![\"Photo](\"http:\/\/urban-plains.com\/2016\/wp-content\/uploads\/2016\/11\/Copy-of-DSC_0188-1124x747.jpg\")
Photo by Emily VanSchmus<\/p><\/div>\n
One writer struggles with her identity after health insurance leaves her in limbo<\/span><\/h5>\nWords by Sydney Price<\/span><\/i><\/p>\nMy heart raced\u2014a frenzied staccato of panic. I was over 4,500 miles from home, studying abroad in Florence, Italy, and I couldn\u2019t hear a thing. <\/span><\/p>\nI woke up, got out of bed, wandered to the dresser and put on my cochlear implant\u2014like I\u2019d done every morning for the last 16 years. This time, though, the small device I relied on to hear the birds chirping each brisk Italian morning wasn\u2019t working. No sound. Adrenaline pulsed through my body. I was suddenly wide awake. I tried again, just to be sure. Nothing. <\/span><\/p>\nIt was the tail end of April. I had two weeks and five finals to go, but everything around me was silent. <\/span><\/p>\nThe Bionic Ear(s)<\/h6>\n
A <\/span>cochlear implant<\/span><\/a> isn\u2019t a hearing aid. It doesn\u2019t amplify sound. It converts it, morphs it into electrical impulses that stimulate the auditory (cochlear) nerve in a way that can be understood and interpreted by the brain. It does this using two parts: there are the external microphone and speech processor, which do exactly what you\u2019d think they do. Then there are the internal transmitter and receiver, which converts the sound to electric pulses and sends it to electrodes in the cochlea, that spiral part of the inner ear that processes sound. <\/span><\/p>\nThese implants are relatively new technology\u2014and they\u2019re <\/span>fairly rare.<\/span><\/a> In the United States, CIs were first FDA-approved for adults in the mid-1980s. Since then, roughly 58,000 devices have been implanted in those over 18 in the U.S. Implants were approved for children in 1990. I\u2019m one of the approximately 38,000 American kids who have received them. I got mine in 1999 at age five. Today, bilateral implantation (both ears) is a common practice, but I only received one implant. So when it didn\u2019t work, I couldn\u2019t hear. <\/span><\/p>\nLuckily, the company that manufactured my implant has an international office in Milan, so one last-minute emergency train ticket later, I was on my way. Two technicians greeted me and ran a series of tests on both the external and internal portions of my implant to figure out what was wrong. I tried to convince myself it was nothing. A cord malfunction maybe\u2014just a part replacement. As they worked, my implant taunted me, sputtering on for a second only to cut out again, like when you\u2019re in a bad cell service area and parts of a phone conversation cut out. This happened over and over. The women I was working with had to alternate between speaking to me and scribbling things down on a piece of paper. It wouldn\u2019t work long enough for the whole message to get through.<\/span><\/p>\nA long, hopeful moment went by without a hiccup. We thought we\u2019d solved it. Then it flickered off again.<\/span><\/p>\nThey knew it before I did. <\/span><\/p>\nThey glanced at each other, eyes downcast. One shook her head gently. The other wrote the word down and passed the paper across the table. <\/span>It is intermittent.<\/span><\/i><\/p>\nThe world was silent. I was deaf.\u201d<\/p>\n
-Sydney Price<\/p><\/blockquote>\n
I processed this for several moments. The device I\u2019d faithfully relied on for 16 years needed to be replaced. <\/span>Surgically<\/span><\/i> replaced. I ran out of the building in tears. The technicians came out to see me. They murmured comforting (I assumed) words in Italian and sympathetically rubbed my shoulders. The world was silent. I was deaf. <\/span><\/p>\nMissing Out<\/h6>\n
While still abroad, I learned how to say, \u201cI\u2019m deaf\u201d in Italian (<\/span>Sono sordo<\/span><\/i>). It wasn\u2019t nearly as difficult as I\u2019d imagined being deaf in a different country might be. But when you deal with people who don\u2019t speak your language every day, you learn to improvise. <\/span><\/p>\nIt was different when I returned to the States. Once the relief of seeing familiar faces wore off, I was forced to confront my identity\u2014or lack thereof\u2014as a deaf person. <\/span><\/p>\nI\u2019d been able to hear for as long as I could remember. I don\u2019t know sign language. I never considered myself a part of <\/span>Deaf culture<\/span><\/a>. <\/span><\/p>\nAs such, I\u2019m a member of the hidden deaf. At a glance, you wouldn\u2019t know that I struggle to hear every day. My life isn\u2019t particularly remarkable. I\u2019m a college student with an internship. I go out on weekends. I stay up too late in the library, and I scramble to finish