anger, my doubts, my sadness, and my questioning. I mean He really doesn't have a choice at this point because if I'm forced to live this life because He created me then He gets to deal with me as I am: a walking, talking disaster LOL!
So what's my message of hope to tinnitus sufferers? The truth:
Tinnitus is a monster. None of us deserve to have it. I could stay the same for you for many years. It could get worse as mine has. Your life will change whether you like it or not. Some of those changes will be bearable. Others will be highly unpleasant and it will test you. It's okay to be sad. It's okay to grieve. Even if you've habituated there will be days where you get sad about it. We've been dealt an abominably crappy hand in life haven't we?
But there is hope. It's very small but I want you all to hang onto it: That help is on the way. Sure there are naysayers and pessimists. But at the end of the day hold onto the hope that something is coming for us. Be a part of the effort to bring that something to fruition. Donate your money and time to sites like this and organizations actively doing research that benefits us. Be kind to one another because haven't we had enough crap already from our tinnitus?
But my most important piece of advice in relation to this?
BREATHE AND HOLD ON. SOMETHING IS COMING AND I WANT YOU AND I TO BE THERE TO SEE IT.
I want that dance party that we on Tinnitus Talk talked about having after we get our treatment/cure.
And in the words of one of our lovely mods on here
lot's of love,
derpytia
