MemberHello Everyone,
I'm not sure why, but I was just sitting here and realized that today, at this moment, was the time to write my "success story."
I have had tinnitus since April 13th, 2013, so a year and five months, just about. I called this post "the light" because that's kind of how I feel about tinnitus now on a number of levels. I feel the load has been lightened, emotionally and physically, since it started and that, having come through the darkest parts of this experience, I can see all the good things that have come into my life because of the way I (eventually) chose to react to T.
I think using that word, choice, is so important. Surely, at the beginning, I felt powerless, I felt like I had no choice, or that my choices had lead me to T and so I needed to blame myself. I was so full of anger, self-pity (even some level of self-hatred perhaps) and more than anything, just potent despair. I saw my problem, and as so many others have, wished I had someone else's battle to fight, though now that thought seems unbelievable to me. I could not see the light at the end of the tunnel, especially in those first weeks and months, the whole world seemed to be covered in a black haze. I looked back at my life just on the other size of April 13th and thought, how on earth did this happen? How can I live, or have a relationship, how will anyone understand? Every person I saw I thought, "they don't have T", which of course, I couldn't know - and heaven knows what other horrors they may have been dealing with, but that was my initial reaction to the trauma. My life on the other side of that day seemed so rosy and easy and so intangible. I felt deeply and completely alone.
And, I was alone. Surely, people cared about me (and looking back, that was essential, though I didn't see the full value of that then, I needed it), but it was my "battle" to fight and I did have to come out of it by myself, that is I had to make the choice that I was going to be happy again. I didn't know how that was going to happen at the time, but eventually, and somewhat mysteriously, things turned out okay.
I can't count now how many things I tried in order to try and get out of my emotional and physical misery in the beginning. Looking back at that desperate person almost brings me to tears. I feel so terribly for her and for all of us here who have felt that desperation, and for all of those (though hopefully not many), who are no longer with us because they didn't feel they could find a way out. I spent a lot of money (oye) and tried a million supplements, meditations, doctors, therapists, HBOT, books, hypnosis - truly, with the exception of "the tinnitus miracle" (haha), I tried it. After all of that, I would say it all worked, and simultaneously, none of it worked.
I still have tinnitus, I'm not sure the sound has changed much, though if it has, it is softer and lower to me. Mostly though, I think I'm just habituated to it. Ah "habituation" the tinnitus sufferer's holy grail. I wish I had some kind of flight path I could lay out for others so that they could walk whatever path I walked, but I think it's different for everyone. In the beginning, trying almost everything gave me a sense of purpose in a way, I think I needed to fight it in the beginning so that I would know later that I tried everything. I don't regret anything that I tried, even the sillier things. So everything "helped" though nothing technically "worked" (at least not significantly enough to cure me).
At some point, perhaps 7 or 8 months after my T started, something just started to change. For those of you who have learned a second language later in life, I think that's the closest thing I can compare the experience of habituation to. I was living in France years ago - I was there for a year, and at first everything was difficult, but at some point, things just started to make sense to my brain. I felt little "hurdles" being passed, though I wasn't sure what I was doing exactly to arrive at, or pass over these hurdles. It felt similar with habituating to T. Yes, I was making an effort to be good to myself, to meditate, to go on with my work, school and friend (for T) or to do my verb conjugations and struggle through conversation (in French), but both were difficult and felt foreign. I had to learn all over again, in a different way, something that had once been normal and easy. I put in my effort, and mysteriously, my brain and body filled in the blanks and aided my efforts in both cases. It was both a conscious and a subconscious effort. I don't think I could have sped up the process much, though I think I could have slowed it down if I were harder on myself or focusing on my misery or trying to listen to my T. I am so in awe of my body. Of course, learning a language and habituating to T are not very similar in many ways, but hopefully everyone kind of gets the point I'm trying to make. I feel like habituation can seem so mysterious, but it's a process that happens in life all the time, it's just a hard one to imagine given the toll T takes on so many of us.
Anyway, all of this to say, there is light at the end of the tunnel. When my T began, I was as close to wanting to leave the world as I have ever been. I hope that anyone reading this who is in that dark place now, doesn't look at this post and think "she's too happy and nonchalant about this, it must not have been that bad." Believe me, it was bad. My mother had to fly 3,000 miles to take care of me because I wasn't eating, was having panic attacks and all I could really say was that I wanted to die. That is a difficult thing for me to admit now, that I said that, that I looked at the exacto knife on my desk and weighed my options. I only bring up all of that darkness, because I want people to know that there is a life beyond that. Things can be good again, though it seems truly impossible. Life probably will not be the same again, but it can be as good or better, if different. I truly believe that.