projects\u2014just like everyone else. <\/span><\/p>\nBack in Italy, \u201csordo\u201d lacked the connotation that the word \u201cdeaf\u201d carries for me in English. Saying \u201cdeaf\u201d out loud felt like a dirty word. And publicly admitting my disability felt like admitting weakness. I never considered myself disabled\u2014I could hear with my implant, after all. \u00a0<\/span><\/p>\nAnd I tried to continue to live my life that way. Even without a functioning implant, I spoke normally and attempted to lip-read the best that I could. This didn\u2019t work well. Puzzled stares followed me to Target, at lunch with my brother and even while getting coffee. I left many stores with burning cheeks. Suddenly, I no longer blended in. My deafness felt like a flashing neon sign above my head. I wanted to scream, \u201cThere\u2019s nothing wrong with me!\u201d<\/span><\/p>\nIn May, after I was back in my native Illinois and had filed all the necessary paperwork to replace my implant, my hearing was deemed lower priority by my insurance company because it wasn\u2019t a life-threatening emergency. <\/span><\/p>\nBut it threatened the quality of my life. I missed important moments: my uncle\u2019s wedding, my little cousin\u2019s dance recital and group dinners with friends. I was there, but I floated on the periphery. It was like watching a silent movie\u2014but it\u2019s not enjoyable to be an audience to your own life. I felt left out and lonely, even among friends. Sure, I could text and chat online. My family wrote messages for me on a small whiteboard. But it wasn\u2019t enough. I was used to rich communication\u2014tone of voice, laughter, expressions that go with words. Text on a screen can\u2019t imitate that. Nothing but actual sound can. <\/span><\/p>\nAccess to CIs
\n<\/span><\/h6>\nIt costs $120,000 for me to hear\u2014and that\u2019s on the lower end. The implant alone costs $83,000 (over half the cost of my college tuition). The rest covers the surgery, but it doesn\u2019t include the anesthesiologist, numerous follow-up audiologist visits and the post-surgery auditory therapy. <\/span><\/p>\nUnsurprisingly, when insurance approval finally came through in June, it was for replacement of the failed implant. A request for a second implant was deemed \u201cmedically unnecessary.\u201d An appeal to reopen the case for an additional implant could potentially take even more weeks of red tape. Alternatively, my own employer\u2019s insurance might cover another implant in the future. <\/span><\/p>\n
My heart raced\u2014a frenzied staccato of panic. I was over 4,500 miles from home, studying abroad in Florence, Italy, and I couldn\u2019t hear a thing. <\/span><\/p>\n I woke up, got out of bed, wandered to the dresser and put on my cochlear implant\u2014like I\u2019d done every morning for the last 16 years. This time, though, the small device I relied on to hear the birds chirping each brisk Italian morning wasn\u2019t working. No sound. Adrenaline pulsed through my body. I was suddenly wide awake. I tried again, just to be sure. Nothing. <\/span><\/p>\n It was the tail end of April. I had two weeks and five finals to go, but everything around me was silent. <\/span><\/p>\n A <\/span>cochlear implant<\/span><\/a> isn\u2019t a hearing aid. It doesn\u2019t amplify sound. It converts it, morphs it into electrical impulses that stimulate the auditory (cochlear) nerve in a way that can be understood and interpreted by the brain. It does this using two parts: there are the external microphone and speech processor, which do exactly what you\u2019d think they do. Then there are the internal transmitter and receiver, which converts the sound to electric pulses and sends it to electrodes in the cochlea, that spiral part of the inner ear that processes sound. <\/span><\/p>\n These implants are relatively new technology\u2014and they\u2019re <\/span>fairly rare.<\/span><\/a> In the United States, CIs were first FDA-approved for adults in the mid-1980s. Since then, roughly 58,000 devices have been implanted in those over 18 in the U.S. Implants were approved for children in 1990. I\u2019m one of the approximately 38,000 American kids who have received them. I got mine in 1999 at age five. Today, bilateral implantation (both ears) is a common practice, but I only received one implant. So when it didn\u2019t work, I couldn\u2019t hear. <\/span><\/p>\n Luckily, the company that manufactured my implant has an international office in Milan, so one last-minute emergency train ticket later, I was on my way. Two technicians greeted me and ran a series of tests on both the external and internal portions of my implant to figure out what was wrong. I tried to convince myself it was nothing. A cord malfunction maybe\u2014just a part replacement. As they worked, my implant taunted me, sputtering on for a second only to cut out again, like when you\u2019re in a bad cell service area and parts of a phone conversation cut out. This happened over and over. The women I was working with had to alternate between speaking to me and scribbling things down on a piece of paper. It wouldn\u2019t work long enough for the whole message to get through.