Looking forward, I feel this wonderful sense of purpose. I'm an artist and designer, and I want to use my skills to bring more awareness to this condition. My T was noise induced and it happened because I simply did not know to protect my ears the way I protect my head when I ride a bike or my body when I have sex etc. I want to make protecting yourself from T as normal and as widely known as those things. I think there's a hole out there for beautiful and meaningful T awareness that is more focused on the individuals and their (inspiring) stories. I think we can share caution, while still spreading hope. Though fundraising for a cure is absolutely needed (of course!), I think I can add more to the world (personally) through nipping noise-induced T in the bud where possible, especially with teens and young adults. I feel I can make awareness beautiful. For those of us who have it, I hope I can spread a little light and show that life is still beautiful with T
Being in a position to take on these projects feels like such a blessing to me and it's one of the things I'm thankful for from this experience, among many, many other things.
So lastly, thank you to all of you who, so many of you, who have written here, who have posted yours success stories, who have been my pen-pal, my therapist, who have helped me and who have let me help you. You have all been a gift in my life, though many of you may not know it, or even know me. My greatest privilege has been being able to offer a proverbial hand up to those who needed it or who asked it of me. It is a joy, and I think, once you hit a point when you are more whole and ready to give of yourself again, giving back has been the most healing thing for me in my T journey. Whether that was giving back to other sufferers, or volunteering in my community, looking outside of myself (once I was able) helped me heal the most. It wasn't something I even thought I'd be able to do when T first struck, but I'd recommend it now. I know all the old-hands here already know that this feels good since they're all still here spreading hope to myself and others! (Bless you @Markku and company for giving back so much of yourselves and creating this forum!)
So, in closing this (gigantic - sorry) post, my heart is with each and every one of you. I know we don't all have the same T, or the same journey, or the same pain. I do not mean to belittle anyone's suffering to say that I currently feel good and I think that something like this is possible for everyone, but I do believe it is possible for everyone, though I know in some cases it must be much, much harder, I still think it's possible. That's just me! I may have to habituate to a new sound again one day, or we may find the "cure" (woo!), but if not, life can still be good and that's what I want to say.
Part of my little healing was writing a blog for myself, though I think it's been of some help to others. It's a smidge out of date because at some moment I no longer needed it, but it shows my inner journey over about a year and what I tried. It's not selling, promoting or collecting anything, but if it helps, here it is: www.hopeblog.org.
If anyone wants to write, wants advice, wants to collaborate on art things, awareness or whatever else, or if you have a story you want to share that could be part of some future art, I love T penpals and I love stories (and I really love writing - clearly - ha!) hopeblog@outlook.com
With gratitude and hope,
awbw8 (all will be well)
I'm not sure why, but I was just sitting here and realized that today, at this moment, was the time to write my "success story."
I have had tinnitus since April 13th, 2013, so a year and five months, just about. I called this post "the light" because that's kind of how I feel about tinnitus now on a number of levels. I feel the load has been lightened, emotionally and physically, since it started and that, having come through the darkest parts of this experience, I can see all the good things that have come into my life because of the way I (eventually) chose to react to T.
I think using that word, choice, is so important. Surely, at the beginning, I felt powerless, I felt like I had no choice, or that my choices had lead me to T and so I needed to blame myself. I was so full of anger, self-pity (even some level of self-hatred perhaps) and more than anything, just potent despair. I saw my problem, and as so many others have, wished I had someone else's battle to fight, though now that thought seems unbelievable to me. I could not see the light at the end of the tunnel, especially in those first weeks and months, the whole world seemed to be covered in a black haze. I looked back at my life just on the other size of April 13th and thought, how on earth did this happen? How can I live, or have a relationship, how will anyone understand? Every person I saw I thought, "they don't have T", which of course, I couldn't know - and heaven knows what other horrors they may have been dealing with, but that was my initial reaction to the trauma. My life on the other side of that day seemed so rosy and easy and so intangible. I felt deeply and completely alone.
And, I was alone. Surely, people cared about me (and looking back, that was essential, though I didn't see the full value of that then, I needed it), but it was my "battle" to fight and I did have to come out of it by myself, that is I had to make the choice that I was going to be happy again. I didn't know how that was going to happen at the time, but eventually, and somewhat mysteriously, things turned out okay.
I can't count now how many things I tried in order to try and get out of my emotional and physical misery in the beginning. Looking back at that desperate person almost brings me to tears. I feel so terribly for her and for all of us here who have felt that desperation, and for all of those (though hopefully not many), who are no longer with us because they didn't feel they could find a way out. I spent a lot of money (oye) and tried a million supplements, meditations, doctors, therapists, HBOT, books, hypnosis - truly, with the exception of "the tinnitus miracle" (haha), I tried it. After all of that, I would say it all worked, and simultaneously, none of it worked.
I still have tinnitus, I'm not sure the sound has changed much, though if it has, it is softer and lower to me. Mostly though, I think I'm just habituated to it. Ah "habituation" the tinnitus sufferer's holy grail. I wish I had some kind of flight path I could lay out for others so that they could walk whatever path I walked, but I think it's different for everyone. In the beginning, trying almost everything gave me a sense of purpose in a way, I think I needed to fight it in the beginning so that I would know later that I tried everything. I don't regret anything that I tried, even the sillier things. So everything "helped" though nothing technically "worked" (at least not significantly enough to cure me).