<\/span><\/p>\n A long, hopeful moment went by without a hiccup. We thought we\u2019d solved it. Then it flickered off again.<\/span><\/p>\n They knew it before I did. <\/span><\/p>\n They glanced at each other, eyes downcast. One shook her head gently. The other wrote the word down and passed the paper across the table. <\/span>It is intermittent.<\/span><\/i><\/p>\n The world was silent. I was deaf.\u201d<\/p>\n -Sydney Price<\/p><\/blockquote>\n I processed this for several moments. The device I\u2019d faithfully relied on for 16 years needed to be replaced. <\/span>Surgically<\/span><\/i> replaced. I ran out of the building in tears. The technicians came out to see me. They murmured comforting (I assumed) words in Italian and sympathetically rubbed my shoulders. The world was silent. I was deaf. <\/span><\/p>\n While still abroad, I learned how to say, \u201cI\u2019m deaf\u201d in Italian (<\/span>Sono sordo<\/span><\/i>). It wasn\u2019t nearly as difficult as I\u2019d imagined being deaf in a different country might be. But when you deal with people who don\u2019t speak your language every day, you learn to improvise. <\/span><\/p>\n It was different when I returned to the States. Once the relief of seeing familiar faces wore off, I was forced to confront my identity\u2014or lack thereof\u2014as a deaf person. <\/span><\/p>\n I\u2019d been able to hear for as long as I could remember. I don\u2019t know sign language. I never considered myself a part of <\/span>Deaf culture<\/span><\/a>. <\/span><\/p>\n As such, I\u2019m a member of the hidden deaf. At a glance, you wouldn\u2019t know that I struggle to hear every day. My life isn\u2019t particularly remarkable. I\u2019m a college student with an internship. I go out on weekends. I stay up too late in the library, and I scramble to finish projects\u2014just like everyone else. <\/span><\/p>\n Back in Italy, \u201csordo\u201d lacked the connotation that the word \u201cdeaf\u201d carries for me in English. Saying \u201cdeaf\u201d out loud felt like a dirty word. And publicly admitting my disability felt like admitting weakness. I never considered myself disabled\u2014I could hear with my implant, after all. \u00a0<\/span><\/p>\n And I tried to continue to live my life that way. Even without a functioning implant, I spoke normally and attempted to lip-read the best that I could. This didn\u2019t work well. Puzzled stares followed me to Target, at lunch with my brother and even while getting coffee. I left many stores with burning cheeks. Suddenly, I no longer blended in. My deafness felt like a flashing neon sign above my head. I wanted to scream, \u201cThere\u2019s nothing wrong with me!\u201d<\/span><\/p>\n In May, after I was back in my native Illinois and had filed all the necessary paperwork to replace my implant, my hearing was deemed lower priority by my insurance company because it wasn\u2019t a life-threatening emergency. <\/span><\/p>\n But it threatened the quality of my life. I missed important moments: my uncle\u2019s wedding, my little cousin\u2019s dance recital and group dinners with friends. I was there, but I floated on the periphery. It was like watching a silent movie\u2014but it\u2019s not enjoyable to be an audience to your own life. I felt left out and lonely, even among friends. Sure, I could text and chat online. My family wrote messages for me on a small whiteboard. But it wasn\u2019t enough. I was used to rich communication\u2014tone of voice, laughter, expressions that go with words. Text on a screen can\u2019t imitate that. Nothing but actual sound can. <\/span><\/p>\n It costs $120,000 for me to hear\u2014and that\u2019s on the lower end. The implant alone costs $83,000 (over half the cost of my college tuition). The rest covers the surgery, but it doesn\u2019t include the anesthesiologist, numerous follow-up audiologist visits and the post-surgery auditory therapy. <\/span><\/p>\n Unsurprisingly, when insurance approval finally came through in June, it was for replacement of the failed implant. A request for a second implant was deemed \u201cmedically unnecessary.\u201d An appeal to reopen the case for an additional implant could potentially take even more weeks of red tape. Alternatively, my own employer\u2019s insurance might cover another implant in the future. <\/span><\/p>\nThe Bionic Ear(s)<\/h6>\n
Missing Out<\/h6>\n
Access to CIs
\n<\/span><\/h6>\n