At some point, perhaps 7 or 8 months after my T started, something just started to change. For those of you who have learned a second language later in life, I think that's the closest thing I can compare the experience of habituation to. I was living in France years ago - I was there for a year, and at first everything was difficult, but at some point, things just started to make sense to my brain. I felt little "hurdles" being passed, though I wasn't sure what I was doing exactly to arrive at, or pass over these hurdles. It felt similar with habituating to T. Yes, I was making an effort to be good to myself, to meditate, to go on with my work, school and friend (for T) or to do my verb conjugations and struggle through conversation (in French), but both were difficult and felt foreign. I had to learn all over again, in a different way, something that had once been normal and easy. I put in my effort, and mysteriously, my brain and body filled in the blanks and aided my efforts in both cases. It was both a conscious and a subconscious effort. I don't think I could have sped up the process much, though I think I could have slowed it down if I were harder on myself or focusing on my misery or trying to listen to my T. I am so in awe of my body. Of course, learning a language and habituating to T are not very similar in many ways, but hopefully everyone kind of gets the point I'm trying to make. I feel like habituation can seem so mysterious, but it's a process that happens in life all the time, it's just a hard one to imagine given the toll T takes on so many of us.
Anyway, all of this to say, there is light at the end of the tunnel. When my T began, I was as close to wanting to leave the world as I have ever been. I hope that anyone reading this who is in that dark place now, doesn't look at this post and think "she's too happy and nonchalant about this, it must not have been that bad." Believe me, it was bad. My mother had to fly 3,000 miles to take care of me because I wasn't eating, was having panic attacks and all I could really say was that I wanted to die. That is a difficult thing for me to admit now, that I said that, that I looked at the exacto knife on my desk and weighed my options. I only bring up all of that darkness, because I want people to know that there is a life beyond that. Things can be good again, though it seems truly impossible. Life probably will not be the same again, but it can be as good or better, if different. I truly believe that.
Looking forward, I feel this wonderful sense of purpose. I'm an artist and designer, and I want to use my skills to bring more awareness to this condition. My T was noise induced and it happened because I simply did not know to protect my ears the way I protect my head when I ride a bike or my body when I have sex etc. I want to make protecting yourself from T as normal and as widely known as those things. I think there's a hole out there for beautiful and meaningful T awareness that is more focused on the individuals and their (inspiring) stories. I think we can share caution, while still spreading hope. Though fundraising for a cure is absolutely needed (of course!), I think I can add more to the world (personally) through nipping noise-induced T in the bud where possible, especially with teens and young adults. I feel I can make awareness beautiful. For those of us who have it, I hope I can spread a little light and show that life is still beautiful with T
Being in a position to take on these projects feels like such a blessing to me and it's one of the things I'm thankful for from this experience, among many, many other things.So lastly, thank you to all of you who, so many of you, who have written here, who have posted yours success stories, who have been my pen-pal, my therapist, who have helped me and who have let me help you. You have all been a gift in my life, though many of you may not know it, or even know me. My greatest privilege has been being able to offer a proverbial hand up to those who needed it or who asked it of me. It is a joy, and I think, once you hit a point when you are more whole and ready to give of yourself again, giving back has been the most healing thing for me in my T journey. Whether that was giving back to other sufferers, or volunteering in my community, looking outside of myself (once I was able) helped me heal the most. It wasn't something I even thought I'd be able to do when T first struck, but I'd recommend it now. I know all the old-hands here already know that this feels good since they're all still here spreading hope to myself and others! (Bless you @Markku and company for giving back so much of yourselves and creating this forum!)
So, in closing this (gigantic - sorry) post, my heart is with each and every one of you. I know we don't all have the same T, or the same journey, or the same pain. I do not mean to belittle anyone's suffering to say that I currently feel good and I think that something like this is possible for everyone, but I do believe it is possible for everyone, though I know in some cases it must be much, much harder, I still think it's possible. That's just me! I may have to habituate to a new sound again one day, or we may find the "cure" (woo!), but if not, life can still be good and that's what I want to say.
Part of my little healing was writing a blog for myself, though I think it's been of some help to others. It's a smidge out of date because at some moment I no longer needed it, but it shows my inner journey over about a year and what I tried. It's not selling, promoting or collecting anything, but if it helps, here it is: www.hopeblog.org.
If anyone wants to write, wants advice, wants to collaborate on art things, awareness or whatever else, or if you have a story you want to share that could be part of some future art, I love T penpals and I love stories (and I really love writing - clearly - ha!)
hopeblog@outlook.comWith gratitude and hope,
awbw8 (all will be well)
Manager
